a paediatric musculoskeletal competence framework for ... msk 2019- spine_0.pdf · musculoskeletal...

2019

Association of Paediatric

Chartered Physiotherapists

MSK Specialist Committee

A Paediatric Musculoskeletal Competence Framework for Physiotherapists Working in the UK

The Spine

1

Contents

Introduction …………………………………………………………………2 What is a competence framework? …………………………………….3

- Definition of competence - How a competence framework differs from competency

Aims of the competence framework ……………………….…………..3 Using this document ………………………………….…………………..5 Workforce planning ……………………………….………………………5 Introduction references …………………………………………………. 6 The Spine ……………………………………….…………………………..7 Spine references ………………………….………………………………19 Acknowledgements ………………………………………………………20

2

Introduction

Children and young people are different from adults. They are continually developing physically, emotionally

and psychologically. Due to the physiology and biomechanics of growth, young people show a unique set of

age related symptoms. Whilst many conditions seen in childhood are self-limiting; some more serious

pathology can occur. Delays in diagnosis may lead to long term disability or mortality [1]. The differential

diagnosis relevant to musculoskeletal symptoms is so broad that adequate paediatric training is essential.

Clinicians working in this specialist field must have a clear understanding of the biological differences

between children and adults. [2]

Physiotherapists are personally accountable for their practice and are responsible for their own actions. They

must work within their competence according to the CSP and HCPC guidelines for practice. They have a

duty of care to children, young adults and their families to ensure they receive safe, competent care.

Authorities commissioning services for children and young people need to be certain that professionals

employed have the correct training as indicated by their professional bodies.

The intention of this document is to provide a learning resource for physiotherapy assessment and

management of children and young people presenting with musculoskeletal symptoms.

The document was developed by a panel of expert paediatric physiotherapists to establish the basis by which

to prepare the physiotherapy workforce to deliver safe care to children and young people requiring

musculoskeletal assessment, advice and management.

Physiotherapists will be able to utilise the document as the basis for their ongoing learning and demonstrate

their competence to practise as a physiotherapist with children and young adults.

3

What is a Competence Framework?

Definition of competence The CSP defines competence as being a combination of “a person’s skills, knowledge, job responsibilities,

scope of practice and behaviour and professionalism”. [3]

Competence means the caregiver can integrate knowledge skills and personal attributes consistently in daily

practice to meet established standards of performance. [4]

What it is and what it is not

Competence involves:

Thinking, critical analysis and learning;

Assimilation of new learning with previous learning;

Integration of new knowledge, skills and abilities with previous knowledge;

Application of new learning in practice.

Competence is not:

Just about knowledge, skills and abilities;

About defining technical competence;

About the technical skills necessary to do a job;

Just about doing or completing a task.

How a competence framework differs from competency

A competence framework provides a guide to the range of knowledge, and skills and abilities a practitioner

needs to work at a safe, effective, professional standard. It does not look at competencies that are formally

assessed and passed.

Aims of the Competence Framework

The overall aims of this framework are to:

1. Provide physiotherapists, working with children and young people, with clear guidelines regarding the

knowledge and skills required to achieve quality care in this specialist field.

2. Guide managers and educators in the design and implementation of learning experiences that help

practicing physiotherapists achieve these competences.

The advice given in this document is based on research evidence available at the time of writing and reflects

a consensus of professional experience by the authors.

4

It is important that this document is read in this context and the reader should seek the most current

information from a number of sources. The ultimate judgement regarding any specific procedure or treatment

must be made in consideration of all facts presented and the resources available.

It is expected that this will be a working document which will stimulate discussion, and changes will be made

as new knowledge, skills and innovations emerge.

These competences are not intended to replace other standards, but to be used in conjunction with:

Working with Children – Guidance on good practice; Association Paediatric Chartered

Physiotherapists (APCP) 2016. [5]

Quality Assurance Standards for physiotherapy service delivery; The Chartered Society of

Physiotherapy (CSP) 2013. [6]

Code of professional values and behaviour; Chartered Society of Physiotherapy (CSP) 2011. [7]

Physiotherapy Framework: putting physiotherapy behaviors, values, knowledge and skills into

practice The Charters Society of Physiotherapy (CSP) 2011 [updated Sept 2013] [8]

Standards of Proficiency for Physiotherapists; Health and Care Professions Council 2013. [9]

National Service Framework for Children, Young People and Maternity Services: Core Standards;

Department of Health, 2004. [10]

The Common Core of skills and knowledge. CWDC, 2010. [11]

Managing Performance Issues; Chartered Society Physiotherapy, 2011. [3]

5

Using this Document A grading system has been generated based on those used within the “Resource Manual and Competences

for Extended Musculoskeletal Physiotherapy Roles”. The grading system is outlined below.

1. Foundation: Knows of / has heard of / has read about

2. Intermediate: Can demonstrate acceptable performance in the competency/area of knowledge but

is not expected to demonstrate full competence or practice autonomously.

3. Proficient: Demonstrates competence through the skills and ability to practice safely and effectively

without the need for direct supervision.

4. Advanced: The practitioner is autonomous and reflexive, perceives situations as a whole, delivers

care safely and accurately and is aware of current best practice.

5. Expert: Is able to demonstrate a deeper understanding of the situation and contributes to the

development and dissemination of knowledge through teaching and development of others.

It is not expected that every physiotherapist working with children and young adults will achieve expert level

in all the dimensions of the framework; some aspects may need to be developed. For example, a newly

qualified physiotherapist in their first role is likely to be at level one (will have a basic knowledge of or have

heard something about the condition during their undergraduate training); whereas a more senior

physiotherapist may request further investigations such as blood tests and imaging; conduct complex

assessments and interventions so will therefore be working at an “expert level “.

It is important that the individual analyses their role within the context of their current job role in order to

identify development needs and prioritise their continuing professional development (CPD) requirements.

The framework is intended to be empowering and aspirational. It is primarily a tool to support self-assessment

and personal development plans rather than a tool against which performance is judged.

Each document sets out the knowledge and skills required for a musculoskeletal body area. Information

written in ‘italics’ are relevant to all ages; whilst ‘coloured plain text’ relates specifically to paediatrics. Where

appropriate, hyperlinks to additional APCP documents or other relevant resources have been provided.

Workforce planning The framework will give service managers and higher educational institutes an insight into the expertise and

competence required of a specialist paediatric musculoskeletal physiotherapist.

It will provide service providers and commissioners with evidence that the workforce has the relevant

competence to ensure delivery of high quality, qualitative, safe and effective care.

The document may be used when developing a business case, to promote and sell specialist paediatric MSK

physiotherapy services to commissioners.

This document will:

Assist in the analysis of the distribution of competences between roles in a paediatric MSK team and

can suggest areas where new roles may be able to deliver the service more effectively

6

Enable the identification of a range of competences that may be needed to deliver a service and

where there are gaps or overlaps

Enable individuals to be clear about their role and responsibilities

Assist in the analysis of a role in more detail than a KSF role outline and so be useful in writing job

specifications, recruitment selection and role design

Provide a guide to the range of knowledge and skills a physiotherapist needs in order to work at a

safe and competent level when working with children

Help higher educational institutes identify the level of knowledge needed for newly qualified

graduates.

Introduction References

2. BSPAR, BSPAR position statement on professionals working in paediatric rheumatology. Accessed

05/03/2019: Rheumatology, 2008. 47: p. 743-4.

3. CSP, Managing Performance Issues. Accessed 05/03/2019: 2011.

4. Fey, M. and R. Miltner, A competency based orientation programme for new graduate nurses. Journal

of Nursing Administration, 2000. 30(3): p. 126-32.

5. APCP, Working with Children – Guidance on good practice. Accessed 05/03/2019:

6. CSP, Quality Assurance Standards for physiotherapy service delivery. Accessed 05/03/2019: 2013.

7. CSP, Code of Members' Professional Values and Behaviour. Accessed 05/03/2019: 2011.

8. CSP, Physiotherapy Framework: putting physiotherapy behaviours, values, knowledge & skills into

practice. Accessed 05/03/2019: 2013.

9. HCPC, The standards of proficiency for physiotherapists. Accessed 05/03/2019: 2013.

10. DH, National service framework: children, young people and maternity services: Core Standards.

Accessed 05/03/2019: 2004.

11. CWDC, The Common Core of skills and knowledge. Accessed 05/03/2019:

1. Foster, H. and L. Kay, Examination skills in the assessment of the musculoskeletal system in

children and adolescents. Current Paediatrics, 2003. 13: p. 341-4.

https://www.researchgate.net/publication/5516840_BSPAR_position_statement_on_professionals_working_in_paediatric_rheumatology

https://www.csp.org.uk/publications/managing-performance-issues-resource-pack

https://apcp.csp.org.uk/publications/working-children-guidance-good-practice

https://www.csp.org.uk/publications/quality-assurance-standards-physiotherapy-service-delivery

https://www.csp.org.uk/publications/code-members-professional-values-and-behaviour

https://www.csp.org.uk/professional-clinical/cpd-and-education/professional-development/professional-frameworks

https://www.csp.org.uk/professional-clinical/cpd-and-education/professional-development/professional-frameworks

https://www.hcpc-uk.org/standards/standards-of-proficiency/physiotherapists/

https://www.gov.uk/government/publications/national-service-framework-children-young-people-and-maternity-services

https://webarchive.nationalarchives.gov.uk/20120202142536/http:/www.cwdcouncil.org.uk/common-core

7

The Spine Italics- Generic knowledge. Non-italics- Paediatric specific knowledge

Paediatric Spine

Knowledge and Skills Competency Levels

Element + Criteria F I P A E n/a Date Initials

SPINE HISTORY- The physiotherapist is

able to obtain an accurate clinical history

from the parent, child or young person

presenting with signs and symptoms in

the area of the temporomandibular joint

(TMJ), upper limb and spine:

Presenting complaint and description of

symptoms

Severity / irritability of the problem (using

valid age appropriate assessment tools)

Chronological relevant sequence of

events and symptoms, including

identification of possible predisposing

factors / mechanism of injury

Joint specific questions for example, early

morning stiffness and swelling may

indicate JIA [1]

Red Flags:

Top tips for back pain

[2, 3]

Current / past medications Medical history and appropriate review of

symptoms

Birth history and its relevance Establish rate and stage of

growth/skeletal maturation/puberty

Consideration of appropriate height /

weight ratio

http://www.pmmonline.org/page.aspx?id=341

http://www.pmmonline.org/doctor/joint-pain-by-site/back-pain/top-tip-back

8

Paediatric Spine

Knowledge and Skills

Competency Levels


Family history and its relevance Social history (school / competitive / social

activities, and amount of time spent in

front of technology)

[4]

Psychosocial factors / yellow flags and

wellbeing / self-perception indicators [5]

Any neurological symptoms (i.e. Gait

changes, bladder / bowel symptoms) [6]

Formulate a provisional diagnosis that

may guide the objective examination

SPINE ANATOMY, PHYSIOLOGY AND

BIOMECHANICS- The physiotherapist

has knowledge of and can describe the

following:

Neuroanatomy of the cervical, thoracic,

lumbar and sacral plexus

Dermatomes and myotomes of the spine,

upper and lower limb

The surface anatomy of the muscles and

tendons relating to the spine and pelvis

Normal development of the spine from

utero to skeletal maturity, including

ossification centres [7]

Functional ranges of normal movement of

the spine, TMJ and shoulder complex

Biomechanics of the spine.

Awareness of different posture styles e.g.

Flat back, lordotic, kyphotic

Mechanisms that produce different types

of mechanical pain or dysfunction of the

spine e.g. sport that involves repetitive

hyperextension [6]

Influence of age on fracture healing time

[8]

Intrinsic factors which may be contributing

to pathologies e.g. age, skeletal

immaturity, pre/post menarche,

ligamentous laxity, weak musculature,

underlying conditions [9]

9

Paediatric Spine


Competency Levels


Anatomical differences in the immature

skeleton:

The child’s skeleton is different from the

adults because bones are more elastic

and pliable, and have growth plates

(physes). The physis will change with age,

becoming weaker as the child grows.

Damage to the physis may be caused by

trauma, infection, tumour, radiation or from

stress injuries. Physeal injuries are more

common in adolescence. [10, 11]

Extrinsic factors which may be contributing

to pathologies (e.g. activities (sports

frequency / intensity / complexity / level /

position of play / training surface), lifestyle,

type of school bag, position in utero, birth

history, trauma or repetitive postures) [6,

12-14]

SPINE EXAMINATION- The

physiotherapist is able to perform an

accurate physical examination of patients,

considering the relevance of test to child’s

age including the following:

Use of Paediatric Gait, Arms, Legs, Spine

(pGALS) as a screening tool.

[15, 16]

Observations of asymmetrical gait,

swelling, rash, limb deformities /

asymmetry, dysmorphic features,

abnormal posturing. Asymmetry of

shoulder height, scapular prominence,

flank crease or pelvis. [17, 18]

Accentuated alignment / posture in sitting /

standing e.g. Kyphosis

Midline defects e.g., a hairy patch, dimples or midline haemangiomas suggesting intraspinal anomaly [17, 18]

Abnormal markings e.g. cafe au lait spots. [17]

Identify painful structures and if, symptomatic, palpate appropriate spinal anatomy

https://www.arthritisresearchuk.org/shop/products/publications/information-for-medical-professionals/hands-on/series-5/ho15-series-5.aspx

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Paediatric Spine


Competency Levels


Assessment in the infant of congenital torticollis:

- Assessment of neck positioning (supine/

prone/ supported sitting/ supported standing)

- Assessment of bilateral active cervical

rotation and lateral flexion in infants

- Assessment of bilateral passive cervical

rotation and lateral flexion in infants

- Assessment of muscular strength at the

cervical spine in line with appropriate

developmental progress

- Screening for possible hip dysplasia or spine/

vertebral asymmetry

- Assess for symmetry of neck and hip skin

folds, presence and location of a

sternocleidomastoid (SCM) mass, and size,

shape and elasticity of the SCM mass and

secondary muscles

- Assess for craniofacial asymmetries and

head/ skull shape

- Assessment of classification of Congenital

Muscular Torticollis (Grade 1 -7) [19]

Range of movement tests in particular spinal

mobility e.g. Modified Schober’s test, Adams

forward bend test, and TMJ opening (where

indicated) [6, 20]

SI joint tests e.g. FABER [6] Assessment of joint laxity [21] Leg length Muscle testing length, strength and tone,

including Trendelenburg and hamstring length

(Popliteal angle) [6]

11

Paediatric Spine


Competency Levels


Age appropriate neurological examination

including Babinski, SLR, neurodynamics and

nerve trunk palpation [6, 22-24]

Developmental tests. Appropriate motor skills and

quality of movement for age

Assessment of function in ADL SPINAL DISORDERS- The physiotherapist

understands the epidemiology, pathology,

differential diagnosis and common orthopaedic

management of the following:

Fractures/Trauma

-SCIWORA – Spinal Cord Injury Without

Radiological Abnormalities

-Occiput C1 injury

-Fractures of the Atlas

-Atlantoaxial injuries

-Atlantoaxial Rotary Subluxation

-Ligamentous Disruption of the Atlantoaxial joint

-Odontoid fractures

-Traumatic Spondylolisthesis of C2 (Hangman

fracture)

-Sub axial injuries (C3-7)

-Posterior Ligamentous Injuries

-Wedge compression fractures

-Facet dislocations [25]

Non-Traumatic Atlantoaxial Instability -Achondroplasia -Larsen’s -Down’s syndrome -Grisel -Ehlers Danlos [18, 26]

Basilar Impression

An invagination of the base of the skull into the

posterior fossa with compression of the brainstem

and cerebellar structures into the foramen

magnum: present in Arnold Chiari malformation,

Syringomelia, Osteogenesis Imperfecta

conditions.[18, 20]

12

Paediatric Spine


Competency Levels


Congenital Muscular Torticollis

Congenital muscular torticollis (CMT) is an

idiopathic postural deformity evident shortly after

birth, typically characterized by lateral flexion of

the head to one side and cervical rotation to the

opposite side due to unilateral shortening of the

sternocleidomastoid muscle. CMT may be

accompanied by other neurological or

musculoskeletal conditions

[18, 19]

Altered skull shape

Plagiocephaly / Brachycephaly / Scaphocephaly

(often associated with other conditions e.g.

Torticollis, Downs syndrome)

Congenital Vertebral Defects

Congenital deformities of the spine are spinal

deformities typically at birth resulting from

anomalous vertebral development in the embryo,

e.g. hemivertabrae, wedge or butterfly vertebrae.

May result in congenital scoliosis / congenital

kyphosis.

VACTERL – VACTERL association is a disorder

that affects many body systems. VACTERL

stands for vertebral defects, anal atresia, cardiac

defect, trachea-oesophageal fistula, renal

anomalies and limb abnormalities.

Klippel-Feil Syndrome – is a bone disorder

characterised by the abnormal fusion of two or

more spinal bones in the cervical vertebrae. The

vertebral fusion is present from birth. [18, 20]

Scoliosis

Idiopathic (infantile / juvenile / adolescent),

congenital, neuromuscular (cerebral palsy, spina

bifida, dystrophies), syndromic (Marfans,

Osteogenesis Imperfecta). [17, 18]

13

Paediatric Spine


Competency Levels


Osteochondroses:

Scheuermann’s disease is osteochondroses of

the anterior vertebrae and is the most common

cause of kyphotic deformity in adolescence. It

affects male and females equally and the

aetiology is unknown. The onset usually occurs

just prior to puberty and is commonly attributed to

poor posture, causing delay in diagnosis and

treatment. Most adolescents are asymptomatic

and cosmesis is their chief presenting complaint.

However, pain may be present, especially with

prolonged sitting and exercise. On clinical

examination, the kyphosis may be thoracic or

thoracolumbar. The kyphosis is fixed and remains

evident on hyperextension and flexion of the

spine, distinguishing Scheuermann’s from

postural kyphosis which disappears with forward

flexion. [6, 17, 18, 27]

Spondylolysis:

Is a defect in the pars interarticularis and most

commonly affects the fifth and fourth lumbar

vertebrae. The majority of cases represent a

fatigue or stress fracture in the pars

interarticularis. It is more common in boys and in

athletes participating in sports involving repetitive

extension and flexion e.g. fast bowlers in cricket,

gymnasts and competitive swimmers. [6, 17, 18,

28]

Spondylolisthesis:

Occurs with bilateral pars defects and is defined

by forward translation of one vertebra on the next

caudal segment. [6, 17, 18]

JIA (juvenile idiopathic arthritis)

Symptoms of joint pain, swelling, tenderness,

warmth, and stiffness that last for more than 6

continuous weeks.

Potential TMJ involvement [29]

14

Paediatric Spine


Competency Levels


Enthesitis Related Arthritis (HLA-B27)

Spodyloarthropathies are more common in boys

and are frequently associated with the genetic

marker HLA-B27. Spine and sacroiliac joint

involvement is more common in the juvenile

idiopathic arthritis subtype- Enthesitis Related

Arthritis (ERA) than other childhood arthritis, but

axial disease is often a late manifestation.

Reactive arthritis, psoriatic arthritis and

inflammatory bowel disease may also present

with spondyloarthropathy.

Children may present with back or buttock pain

but the typical history of morning stiffness,

gradual resolution of pain with activity and clinical

exam findings of limited lumbar mobility (Schober

test), sacroiliac joint tenderness and peripheral

enthesitis

[6, 29]

Lumbar disc herniation

Disk protrusion (primarily L4-5 or L5-S1) is more

common in adolescents than in young children.

Children and adolescents with disc herniation

present with low back, buttock or hip pain

worsened by bending forward, coughing,

sneezing or straining with bowel movements. On

examination, there is often limitation of forward

flexion and positive straight-leg raise test.

Weakness in a myotome distribution, numbness

in a dermatomal distribution and diminished

reflexes are not common in adolescents with disc

herniation.

Symptomatic treatment with rest, analgesics, and

physical therapy is successful in the majority of

patients but adolescents do not fare as well with

conservative therapy as do adults. Early micro

discectomy for patients who do not respond to

conservative treatment is advocated by some

surgeons while others reserve operative therapy

for progressive neurologic deficit. [6]

Postural back pain [30-32]

15

Paediatric Spine


Competency Levels


Soft tissue injuries Chronic pain / Pain amplification syndrome

Many paediatric patients with severe chronic

musculoskeletal pain do not have an identified

cause. Cause of amplified musculoskeletal pain is

unknown, but minor trauma, underlying chronic

illnesses and psychological distress have been

associated. Typically, an affected child has pain

at multiple sites in addition to back pain. [6, 33]

SPINE DIFFERENTIAL DIAGNOSIS- The

physiotherapist shows awareness of the

following:

Possible serious pathology including exclusion of

red flags and ‘non-accidental injury’ (NAI)

Bone cysts Tumours: Benign and malignant tumours e.g.

Ewing's Sarcoma [22]

Cord tethering Congenital malformations e.g. hemivertebrae,

Spina Bifida [18]

Infections: Discitis, osteomyelitis, Sickle cell crisis

Discitis is uncommon and usually affects the

lumbar region in children below 5 years old.

Aetiology is thought to be a bacterial infection,

usually Staphylococcus aureus. Children may

present with irritability, refusal to bear weight, a

limp, back pain or abdominal pain. Fever is not

always present. Children have pain on flexion or

refusal to flex the spine. There may be loss of

lumbar lordosis. [6, 18]

SPINE INVESTIGATIONS-

The physiotherapist is aware of the appropriate

investigations for diagnosis of spinal conditions

and has a basic understanding of and can

interpret the following:

Ultrasound X-ray MRI / CT

Appropriate blood tests

Nerve conduction study

16

Paediatric Spine


Competency Levels


SPINE OUTCOME MEASURES

The physiotherapist has an awareness of

appropriate, valid and reliable paediatric outcome

measures, relevant to age and specific condition

(pain, function and quality of life) Severity / irritability of the problem using valid and

reliable pain scale for age of child: Pediatric Pain

Profile,

Wong-Baker FACEs pain rating scale.

The Bath Adolescent Pain questionnaire (BAPQ)

[34]

Paediatric outcome measure e.g. Function and

quality of life scores: CHAQ/ PEDI/PEDSQL

[35] Outcome Measures Survey 2017

Plagiocephaly assessment Brachycephaly assessment Scaphocephaly assessment Argenta classification of plagiocephaly Muscle function scale for torticollis

SPINE MANAGEMENT

The physiotherapist is able to make a diagnosis

of the clinical condition based on the above

history, examination and investigations

The physiotherapist has knowledge of appropriate

national guidelines where available: e.g. JIA

- SIGN management of chronic pain in children

and young people

- BSPAR AHP standards of care for JIA

- BSPAR guidelines for the therapy management of children and young people with JIA

- Guidance for management of joint hypermobility syndrome

- Physical therapy management of CMT

[19, 29, 33]

http://wongbakerfaces.org/

https://www.gov.scot/publications/management-chronic-pain-children-young-people/

https://www.gov.scot/publications/management-chronic-pain-children-young-people/

https://www.yumpu.com/en/document/view/5727247/allied-health-professional-ahp-standards-of-care-for-bspar

https://docplayer.net/9171305-Guidelines-for-the-therapy-management-of-children-and-young-people-with-juvenile-idiopathic-arthritis.html



17

Paediatric Spine


Competency Levels


The physiotherapist has understanding of

treatment options for the condition and

understands when it is appropriate for onward

referral e.g. clinical specialist physiotherapist,

occupational therapist, orthotist, podiatrist,

rheumatologist, spinal orthopaedic consultant or

paediatrician.

10 top tips for hypermobility

My pain toolkit for teenagers

[3, 38] The physiotherapist uses age appropriate

exercises and therapy to aid rehabilitation

including:-range of movement exercises, exercise

prescription, taping techniques, strength and

conditioning. Advice on activity modification if

needed.

- APCP symptomatic hypermobility

- Hints and tips for using a laptop computer,

smartphone, tablet, games console, desktop

computer.

Posture e-learning:

http://www.healthyworking.com/move/

The benefits of good posture:

https://www.youtube.com/watch?v=OyK0oE5rwF

Y

[14, 31, 32, 39-42] The physiotherapist is able to explain the nature

of the condition to the patient, their family and

carers together with expected outcomes and

possibly long term implications if appropriate.

http://www.pmmonline.org/patient-information.aspx?id=710

http://www.ergonomics4kids.com/downloads.php


https://www.youtube.com/watch?v=OyK0oE5rwFY


18

References

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2. PMM, Red flags. Paediatric Musculoskeletal Matters. Accessed 13/07/2018: http://www.pmmonline.org/page.aspx?id=341. Newcastle university and Northumbia University, 2018.

3. PMM, Information for clinicians. Paediatric Musculoskeletal Matters. Accessed 28/08/2018.: http://www.pmmonline.org/doctor/resources/information-for-clinicians. Newcastle university and Northumbia University, 2018.

4. Straker, L.M., et al., Computer Use and Habitual Spinal Posture in Australian Adolescents. Public Health Reports, 2007. 122(5): p. 634-43.

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6. Houghton, K.M., Review for the generalist: evaluation of low back pain in children and adolescents. Pediatric Rheumatology, 2010. 8(28): p. 1-8.

7. Sanders, J.O., Normal growth of the spine and skeletal maturation. Seminars in Spine Surgery, 2015. 27(1): p. 16-20.

8. Lindaman, L.M., Bone healing in children. Clin Podiatr Med Surg, 2001. 18(1): p. 97-108. 9. Quatman, C.E., et al., The effects of gender and maturation status on generalized joint laxity in young

athletes. J Sci Med Sport, 2008. 11(3): p. 257-63. 10. Staheli, L.T., Practice of Pediatric Orthopaedics. 2nd Edition. Lippincott Williams & Wilkins, 2006: p. 258-60. 11. Alshryda, S., S. Jones, and A. Banaszkiewicz, Physis and leg length discrpancy. Postgraduate Paediatric

Orthopaedics: The Candidate's Guide to the FRCS (Tr and Orth) Examination. Cambridge University Press., 2014: p. 231-40.

12. Haselgrove, C., et al., Perceived school bag load, duration of carriage, and method of transport to school are associated with spinal pain in adolescents: an observational study. Aust J Physiother, 2008. 54(3): p. 193-200.

13. Silva, A., et al., Implications of high-heeled shoes on body posture of adolescents. Rev Paul Pediatr 2013. 31(2): p. 265-71.

14. Yamato, T.P., et al., Do schoolbags cause back pain in children and adolescents? A systematic review. Br J Sports Med, 2018.

15. Foster, H.E. and S. Jandial, pGALS - A screening examination of the musculoskeletal system in school-aged children. Reports on the rheumatic diseases series 5, 2008(15): p. 1-8.

16. Foster, H.E., et al., Musculoskeletal screening examination (pGALS) for school-age children based on the adult GALS screen Arthritis Care Research, 2006. 55(5): p. 709–16.

17. Staheli, L.T., Practice of Pediatric Orthopaedics. Lippincott Williams & Wilkins, 2001: p. 11, 20, 159-182. 18. Diab, M. and L.T. Staheli, Practice of Paediatric Orthopaedics. Lippincott Williams & Wilkins, 2016. 3rd

Edition: p. 24-5, 27-46, 48-50, 52, 54-55. 19. Kaplan, S.L., C. Coulter, and L. Fetters, Physical therapy management of congenital muscular torticollis: an

evidence-based clinical practice guideline: from the Section on Pediatrics of the American Physical Therapy Association. Pediatr Phys Ther, 2013. 25(4): p. 348-94.

20. Lee, M., J. Hashem, and a. et, Congenital Spinal Deformity. Medscape, 2017. 21. Malfait, F., et al., The 2017 international classification of the Ehlers-Danlos syndromes. Am J Med Genet C

Semin Med Genet, 2017. 175(1): p. 8-26. 22. Wilson, P., J. Oleszek, and G. Clayton, Pediatric Spinal Cord Tumors and Masses. J Spinal Cord Med 2007.

30(suppl 1): p. S15-20. 23. Nee, R.J. and D. Butler, Management of peripheral neuropathic pain: Integrating neurobiology,

neurodynamics, and clinical evidence. Physical Therapy in Sport, 2006. 7(1). 24. Edwards, S., Rock, paper, scissors, ok? Accessed 28/08/2018:

https://twitter.com/hashtag/rockpaperscissorsok. 2018. 25. Lustrin, S., et al., Pediatric Cervical Spine: Normal Anatomy, Variants, and Trauma. RadioGraphics, 2003.

23(3): p. 539-59. 26. Ghanem, I., et al., Pediatric cervical spine instability. Journal of Children's Orthopaedics 2008. 2(2): p. 71-84. 27. Palazzo, C., F. Sailhan, and M. Revel, Scheuermann's disease: an update. Joint Bone Spine, 2014. 81(3): p.

209-14. 28. Sundell, C.G., et al., Clinical examination, spondylolysis and adolescent athletes. Int J Sports Med, 2013.

34(3): p. 263-7.

https://www.arthritisresearchuk.org/arthritis-information/conditions/juvenile-idiopathic-arthritis/what-is-juvenile-idiopathic-arthritis.aspx

https://www.arthritisresearchuk.org/arthritis-information/conditions/juvenile-idiopathic-arthritis/what-is-juvenile-idiopathic-arthritis.aspx

http://www.pmmonline.org/page.aspx?id=341

http://www.pmmonline.org/doctor/resources/information-for-clinicians

https://twitter.com/hashtag/rockpaperscissorsok

19

29. Davies, K., et al., BSPAR Standards of Care for children and young people with juvenile idiopathic arthritis. Rheumatology, 2010. 49(7): p. 1406-8.

30. Kamper, S.J., T.P. Yamato, and C.M. Williams, The prevalence, risk factors, prognosis and treatment for back pain in children and adolescents: An overview of systematic reviews. Best Pract Res Clin Rheumatol, 2016. 30(6): p. 1021-36.

31. Calvo-Muñoz, I., A. Gómez-Conesa, and J. Sánchez-Meca, Preventive physiotherapy interventions for back care in children and adolescents: a meta-analysis. BMC Musculoskeletal Disorders, 2012. 13(152): p. 1-19.

32. Dalkilinç, M., The benefits of good posture. Accessed 10/07/2018: https://www.youtube.com/watch?v=OyK0oE5rwFY. 2015.

33. Scottish Government, Management of chronic pain in children and young people: A national clinical guideline. Accessed 17/07/2018: https://beta.gov.scot/publications/management-chronic-pain-children-young-people/. 2018.

34. Eccelston, C., et al., The Bath Adolescent Pain Questionnaire (BAPQ): Development and preliminary psychometric evaluation of an instrument to assess the impact of chronic pain on adolescent. Pain, 2005. 118(1-2): p. 263-70.

35. APCP, Paediatric Outcome Measures. Accessed 17/07/2018: http://apcp.csp.org.uk/publications/paediatric-outcome-measures. 2018.

36. Watkins, C., Worcestershire Health and Care NHS Trust Paediatric Musculoskeletal Outcome Measures Survey. Accessed 17/07/2018: http://apcp.csp.org.uk/documents/apcp-newsletter-issue-20-march-2017. APCP Newsletter, 2017(20): p. 59-66.

37. Spermon, J., R. Spermon-Marijnen, and W. Scholten-Peeters, Clinical classification of deformational plagiocephaly according to Argenta: a reliability study. J Craniofac Surg, 2008. 19(3): p. 664-8.

38. Moore, P., J. Bird, and F. Cole, My pain toolkit for young people living with pain Accessed 19/07/2018: https://www.parksmed.co.uk/wp-content/uploads/2013/09/Pain-Toolkit-for-teenagers.pdf. 2012.

39. CHOC, https://www.choc.org/orthopaedics/spine-center/scoliosis/ Accessed: 29/06/2018. 2018. 40. Berdishevsky, H., et al., Physiotherapy scoliosis-specific exercises - a comprehensive review of seven major

schools. Scoliosis Spinal Disord, 2016. 11(20). 41. Healthy Working MOVE, Healthy posture elearning. Accessed 10/07/2018. http://www.ergonomics4kids.co.uk/

Links to: http://www.healthyworking.com/move/. 2008. 42. APCP, Parent Leaflet - Symptomatic Hypermobility. Accessed 28/08/2018:

https://apcp.csp.org.uk/documents/parent-leaflet-symptomatic-hypermobility-2012. 2012.


https://beta.gov.scot/publications/management-chronic-pain-children-young-people/

http://apcp.csp.org.uk/publications/paediatric-outcome-measures

http://apcp.csp.org.uk/publications/paediatric-outcome-measures

http://apcp.csp.org.uk/documents/apcp-newsletter-issue-20-march-2017

https://www.parksmed.co.uk/wp-content/uploads/2013/09/Pain-Toolkit-for-teenagers.pdf

https://www.choc.org/orthopaedics/spine-center/scoliosis/

http://www.ergonomics4kids.co.uk/


https://apcp.csp.org.uk/documents/parent-leaflet-symptomatic-hypermobility-2012

20

Acknowledgments

The authors would like to express their sincere thanks to Dr Grant Symes for allowing the use of the

grading system that was first implemented in the “Resource Manual and Competences for Extended

Musculoskeletal Physiotherapy Roles”.

Contributing Members Hazel Bartley – Highly Specialised Paediatric Physiotherapist, Evelina Children’s Hospital, London Kevin Dann – Paediatric Physiotherapist, Basildon and Thurrock University Hospital Vicky Easton – Clinical Specialist Physiotherapist, Norfolk and Norwich University Hospital, Foundation Trust Fiona Eckford - Extended Scope Physiotherapist, Paediatric Orthopaedics, Northern Devon Healthcare Trust / Royal Devon & Exeter Foundation Trust Heather Foster – Lead Physiotherapist University of Bath; Clinical Director The Young Athlete Clinic, Bath Rachel Harrington – Clinical Specialist Physiotherapist, Musculoskeletal Paediatrics – Harley Street Pierette Melville – Highly Specialist Physiotherapist, Musculoskeletal Paediatrics NHS Fife Jenny Seggie - Extended Scope Physiotherapist, Musculoskeletal Paediatrics East Kent Hospitals University Foundation Trust Caroline Watkins – Advanced Paediatric Physiotherapist, Musculoskeletal and Orthopaedic Paediatric Physiotherapy Clinical Lead, Worcestershire Health and Care Trust. ______________________________________________________________________

All children benefit from supportive footwear. When you are buying shoes look for the following:

Shoes which are stiff around the heel

A sturdy sole to act as a shock absorber

Soft uppers, preferably with laces or buckles

Try to avoid:

Shoes with no support around the heel

Thin soles

Shallow uppers

Slip-on shoes

This does not mean that other shoes cannot be worn for short periods of time or special occasions.

Association of Paediatric Chartered Physiotherapists

www.apcp.org.uk

Published: October 2012

Review: October 2015

Symptomatic Hypermobility

Association of Paediatric Chartered

Physiotherapists

What is Hypermobility?

Hypermobility is a description of joint movement. Hyper means ‘more’ and mobility means ‘movement’. Ligaments hold joints together and in hypermobility, ligaments are lax and joints have more flexibility. It is not an illness or a disease, just the way someone is put together. It is

considered a normal finding by medical professionals.

How common is it?

Most children are flexible and some more so than others. The majority of children will become less supple as they get older but a small percentage will remain very flexible. This is more common if their parents are still very flexible.

Studies have shown that 71% of children under 8 and 55% of 4-14 year olds are hypermobile (de Inocencio et al 2004)

Common parental concerns

Children may initially take longer to achieve crawling, walking and running and may be more likely to bottom shuffle (reference?) Other frequent findings are:

Clumsiness and frequent falls

Flat feet

Clicky joints

Tiredness

Reluctance to walk

Pain

Difficulty with handwriting, eating and dressing

Is there cause for concern?

Many children with hypermobility experience no symptoms or difficulties and is essential in a lot of sports.

It is not known why some children have more symptoms that others and it is not necessarily related to the degree of hypermobility (Leone et al 2009). These problems are mostly caused by poor muscle strength, poor muscle stamina and poor control of joint movement, not the hypermobility itself.

What can I do to help?

A lot of symptoms are caused by weakness so it is important your child is strong and fit.

Encourage normal everyday activities and play, for example

Swimming

Cycling

Play parks

PE

Dance

Pacing

If muscle pain after exercise is a problem, they should not stop being active but pacing activities may help .

Pacing means to gradually increase an activity in order to achieve a goal. Don’t do too much activity on one day but spreads it throughout the week.

Practise

Your child needs to build their muscle strength which takes time and most importantly, practise. Ensure your child does not get overweight as this will stress muscles and joints more.

Pain management

Aches and pains associated with hypermobility are usually a result of muscle fatigue, not damage or injury. A warm bath or a hot water bottle may help. Try not to focus on pain and distract your child from dwelling on it.

When to seek advice

Physiotherapy can be useful after an injury to give advice and exercises in order to return to normal activities.

Seek advice from your GP if you are concerned your child is experiencing frequent or severe pain

Worcestershire Health and Care NHS Trust Paediatric Musculoskeletal Outcome Measures Survey

Introduction:

‘Worcestershire Health and Care NHS Trust’ is commissioned to provide paediatric physiotherapy (PT) to children and young people aged 0-18 years within Worcestershire. Paediatric musculoskeletal (MSK) PT is provided within the Worcestershire paediatric community PT team and at present this consists of a small team of staff offering PT to children in six clinic locations across the county. Referrals are received from GP’s, Consultants and health care professionals within Worcestershire. Referrals are also received from Consultants and health care professionals based outside of Worcestershire typically from acute secondary and tertiary centres. These include Birmingham, Bristol, Oswestry, Dudley and Cheltenham where there are paediatric orthopaedic and rheumatology consultant led services.

The Worcestershire paediatric PT team has transferred onto electronic notes this year (2016). This move has provided the service with the opportunity to develop pathways to improve the evaluation of patient care. This service development has included working towards benchmarking outcome measure use in paediatric MSK patients.

‘The Association of Paediatric Chartered Physiotherapists’ (APCP) holds an online database of paediatric outcomes measures (APCP, 2016a). This is an excellent central resource for APCP members where there is a facility to provide comments on the use of outcome measures within the database and make recommendations on other outcome measures used by members. The database does not currently include information on the frequency of the outcome measure use in paediatric MSK clinical practice. Therefore the Worcestershire service planned to establish the use of the available and any additional outcome measures in paediatric MSK clinical practice via an online survey.

Aims and Objectives:

The aim of the survey was to benchmark outcome measure use in ‘Chartered Society of Physiotherapy’ (CSP) members treating paediatric MSK patients, to provide recommendations for improvements in outcome measure use in the Worcestershire paediatric MSK PT service and raise

members treating paediatric MSK patients.

The objectives were:1. To identify the demographics and place of work of CSP PT’s treating paediatric MSK pts.

2. To identify the grade and specialism’s of CSP PT’s treating paediatric MSK pts.

3. To identify how patients are accessing paediatric MSK physiotherapy and the weighting ofpaediatric MSK patients of PT’s caseloads.

4. To identify the frequency of use of the outcome measures described on the APCP database.

5. To identify the frequency of use of other available outcome measures not described on the APCPdatabase.

6. Use the results from this survey to make developments in the use of outcome measures in theWorcestershire Paediatric MSK PT teams and use new pathways developed for electronic notesto enable electronic data collection.

7. Share the results of the survey within the paediatric MSK network.

Methodology:

A survey was designed using ‘Survey Monkey’ and consisted of 10 questions. The questions were a mixture of open and closed questions including likert scoring. Half the questions had the opportunity to add comments and where ‘other’ was an option, space was provided to report on this. A survey monkey link was emailed out to APCP members and posted on the iCSP MSK and Paediatric pages. A request for PT’s treating paediatric MSK patients to complete the survey (via iCSP or emailing [email protected] was printed in the ‘information exchange’ section of ‘Frontline’ magazine in the issues 5th October 2016 to 7th December 2016. The survey took place from 18th April 2016 to 12th December 2016.

Results:

There were 104 completed responses received (including 2 email requests for the survey) and

� � Data summarised

by APCP regions (CSP, 2016a).

Scotland 5.8% (6)

Northern Ireland 0% (0)

North West 11.5% (12)

North East 6.7% (7)

Wales 6.7% (7)

West Midlands 7.7% (8)

Trent 4.8% (5)

South West 3.8% (4)

London 26.9% (28)

East Anglia 6.7% (7)

South East 12.5% (13)

Ireland 2.9% (3)

Self employed 0.96% (1)

1.9% (2)

No response 0.96% (1)� �

� �a. Of the respondents 100 (96.2%) were Paediatric physiotherapists, one worked as a

paediatric and adult MSK PT, and three did not specify.

b. Job role / titles of respondents were:

c. Respondents banded their role as:

d.

band 6 and 1 was a band 8a. �Other responses included: self referral (10), schools, pain team, AHP’s, other consultants etc.

�

Parent Group % <30% 30-70% >70% Total

Paediatric MSK 21.6% (22) 60.8% (62) 17.6% (18) 100% (102)

Paediatric Orthopaedics

56.7% (55) 38.1% (37) 5.2% (5) 100% (97)

Paediatric Rheumatology

88.4% (84) 6.3% (6) 5.3% (5) 100% (95)

Other: 47 responses.

Including: neuro-developmental, respiratory, neonatal, CFS, chronic pain.

40 responses stated the % of their ‘other’ patient group. �

Always Often Sometimes Rarely Never Total

FPS-R 11.7% (12) 26.47% (27)

21.57% (22)

19.61% (20)

20.59% (21)

100% (102)

CAPE & PAC 0% (0) 0.97% (1) 0% (0)15.53% (16)

83.50% (86)

100% (103)

TOM 1.96% (2) 1.96% (2) 7.84% (8)12.75% (13)

75.49% (77)

100% (102)

Comments (total no.): summary

FPS-R (13): use Wong and baker, use VAS, use dependant on age of child.

TOM (7): There’s a new TOM addition, some services planning to start using TOM.

� � (APCP, 2016a).


PEDI 0% (0) 1.94% (2) 12.62% (13)26.21% (27)

59.22% (61)

100% (103)

GAS 7% (7)16.50% (17)

21.36% (22)20.39% (21)

34.95% (36)

100% (103)

COPM 0.98% (1) 1.96% (2) 1.96% (2) 3.92% (4)91.18% (93)

100% (102)

AusTOMs0% (0) 0.97% (1) 0.97% (1) 2.91% (3) 95.15%

(98)100% (103)

EKOMS 1.94% (2) 0% (0) 1.94% (2) 1.94% (2)94.17% (97)

100% (103)

Comments (total no.): summary

complex pts, botox pts, never in MSK all other community pts. COPM (4): used by OT’s, use this as a team to report on for commissioners. AusTOMS (1): use

� �


TU&G 0% (0)9.71%

(10)24.27% (25)

25.24%

(26)

40.78%

(42)100% (103)

PBS 0.98% (1) 8.82% (9) 20.59% (21)17.65%

(18)

51.96%

(53)100% (102)

10MWT 0% (0) 8.82% (9) 23.53% (24)29.41%

(30)

38.24%

(39)100% (102)

6MWT 0.96% (1) 6.73% (7) 23.08% (24)25.96%

(27)

43.27%

(45)100% (104)

PedsQL 2.97% (3) 3.96% (4) 11.88% (12)22.77%

(23)

58.42%

(59)100% (101)

Eq-5D-Y 0.99% (1) 1.98% (2) 3.96% (4)17.82%

(18)

75.25%

(76)100% (101)

WBFPS9.71%

(10)

18.45%

(19)20.39% (21)

10.68%

(11)

40.78%

(42)100% (103)

Comments (total

no.): summary

TU&G (2). PBS (1): use movement ABC instead of PBS. 10MWT (1).

expensive to get hold of and hence never implemented. Eq5D-Y (5):

No longer used, stopped using in favour of TOMS. WBFPS (2).� �Always Often Sometimes Rarely Never Total

Spine 12.66% (10) 7.59% (6) 7.59% (6) 8.86% (7)

63.29%

(50) 79

Upper Limb 16.25% (13) 11.25% (9) 7.50% (6) 7.50% (6) 57.50% (46) 80

Hip 17.33% (13) 9.33% (7) 4% (3) 5.33% (4) 64% (48) 75

Knee 20% (15) 13.33% (10) 5.33% (4) 5.33% (4) 56% (42) 75

Ankle/Foot 19.44% (14) 13.89% (10) 2.78% (2) 5.56% (4) 58.33% (42) 72

Other 14.49% (10) 28.99% (20) 5.80% (4) 1.45% (1)

49.28%

(34) 69

Large amount of comments for this section, I have noted outcome measures / Ax tools

not previously commented on (objective markers have not been listed). Spine (23):

My MOP, SARROM, TUSS, ODI, the young spine questionnaire, Oswestry back pain

UEFS, OBBP measures, Oxford shoulder score, Kapangi scale. Hip (23): Goldsmith,

Edingburgh gait score. Knee (30): QASL, LEFS, care aims, KOOS-child, Norwich Ax.

Ankle / foot (28): FPI, Y- balance test, balance excursion, FLEE, Lysholm, SEBT, 3 hop

distance test, oxford foot ankle questionnaire. Other (35): Bruinicks oswestry balance Ax,

MMT3/8, Functional disability index, Chaq, ASK, Quebec, Patient global impression of

change, Pgals, Jaqq, CMAS.

� � �Scale’ (PSFS) as a quick and easy to use measure in MSK pts (2), request for publication of results

to help support outcome measure PT service development (6), challengers of suitable outcome

measures for paediatric population (1), use of objective markers (3) / patient set goals as alternatives

(1), use of VAS, number of treatments and level of improvement on D/C as service outcome (2).

Discussion:

The survey had responses from all APCP regions except Northern Ireland, with the highest

proportion of survey respondents working in the London region (26.9%). Over half of respondents

(52.4%) worked in community / health centre locations, and 96.6% were working as paediatric

of these were band 7’s. Referrals to services were typically being made by a range of consultants,

GP’s, HPC’s and other professionals, but 10 respondents identifying ‘self referral’ as an access route

to services.

Overall there were more respondents working with MSK patients (30-70% MSK caseload: 60.8%,

>70% MSK caseload: 17.6%) compared with orthopaedic and rheumatology patients. The 20.5

with ‘other’ patient groups from CFS / chronic pain, to neuro-developmental / respiratory. The

percentage split of caseload where other was selected was given by 40 of these 47 respondents and

the ‘other’ caseload ranged from 10-80%. The data gained is not accurate enough to draw further

conclusions regarding the level of specialisation in MSK.

found that the Faces Pain Scale - Revised (FPS-R) was the most used (always 12%, often 27%

and sometimes 22%) outcome measure for clinicians treating MSK / orthopaedic / rheumatology

patients. The Faces Pain Scale is quick, free and used to measure pain (APCP, 2016b), so

this surveys results would correspond with this scales suitability for the patients treated by the

sample surveyed, but clinicians made comment that they were using alternatives such as VAS,

and Wong and Baker. The TOM was used regularly by a few of the surveyed clinicians (always

2%, often 2% and sometimes 8%) and the CAPE/PAC was the least used (often 1%, rarely

16%). These outcomes require the purchase of a manual for completion (APCP, 2016c,d) but

the comments received did not state this as a barrier to use. There were positive comments

for CAPE/PAC and TOM where services were planning to introduce these measures and one

service had piloted the TOM but ‘did not feel that it worked well within the paediatric MSK

service’. It would be helpful to gain further information from the clinicians who are using these

measures regularly within MSK / orthopaedic / rheumatology patients to help support future

clinical use.

APCP ‘outcome measure matrix’, found that GAS was the most used (always 7%, often 17%,

sometimes 21%) , followed by PEDI (often 2%, sometimes 13%) for clinicians treating MSK /

PEDI. COPM, AusTOMs and EKOMS were used regularly by a few of the surveyed clinicians,

The responses gained for the listed ‘generic mobility’ and PROMs, demonstrated that clinicians

were using the generic mobility outcomes more than the PROMs (PedsQL and Eq5D-Y) for

paediatric MSK / Ortho / Rheumatology patients (see question 8 results table). PedsQL was

present use. The CSP has previously held a licence for the Eq-5D outcome measure but this has

now expired (CSP, 2016b). The Wong baker faces pain rating scale (WBFPRS) was included in

as either a generic or PROM.

The responses gained for ‘any other outcome measures’ used in MSK / orthopaedic /

A selection of these have been listed in the results section, but further information on the

making recommendations.

ask any questions. The comments provided here alongside previous survey comments showed

how paediatric MSK physiotherapists are keen to share their knowledge of outcome measures

that are working well in their clinical practice. Where there are limitations / barriers to the use of

outcome measures respondents were demonstrating methods to measure effective practice via

alternative means such as objective markers.

Limitations:

The survey was shared via the CSP website, frontline magazine and APCP but only a direct email

the results failing to capture ‘adult MSK physiotherapists’ treating paediatric patients. The survey

design had some limitations particularly for the questions on job role and caseload. This caused

about outcome measures used in MSK / orthopaedic / rheumatology patients, but there is a

possibility that some of the responders included outcome measures used in other specialisms.

Conclusion:

This survey has provided an opportunity to review the use of outcome measures in paediatric

MSK PT and found that a wide range of outcome measures are in clinical use. The results show

by paediatric MSK physiotherapists, including those that have not yet been added to the APCP

outcome measures matrix. The clinical use of outcome measures is an area of opportunity for

continuing to develop quality assurance for our patients (CSP, 2012). The APCP has the facility

to add comments about the experience of using outcome measures and to request the addition

of outcome measures not currently on the website (APCP, 2016a). The use of this facility

provides an opportunity to share and develop clinical practice for outcome measures in all areas

of paediatric PT.

Acknowledgements:

Thank you to all those who have helped in developing this questionnaire including the advice

received from the APCP MSK special interest group. Thank you to the 104 clinicians who gave

their valuable time to complete this survey. It is noted that copying and pasting the survey

monkey outcome measure links would have been time consuming but hopefully informative.

References:

APCP, (2016a). http://apcp.csp.org.uk/publications/paediatric-outcome-measures-online-search

Accessed 12/12/2016

APCP, (2016b). http://apcp.csp.org.uk/documents/faces-pain-scale-revised-fps-r Accessed

12/12/2016.

Accessed 12/12/2016.

Accessed

12/12/2016.

CSP, (2016a). www.csp.org.uk/regions Accessed 12/12/2016.

CSP, (2016b). http://www.csp.org.uk/professional-union/practice/evidence-base/outcome-

experience-measurement/eq5d5l Accessed 12/12/2016

CSP, (2012). http://www.csp.org.uk/publications/quality-assurance-standards Accessed

12/12/2016.

Caroline Watkins

For young people and teenagers living with pain

My Pain ToolkitMy Pain ToolkitMy Pain Toolkit

Does pain stop you from doing the things you enjoy?

Do you struggle to understand your pain?

Do you want your pain to stop controlling you?

If any of these questions are true then this toolkit is for you!

My Pain Toolkit is a simple guide that gives you some handy tips

and skills to help you to understand and manage pain better!

I loved My Pain Toolkit, it wasn't talking at

me, but just giving me some tips and ideas

that others have used to manage their pain.

By Pete Moore and Jessica Bird

www.paintoolkit.org In Canada: www.pipain.com/youthPainToolkit

Canadian Version

Canadian Version. © Pete Moore, Jessica Bird & Dr Frances Cole, January 2014.

Contents

How does your pain affect you?...........................................…… 2

Pain in Canada……………………………………………………… 3

From pain cycle to wellness cycle…….……………………...…… 4

What is pain?.......................................................................…… 7

Tool 1: Acceptance……………………..……………………...…… 9

Tool 2: Build your support team………...…………………….…… 10

Tool 3: Pacing ……………………………..…………………...…… 11

Tool 4: Plan your days……………………...………………….…… 13

Tool 5: Setting goals…………………………..……………….…… 14

Tool 6: Relaxation………………………………..…………….…… 15

Tool 7: Stretching and exercise…………………..…………..…… 17

Tool 8: Be patient……………………………..………………..…… 19

Tool 9: Track your progress…………………..……………….…… 20

Tool 10: Have a setback plan…………………..……………..…… 21

Tool 11: Teamwork………………………………..…………...…… 22

Tool 12: Keeping it up………………………………..………..…… 23

Family support and giving back…………………………………… 25

Stretching & exercise - why it’s good for you…….………...…… 27

Examples of pacing…………..………………………………..…… 28

Example setback plan………………….………………………….. 29

Your stories……………………………………………………..…... 31

Website links, help lines and videos……….………………….…. 33

The Complex Pain Service………………………………….…….. 35

Canadian Version © Pete Moore, Jessica Bird & Dr Frances Cole January 2014 2

How does your pain effect you?How does your pain effect you?How does your pain effect you?

Living with pain can be really difficult. Not only can it affect the things

you do, it can also affect the way you feel, the way you think, and your

relationships with your friends and family.

Below are some of the most common ways that young people say

pain affects them. Does your pain have a similar affect on you?

Really

sad

Snappy

with family Lonely

Nobody Understands

Can’t play

sports

I get told its

all in my head

Can’t go out

with friends

Struggle to

keep up with

school work

Angry

Struggle

to sleep

People treat

me differently

Gain or lose

weight

Are there any more that are

not listed? List them here:

……………………………………

……………………………………

……………………………………

……………………………………

……………………………………

……………………………………

Canadian Version. © Pete Moore, Jessica Bird & Dr Frances Cole, January 2014. 3

Pain in Canada Pain in Canada Pain in Canada

Pain is a problem that is probably more common than you think. In Canada, about one in five people live with persistent pain and many of them are young people and teenagers. But pain doesn’t only affect the people who actually have pain. It also affects their family, friends and work colleagues. So, if you add these people, more than half of the Canadian population is affected by persistent pain!

In British Columbia...

Total population

34,483,000

People with pain

6,897,000

People effected by pain

19,800,000

People with pain

1,000,000

People effected by pain

2,200,000


A lot of young people and teenagers find that having persistent pain

can create a cycle. Look at the pain cycle below - does it seem

familiar?

This cycle means that your pain keeps on

going and things keep getting worse.

The pain cycleThe pain cycleThe pain cycle

Negative thinking Fear of the future Mood swings

Loss of fitness, weak muscles, joint stiffness

Being less active

Problems with friends, relationships & family

Stress, anger, frustration, worry, fear

Create ‘no go’ lists of things you cannot do

Sleep problems & tiredness

Weight gain or loss Medication side effects

Time off School or College

Pain


So, as you can see, your pain can affect you in many different ways. It

affects your:

This is why using only medical treatment and medication doesn’t

always work for persistent pain - it focuses only on the physical

symptoms (aches and pains) and ignores your thoughts, feelings and

behaviour.

Managing pain is like learning any other skill such as learning to play

the guitar or riding a bike - it just takes time and practice! Sometimes

you could get frustrated, but stick with it. It does get easier.

My Pain Toolkit can help you to choose some simple tips and skills

that focus on all these aspects of managing your pain.

To successfully manage pain we need to

focus on ALL parts of your pain!

Thoughts

Feelings

Body

Behaviour


The wellness cycleThe wellness cycleThe wellness cycle

You need to BREAK your pain cycle! By making certain changes to

the way you manage your pain you can gradually break away from

the cycle of pain and move into a new cycle that can lead your life in a

more positive direction that allows you to live a full and happy life

despite your pain.

By following the tools in this toolkit you CAN learn to self-manage

your pain and live within your wellness cycle!


What is pain?What is pain?What is pain?

Pain is like a warning, just like the warning light on a car telling us

something is wrong and needs attention. Pain is our brain’s way of

telling us that we are either harming ourselves or about to harm

ourselves so that we can do something to stop it. For example, when

you touch something hot, the pain makes you move your hand to stop

you burning yourself.

If you do injure yourself, for example breaking an arm, your brain can

keep sending pain messages for a while. This isn’t because your arm

is still being damaged, but as a way to stop you moving it too much so

that it can heal quickly. When the bone has healed, the pain goes

away as your arm doesn't need protecting any more.

There are two types of pain:

Acute pain begins suddenly and doesn’t last for too long.

Persistent pain, sometimes called chronic or long term pain, is

pain that last longer than three months.

Persistent pain

Sometimes pain sticks around longer than it needs to. The usual

medical treatment doesn’t always work as easily for this persistent

pain, making it very confusing and difficult to understand.

Like after breaking an arm, this persistent pain doesn’t mean the

painful area is being damaged. In fact in some cases doctors cannot

find any damage in the painful area making it hard to understand why

it hurts. When this happens, it’s like the brain is confused, sending

pain messages when it doesn’t need to!

Pain is a message created by your brain telling

you to protect yourself


The pain gateThe pain gateThe pain gate

As we can see, persistent pain isn’t very simple to understand or

manage. However, we have a simple way of thinking about how pain

works called the Pain Gate.

We can think of our bodies as having a ‘gate’ that controls the flow of

messages between your body and your brain.

Remember, it’s the brain that makes you feel pain, so if the brain’s

messages can’t get through the gate then you won’t feel the pain!

When you are stressed does your pain hurt more?

Is your pain better when your are relaxed and happy?

This is because certain things that we do can either open or close the

gate; changing how many pain signals reach your brain. Below is a

list of things that can open and close the gate.

Opens Gate Closes Gate

Stress

Tension

Anger

Sadness

Worry

Lack of activity

Focusing on pain

Relaxation / calm

Happiness

Stretching / exercise

Distraction

Some painkillers / medication

Massage / heat / cold

TENS machine

There are lots of things that YOU can do to close the

gate on your pain and make it easier to manage!


Tool 1: AcceptanceTool 1: AcceptanceTool 1: Acceptance

Accept that you have persistent pain.. and then move on

Acceptance is the first and sometimes the most difficult step to make.

However it is the most important one in your pain toolkit.

Are any of these thoughts familiar?

Many young people get very sad and angry about their pain, spending

lots of time wishing things were different or how they used to be. This

type of thinking only makes your pain worse because those negative

feelings open your pain gate! Learn what you can about pain and how

you can develop more helpful ways of thinking that will help you

improve the quality of your life.

Acceptance is not about giving up but recognising that you need to

take more control over how you manage your pain and being okay

with how things may have changed. Rather than focusing on what you

used to be able to do or what your pain is stopping you from doing,

focus on what you CAN do!

This acceptance will be a bit like opening a door - a door that will

open to a life where you can take control of your pain!

Why me?

I wish I

was normal

Why cant I

keep up with

others?

What have I done

to deserve this? I should be able to

do this, I used to!


Tool 2: Build your support teamTool 2: Build your support teamTool 2: Build your support team

As we know, having persistent pain isn’t easy and trying to manage it

alone may be unrealistic. It is important that you get involved with

your healthcare professionals and have people around you who can

help you out and support you.

Many young people with pain find their family and friends difficult

because they can either be overprotective or not understanding

enough of their pain. This means it can be a good idea to choose a

couple of people you trust and help them understand. You could even

show them your Pain Toolkit! Use these people to talk to when you

are struggling, want advice or just need to talk.

Name 5 people who could be in your support team

1. ..……………………………...

2. ……………………………….

3. ……………………………….

4. ……………………………….

5. ……………………………….

Ideas

Family member

Friends

Teachers

Doctor

Psychologist

Physiotherapist


Tool 3: Pacing Tool 3: Pacing Tool 3: Pacing

Do you have good days and bad days?

On your good days when your pain is better do you try and make

the most of it by doing lots?

Do you then do nothing and stay in bed on your bad days?

This is the ‘Boom and Bust’ cycle - your boom of activity caused you

to bust!

However, booming and busting isn’t very good for us.

Doing too much can strain your muscles and tires you out.

Resting too much makes your muscles weak and stiff, making it

harder to be active when you want to do.

Over time, we become more tired and weak and we start doing less

and less!

IMPORTANT: Show this pacing information to your teachers and

explain why you may need to pace your activities and need to take

more than usual breaks to avoid your pain increasing.

BOOM

BUST

“I’m starting to feel better, I’d better do loads to catch up.”

“I’ve over done it again, now my pain is bad! I’d better stop and rest and do nothing for a while.”


A different approach...

We can get ourselves out of this cycle by pacing. Pacing means

taking a break before we think we need to. This can be a tricky skill to

learn, but an important one. A tricky one because we want to keep up

with others, but this is not always for us. Perhaps in time, it will be.

We need to think of pacing in anything active you do including

school, seeing friends, shopping, sports or movement.

Try and keep your activity level at the same level every day,

despite the pain.

On a good day try not to over do it - stop BEFORE you start

to feel pain.

On the bad days, make sure you do something. This way the

pain is not controlling your behaviour!

Take regular breaks. This will stop you from overdoing it.

Whatever you are doing, stop and take frequent breaks.

If there is a specific activity you want to do more of, treat it like

training for a marathon. Start slowly and gradually increase how

long you do it for over time.

Speaking of marathons...

If somebody decided to run a marathon, would they be able to do it

without training? Absolutely not! They will need to build up their

fitness. They start off going for short runs and gradually, over time,

increase the length of their runs until they are fit enough to run the full

distance.

As soon as I saw the boom

and bust cycle, I recognised

myself straight away and

could see why I was so stuck.


Tool 4: Plan your daysTool 4: Plan your daysTool 4: Plan your days

To be able to pace yourself it can be really helpful to start planning

your days and what you are going to do. Think about the things that

you want to do. Instead of trying to do it all at once, decide what are

the most important things and focus on them. Forget about the less

important things for now.

Planning out your days is really helpful for dealing with your pain.

Planning when and how long you will do something will help you with

your pacing, making it less likely that you will get carried away and do

too much! You can plan breaks in between your activities and have

dedicated relaxation time.

If there is something big you want to do, break it down into smaller

steps and plan out when and how you are going to do each step.

Take it one step at a time.

And decide what is important!

Example plan:

Monday a.m.

Do some stretching as you have a long day at school

Monday p.m.

Do relaxation before homework. Take a 10 minute break after every

30 minutes of homework.

Tuesday a.m.

Have a bath to relax you for the day.

Tuesday p.m.

Make a plan for the next day’s activities


Tool 5: Setting GoalsTool 5: Setting GoalsTool 5: Setting Goals

Setting yourself clear goals is a great way to achieve the things you

want and will give you something to work towards. Achieving our

goals makes us feel good about ourselves and shows us that change

can happen!

Ask yourself what you would like to achieve. This could be anything

that is important to you. Make sure your goals are SMART:

Specific

You’re more likely to achieve your goals if they are specific. For

example - “I want to be able to exercise” isn’t very clear. “I want

to start swimming” is easier to work towards.

Measurable

It is easier to know when you have achieved a goal if it can be

measured. Distance, a time limit or the number of times you do

it are ways to measure goals; e.g. “I want to swim twice a week”.

Achievable

It’s important to be honest and realistic. Can your goal be

achieved? If not, you will set yourself up to fail.

Rewarding

The more rewarding a goal is, the more likely you will want to do

it! Either make sure the goal is something that will make you

happy, or give yourself treats for your success.

Timed

Set yourself a timescale. If you don’t have a plan then it can be

hard to get started and stay focused. You can always change

your time limits, but make sure you set them.


Tool 6: RelaxationTool 6: RelaxationTool 6: Relaxation

Learning to relax is a great way to help reduce your pain. When

you’re in pain your body tenses up, but being tense actually makes

things more painful! Relaxing can stop you from getting tense and

also closes your pain gate - meaning you feel less pain!

It is important to make regular time to relax, so schedule it into your

day. It may be helpful to plan it in the morning to prepare you for the

day or at night to help you sleep.

Good ways to relax:

Take a bath

Read a book

Listen to music

Watch a film or favourite TV programme

Meet friends

Breathing exercises

Meditation (you can learn this in Yoga)

Or ANY activity that you enjoy and relaxes you!

Body Care:

As your body is where your pain is, it’s important to look after it!

Eat healthy food including lots of fruit and vegetables.

Don’t drink too much caffeine (e.g. cola, energy drinks, tea,

coffee). Caffeine can effect your mood, sleep and pain.

Sleep well! Only sleep at night and avoid day time naps.

Keep Moving. Gentle movement and stretching helps to keep

flexibility

I’m going to take a

bath, then watch a

film.


Balloon Breathing

Breathing exercises can be a great way to relax and

deal with your pain. Put on some slow music and do

this focused, deep breathing for a set length of time

every day, e.g. 15 minutes before bed.

However, try breathing like this for a few minutes if you are feeling

stressed or in a lot of pain. It will help to calm you down and make any

pain easier to cope with.

Get comfortable, sitting in a nice chair or lying on the bed and

close your eyes.

Imagine that you have a balloon in your tummy. Every time you

breathe in, the balloon inflates: Each time you breathe out, the

balloon deflates. Take a deep breath in, and hold it for

3 seconds, then slowly deflate the balloon by breathing out for 5

seconds.

In your mind, when you breathe in, say “one”. Then when you

breathe out say “two”. Keep repeating this and turn all your

attention to the two numbers and the feeling of the balloon

breath expanding and releasing.

I always thought relaxation was just

doing nothing, but since I have

practiced the balloon breathing, my

pain has gone down.


Tool 7: Stretching, Exercise & MovementTool 7: Stretching, Exercise & MovementTool 7: Stretching, Exercise & Movement

A lot of people are scared of exercise as they think it could cause

more problems or increase your pain. However, this is not true.

Regular stretching, exercise and movement actually lowers pain and

discomfort. It prepares the body for movement and strengthens weak

muscles so you will feel better for it. It also makes your body release

special hormones that help to close your pain gate!

Remember to pace! Start slowly and gradually build up your amount

of stretching and exercising. It is not as hard as you think.

If you are in pain, remember that unfit and under used muscles feel

more pain than toned ones. Talk with a physiotherapist or fitness

coach about an individually tailored stretching and exercise

programme that you can work on steadily and safely. This will help

you improve your confidence, muscle and joint strength.

I used to hate exercising as it increased my

pain; I was doing too much at once. Now I start

off slowly and increase a little each time I do it.

I’m starting to feel stronger and not as sore!


Exercise Programmes

Joining an exercise programme can be a fun way to build up your

strength, learn relaxation techniques and meet other people. Lots of

people with pain find the following ones helpful:

Yoga

Tai Chi

Pilates (pronounced Pil-ar-tes)

Please make sure that the teacher is qualified and experienced in

teaching people with persistent pain. Always exercise at a pace that

feels right for you.

I noticed that my dog stretches when she

wakes up so I asked my doctor why this is. He told me that she is preparing her body for

movement. I realised that she was like me,

stiff, so now we stretch together each morning.

Exercise doesn’t have to be anything fancy or intense; just going for a

gentle walk is a brilliant way to get you moving and build your fitness.

Swimming (or just walking up and down in the pool) is also a great,

gentle exercise that is good for joint problems. You can find 15

reasons why exercise is good for you on page 27.


Tool 8: Be PatientTool 8: Be PatientTool 8: Be Patient

It may take you a few weeks or months to see improvements.

This can make it hard to stay motivated, but keep at it and take things

steadily. If you start telling yourself that it isn’t working or you can’t do

it, you probably won’t.

Think positively and believe in yourself - you CAN do it!

When you start to feel good, you may want to catch up with some

activities that you may have let go of. But don’t be tempted to over do

it otherwise it will be harder to stay on track. A good saying is ‘take

things one step at a time’.

Have you become a ‘can’t do’ person?

A ‘can’t do’ person has given up the things they used to do such as

playing a sport, going out with friends, eating out or taking part in

family activities because of their pain. This often makes people lose

confidence and so they avoid doing even more, just in case they can’t.

Is this ringing any bells? Practising the tools in the Pain Toolkit will

help you feel more confident and become a ‘can do’ person again.


Tool 9: Track your progressTool 9: Track your progressTool 9: Track your progress

Keeping a diary or a self-discovery journal of your progress will help

you to see how far you have come and note the successes you have

achieved. This will then help you to build on your success. But it’s

also handy to note what didn't work so you can you learn from those

experiences. We sometimes learn more from our errors and not from

our successes.

Try to write down one piece of evidence each day to show how you

are positively managing your pain. Even on bad days you will have

done something positive - for example, realising what made things

worse is successful pain management! People often find that

recognising their progress improves their confidence.

Sleep

Not getting enough sleep can make us feel tired, unwell and

generally make pain more difficult to manage. You should aim to

get 8 or 9 hours of sleep every night to be at your best. Tips for

getting a good nights sleep include having a bedtime routine

where you go to bed at the same time every night and spend the

hour or so before winding down with relaxing activities such as

having a bath or reading. Avoid watching TV or using computers

and phones just before bed as they keep your brain awake! You

want your body to want to sleep in your bed, so make your room

calming, comfortable and quiet. Also try to avoid drinks with

caffeine such as coffee, tea or cola for at least 4 hours before

bedtime as they will keep you awake. If you can’t get to sleep

after about 20 minutes, don’t just lie there. Get up out of bed

and do something non-stimulating in another room, such as

reading (not TV!) or having a glass of warm milk, and then go back

to bed to try again.


Tool 10: Have a setback planTool 10: Have a setback planTool 10: Have a setback plan

Is it realistic to think you will never have a setback where things go

bad again?

The simple answer is NO!

Be prepared and have a setback plan so you know what to do if

things go wrong. You could ask your healthcare professional if you

need help in making one.

If you have a setback, make a note of what it was that made it worse

and also what helped. This could be useful information when you

experience another. Part of a setback plan could be a "Treasure

Chest" where you put things you enjoy and can turn to on those bad

days. Funny movies, favourite music and good books are good

examples of what to have in this chest.

You can find an example setback plan on page 29

Set back

………

……….

Using the Internet

Type ‘pain’ into a search engine and approximately 1,140,000,000

results will come up! Not everything you read is accurate, and some

sites may be trying to sell you something.

Always discuss with your doctor if you are thinking of trying

something you have seen, or read about.


Tool 11 TeamworkTool 11 TeamworkTool 11 Teamwork

Teamwork between you and your healthcare professional is vital.

Imagine the Vancouver Canucks hockey team playing without a game

plan!

Managing your pain is not a ‘one way street’ and it is not realistic for

your health care professional to totally solve it. You have an important

part to play and need to get involved.

By working together both you and your health care professional can

set an action plan. This action plan can help you both to track your

progress and decide what to do next.

Teamwork is also about working with the people around you

everyday. This includes your family, friends and teachers. It can be

tempting to shut certain people out at times, but accepting peoples

support will make your pain management easier. Try to be honest and

show them your Pain Toolkit to help them understand.


Tool 12: Keeping it up!Tool 12: Keeping it up!Tool 12: Keeping it up!

You may be asking yourself if you have to put these tools into practice

everyday? The simple answer is…

Yes!

Just as a person with diabetes has to take their treatment and

maintain their diet daily, your treatment is:-

Planning

Prioritising

Pacing

Setting weekly or long-term goals/action plans

Relaxation

Exercise

And generally keeping active and being in charge of your pain.

Keeping it up is difficult for many people, but it’s not as hard as you

think once you have set yourself a routine. Just like brushing your

teeth, self-managing your pain will become a habit. Get others

involved and make pain self-management fun!

Putting tools 1-11 into practice


What will I try...

…………………………………………………………………

…………………………………………………………………

…………………………………………………………………

1. ………………………………………………

………………………………………………

………………………………………………

2. ………………………………………………

………………………………………………

………………………………………………

3. ………………………………………………

………………………………………………

………………………………………………

What 3 things have I learnt about

managing my pain?


Family Support Family Support Family Support

Pain not only affects the person experiencing pain. Any difficulty that

you experience is also going to be felt by the people who care about

you.

We have already talked about how important it is for your family to

understand your pain to be able to help you. Education is so

important as a better understanding can help them to feel better about

what is happening and accept the changes that need to be made.

Your family may also be struggling to cope themselves. It is

important for everyone to recognise that it is understandable for the

family to find things difficult and to feel a whole range of emotions.

They may need their own support and advice for how to look after

themselves and to help you in your pain self-management.

Encourage your family to get involved and access the support that

they need. They may also want to get involved in the pain

services, as family members can speak on the behalf of those in pain

and are important voices of change!


Giving back Giving back Giving back

The tools that you may have learned about in this Pain Toolkit will

hopefully help you to live life to the full despite your pain.

Once you feel that you have taken control of your pain there is no

better feeling than sharing your knowledge with others to help them to

improve their life.

Getting advice from someone who truly understands what having pain

feels like can be incredibly helpful and inspiring. Imagine giving

another young person with pain a real sense of hope that change is

possible!

Ways to give back:

You could get involved with your local pain services to become

an advocate for change and help educate others.

Work with an existing support group.

“Helping others really helped me as it made me

feel useful”

“Hey doc, how can me and my buddies help you

with the


Stretching, ExerciseStretching, ExerciseStretching, Exercise

& Movement & Movement & Movement

15 reasons why it is good for you Helps to improve and maintain good overall health

Increases strong cardiovascular system – heart, lungs and blood vessels

Increases muscle strength

Improves flexibility

Increases endurance and stamina

Increases natural pain killers (called endorphins) in the bodies nervous system which help control pain

Helps with weight control

Helps to improve quality of sleep

Helps balance and co-ordination

Reduces fatigue and increases energy

Reduces muscular tension, stress and depression

Helps combat depression and anxiety

Helps maintain a positive outlook

Helps to prevent constipation

Can be sociable

Drinking Water

Water is essential for a healthy life so drinking plenty of water is

important for everyone. It’s even more important if you are taking part

in physical exercise, so make sure you keep properly hydrated before,

during and after exercising.


Examples of Pacing Examples of Pacing Examples of Pacing

These are just examples. There may be many other everyday

activities that you need to think through before you tackle them. If you

stop and think about what you intend to do BEFORE you do it, there

is less of a chance that you will have a set back.

Remember pacing is ‘taking a break before you need it’ and

spreading out your activities.

Sophie & Swimming

Sophie used to love swimming. However, since her pain she stopped

doing it. After learning the tools she wanted to start again but knew

she needed to pace herself. She started by going to the swimming

baths on a Saturday and just walking gently in the pool, stopping

often. On the third Saturday she took the next step to swimming 5

lengths, but stopping for 5 minutes in-between each one. She did this

for another three weeks and then increased it to having a break every

2 lengths. Sophie continued to slowly increase the number of lengths

she did and eventually started going twice a week. She found that by

pacing herself she built up her strength and could do more and more

without getting any pain.

Daniel and Music

Daniel had a big homework project due in. He was worried because he

knew that sitting at the desk for too long makes his pain worse. He

decided to make a plan. He planned to spend 1 hour on the project

each night but to take 5 minute breaks every 30 minutes. However, on

the first night he noticed that after the first 30 minutes he was getting

pain. He realised that he needed to stop before this so changed his

plan to having a 10 minute break every 20 minutes. He did this for 4

nights and got his project done in time without getting too much pain.


Your Setback PlanYour Setback PlanYour Setback Plan

.

Setbacks are usually caused by doing too much, for example

overdoing it, giving into pressure from friends or just forgetting about

your pain. It is common to occasionally have setbacks.

Remember, you can always ask your doctor or health professional for

help with your setback plan if you are unsure.

First of all, do not panic! Your plan will help you through. Accept that

you are having a setback and just as it came, it will go.

Pace yourself and prioritise!

Pace yourself by breaking up tasks into smaller portions and

resting in between. Reduce your activities until it settles.

Be kind to yourself. Say ‘NO’ to any unnecessary demands put

upon you until you are feeling healthier. And don’t be too proud or

scared to ask for help!

Taking your medication

Get advice from your GP about your medication.

If you have to take it regularly think of ways to remind you. Set a

reminder alarm on your phone, use ‘post-it’ notes, or get

someone to remind you.

Remember that taking medication may mask the pain and

encourage you to do more. Make sure you take things slowly

even if the medication has reduced your pain.

It is not realistic to think that you will never have a set-back.

Having a plan will help you be prepared and recover quicker.


For ‘musculoskeletal’ pain (back, leg, arm, neck etc.)

Apply heat and/or ice in a way that makes you most comfortable.

You could apply ice packs wrapped in damp towels for 5 minutes

every hour for the first one or two days.

Always make sure you have a cloth between your skin and the

ice to prevent ice burn to the skin. You should avoid lying on an

ice pack.

People with rheumatic problems may prefer to use heat rather

than ice. If you are not sure, ask a GP.

Take it easy.

Briefly cut back on normal activities. Lie down for a short while

and relax (but avoid resting all day - try to do small things).

Bed rest weakens muscle strength rapidly; you lose about 1% of

total muscle strength a day if you become inactive.

After resting make sure you get up and do some gentle activity.

Keeping active will actually speed your recovery.

Try to start moving gently

Remember to pace yourself. Begin with gentle stretching and

movement as soon as possible.

Keeping active may seem like the last thing you should do, but

with persistent pain it is really important. Don’t be put off - it does

work!

Relaxation

Using relaxation is another good way of managing a setback.

Have regular relaxation time and use your balloon breathing.


Your stories...Your stories...Your stories...

Ryan Gulak, a young person from the BC Children's

Hospital Complex Pain Service

“Some of the most important things you need to

take control of your pain are knowledge,

support, and the tenacity to succeed. Without

the knowledge of pacing, and how to develop

an effective exercise regime I would never have

been able to reduce my pain to manageable

levels. The guidance and support provided to

me by the complex pain team at children’s

hospital was an invaluable asset to me. You

have to tackle pain on both the mental and

physical fronts, to strengthen and condition the body as well as

facing the negative mental effects that accompany chronic pain, and

learning how to deal with them. Lastly having the self-motivation

required to put your plan in motion and to see it through is

absolutely vital. Ultimately no one can do this for you, forcing you to

become your own advocate. Learn to tune in to what your body is

telling you, and use that to pace yourself effectively. Be proactive

and try designing your own exercise programs, and use the support

that you have as a sounding board for your ideas. Take charge of

your own recovery, and you’ll take control of your pain. And when a

setback occurs, sudden stresses worsen your pain or anything that

begins to slow down your recovery, use your personal support team

to get you through it. Whether it’s our youth support group, a close

friend or family member, don’t be afraid to lean on those who care

when things get tough.”


Ella, a young person living with chronic pain in BC

“For the past 3 1/2 years I have been on a

journey that has not been an easy or enjoyable.

Along the way I have learned many lessons that

have helped me with my chronic pain and all

aspects of my life. Despite past struggles with

trusting the medical system and the doctors who

don't always believe teens or understand pain

issues, I have been learning to accept help and

to talk about the anger that was hindering my

recovery. Having trusted support groups with professionals, family,

friends and pets is helpful in providing emotional, mental and

physical help. While it is only me that can feel the pain, with the help

from others I am not doing this alone. Having a doctor take charge

and organize other professionals really turned things around for me.

They all started working together as a team, keeping each other

informed on my progress and meeting me regularly. As you get

better it is normal to have setbacks so planning for this is very

helpful, but the recovery process is not easy. It can be like 3 steps

forward and 1 step back. I had to learn that lying in bed all day when

I had a bad day was not helping, it actually made me worse

because I got weaker. I had to start understanding that moving was

what I needed to do to get better. Pacing myself when I am having a

good day helps to stop me from suffering and when I am having a

bad day, although I find it really hard I try and do something to keep

active. However, keeping your mental state healthy is just as

important as your body. Even when you have a bad day, the pain is

a lot easier to deal with if you are emotionally okay. Keeping my life

as close to normal as I can always helps me manage better. I am

proud to say that I have learned to balance between overdoing it

and under doing it.


Useful Website links Useful Website links Useful Website links

Pain Toolkit Download copies of the Pain Toolkit

www.paintoolkit.org

BC Children’s Hospital Pain Service www.bcchildrens.ca/

Services/PainService

People in Pain Network

www.pipain.com

Pain BC

www.painbc.ca

Canadian Pain Coalition

www.canadianpaincoalition.ca

Pain Resource Center

http://prc.canadianpaincoalition.ca/en/

PIPN Youth Support Group

www.pipain.com/support-group-listing.html

Living Well with Pain

www.lifeisnow.ca/pip

BBoy Science Physical Therapist explains exercise and pain

www.bboyscience.com

Resources, Support and Information for youth in BC

www.mcf.gov.bc.ca/for_youth.htm

http://www.bcchildrens.ca/Services/PainService




Youth Health Talk: Watch, listen and read about real young peo-

ple’s experiences of health problems.

www.youthhealthtalk.org

Quiet Mind Café: Website of free relaxation videos

www.quietmindcafe.com

Mindfulness, Meditation and Yoga

www.mindful-living.ca

National Sleep Foundation

www.sleepfoundation.org

BC help with depression

http://tinyurl.com/c4psawg

YouTube ClipsYouTube ClipsYouTube Clips

Guided relaxation

http://tinyurl.com/6gzf4kp

http://tinyurl.com/clkc2gb

Progressive relaxation for pain

http://tinyurl.com/cgfwks3

Understanding pain (What to do about it in less than 5 minutes)

http://tinyurl.com/5ts4xva

The mystery of chronic pain

http://tinyurl.com/4xblknn

Why things hurt (This may sound technical at first but bear with

it, as its really cool)

http://tinyurl.com/7g79by3


Complex Pain Service (CPS) Complex Pain Service (CPS) Complex Pain Service (CPS)

What is the CPS?

The CPS is an outpatient service working to help children and young

people prevent and manage complex pain.

The CPS has a number of different people working together to give

young people the best care possible. This includes a pediatrician, an

anesthesiologist, a pain nurse, a psychologist and a physiotherapist.

We also work with other health professionals including a psychiatrist

and a pharmacist to help us out when we need them.

Some of the common types of pain we treat are headaches,

abdominal and musculoskeletal pain.

How does the CPS help?

We aim to help improve children’s functioning and wellbeing by

lowering the impact of pain on all aspects of their lives. This is

achieved by:

Promoting and supporting a self-management approach

Jointly coming up with a treatment plan with the child and family

that includes one or any combination of the following...


Medication

Physical therapy

Cognitive behavioural therapy

Complementary therapy (complementary therapies are

complementary to your own-going treatment or pain

management programme. Discuss first with doctor or parents)

Local anesthetic intervention

Focusing treatment on physical reconditioning and coping

techniques as well as family and educational support

Providing treatment on an outpatient basis

Referring the child and family back to the community for care

once a good treatment plan has been established

More information on the CPS Clinic is available in our Complex Pain

Service pamphlet (PDF).

www.bcchildrens.ca/Services/PainService


How to access My Pain Toolkit How to access My Pain Toolkit How to access My Pain Toolkit

These tools have helped many people living with pain and their

families in the United Kingdom, Europe, Australia, New Zealand and

now for the first time in Canada.

My Pain Toolkit is available through the BC Children's Hospital Pain

Service and People in Pain Network website:

www.pipain.com

A special thank you to Pete Moore and Jessica Bird who have worked

long and hard to make the My Pain Toolkit available in Canada.

An additional thank you to Heather Divine, a person living with

chronic pain and CEO of People in Pain Network, and Dr Gillian

Lauder from the BC Children's Hospital Complex Pain Service.

Heather and Gillian have worked with Pete and Jessica to bring My

Pain Toolkit to you.

Heather Divine Gillian Lauder

http://www.pipain.com


More about the authorsMore about the authorsMore about the authors Pete Moore & Jessica Bird

Pete lives in Essex, England and is a keen promoter

of pain self-management and other health conditions.

Pete has written several pain management

programmes and books. He is often asked to provide

educational seminars for health care professionals and

patient groups in the UK and Europe.

Pete is a member of the:

British Pain Society

International Association Study of Pain (IASP)

“Self-managing pain or a health problem is not as hard as you think

and the best way to approach it is by taking small steps. Be patient

with yourself. We, as that saying goes ‘want to walk before we can

run’. Easy does it. You will get there.

Always ask for help and support from your doctors, family, teachers

and friends. In time you will become more confident and in control”.

Jessica is currently undertaking her doctoral training in

Clinical Psychology at Oxford (UK) and has

experience working in pain management and with

children and young people. She has an Honours

degree in Psychology and is a member of the British

Psychological Society.

”Change can be really scary. However, the fact that

you are even thinking about changing is a really

positive thing. Believe in yourself and take each step when you are

ready.”

Pete Moore

Jessica Bird

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Guidance for Management of Joint Hypermobility Syndrome in Children and Young People.

A Guide for professionals managing young people with this condition This guidance document has been compiled by the Allied Health Professionals Group of the British Society for Paediatric and Adolescent Rheumatology (BSPAR, 2012). In order to cover the complexities of this condition some aspects of management have been divided into different professions, however there will be significant overlap as to who provides the intervention depending upon local teams. Introduction This guidance document is designed to help and support therapists working with children and young people with Joint Hypermobility and musculoskeletal pain. Objectives

1. To facilitate the development of specialised, expert consensus opinioned and holistic management programmes for children and young people with Joint Hypermobility Syndrome (JHS), using a bio psychosocial model which acknowledges the global impact of the condition.

2. To optimise the standard of care of children and young people with JHS by empowering them, their carers and other health professionals through the provision of treatment, education, information and support.

3. To enable children, young people and their parents to be active participants in their self- management.

4. To ensure efficient, cost effective and evidence-based therapy management for children and young people with JHS.

These guidelines will be reviewed in 2017 by the BSPAR AHP group.

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Contents:

Assessment

a. Introduction

b. Subjective Assessment

I. Presenting Problems and Common Symptoms

II. Pain and Fatigue

III. Additional but rare symptomatology

i. Autonomic dysfunction

1. Gastrointestinal and urinary tract symptoms

2. Cardiovascular autonomic dysfunction

a. Orthostatic hypotension

b. Orthostatic intolerance

c. Postural orthostatic tachycardia syndrome (POTS)

ii. Other cardiac features

c. Objective Assessment

Management

I. Self-management

II. Pain Management

III. Physiotherapy

IV. Occupational therapy

V. Podiatry

VI. Clinical Psychology

VII. Pacing

VIII. School/Education

IX. Activity and Sport

X. Sleep management

XI. Weight management

XII. Mood and Motivation

XIII. Equipment

Concerning symptoms and behaviours

References

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Therapy Management Guidelines

Assessment

a. Introduction

Hypermobile joints are common in the general population and many individuals with hypermobility do not experience any significant difficulties. In fact in many situations (i.e. sportspeople, dancers etc.) hypermobility can have positive advantages. However some people experience difficulties and symptoms which are understood to be related to being hypermobile; commonly known as Joint Hypermobility syndrome (JHS) or Ehlers-Danlos syndrome Type III (Hypermobile EDS). It is sometimes unhelpful for a young person to have the label of EDS III because the significant risks associated with the other forms of EDS can mistakenly be assumed to also apply to this group. For this reason, the preferred term to use is Joint Hypermobility Syndrome (JHS). Assessing and managing this condition in children and young people requires specialist knowledge since for all the extra-articular symptoms including abdominal involvement, headaches, fatigue etc. there is a normal variance in the population. Care must be taken to ensure that appropriate importance is placed upon each symptom and the condition is not over-medicalised. In general hypermobility should be regarded as a “connective tissue advantage” providing the child is strong and fit, difficulties occur mainly when the body has become weak and deconditioned.

Signs and Symptoms

There can be considerable variability in the severity of JHS, even within the same family. The main features are: joint hypermobility associated with muscle and joint pains and some level of fatigue. Easy bruising and clicking of joints are common symptoms which should not cause concern. Much less commonly young people may have problems with abdominal pain with or without some levels of bladder and bowel dysfunction and even rarer, postural orthostatic tachycardia syndrome (POTS), hernia, uterine or rectal prolapse and joint dislocation (though subluxation is slightly more common). There may also be an overlap with Developmental Co-ordination Disorder (DCD) and it may be difficult to differentiate between the symptomatic aspects of both without considering the criteria/definitions within the latest DSM assessment; however JHS is not life threatening and much benefit can be achieved from proactive and positive self-management with the goal being full participation in all activities.

Aims

JHS is often under recognised, not well understood and poorly managed. These guidelines are to provide further information for health professionals involved in the management of children and young people diagnosed with JHS. Patients have often been seen by a number of health professionals before a diagnosis is reached and families frequently report feeling that they haven’t been listened to. Therefore, an important part of management is to listen to the family’s concerns and deal with the expectations of both patients and parents.

The aims of treatment for JHS are to improve current symptoms, as well as avoiding future complications. Widespread and longstanding pain can result in a downward spiral of general physical deconditioning, pain and fatigue. A multi-systemic approach is needed to deal with the variable symptoms that can present. Each person with JHS is affected differently and so has varying management needs. It is important to work together with patients and families to develop an appropriate individual management plan. It is also helpful to establish realistic expectations along the way.

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Management of JHS requires professionals, young people and their families to work together towards clearly defined and shared goals. The overall aim of any intervention is for the patient to gain a full understanding of hypermobility and the skills and knowledge to manage the condition themselves. The longer-term outlook for young people with JHS is very positive and with the correct management all young people should be able to participate in all activities they want to without on-going professional support. Most treatment centres would usually provide advice/orthotics/self-management programmes and would have limited resources for unlimited on-going treatment. These guidelines outline the main issues that may need to be considered when developing an individualised management plan.

b. Subjective Assessment:

The subjective assessment of a child or young person with JHS should include a clear and comprehensive history covering the following areas:

Presenting Problems

Past Medical History

Drug History

Social and Family History

Mental health and well being

Ethnic and cultural concerns

Benefits

Participation in Activities of Daily Living (ADL) including self-care, leisure and sleep

Impact on learning and participation in school activities

Career planning / development

What information has been given?

Level of understanding of problems

Occupational / Physiotherapy / Other Professionals

I. Presenting problems and Common Symptoms:

Joint and/or muscle aches and pains o Often occurring after activity or during the night more often lower limb than upper.

Muscle and joint stiffness o Usually after exercise or increased activity, may occur for a few days after increased

activity.

Fatigue o Often associated with reduced walking distance and reduced exercise tolerance and

/or difficulties attending fulltime education due to tiredness. o This symptom is commonly linked to level of deconditioning of the child. o Poor sleep will also impact upon fatigue levels.

Fidgetiness, difficulty sitting still and poor organisation of movement etc

Headaches

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o This is often related to muscle spasm of the Trapezius muscles.

Poor sleep

Easy bruising o This is benign and not of concern.

Clicking joints o Joints can click spontaneously or be clicked deliberately, both are fine and can be

performed safely many times a day. This only becomes a concern if it becomes habitual and obsessive impacting on QOL.

Reduced co-ordination and balance o Poor proprioception leading to clumsiness and reduced balance. o Poor core stability leading to difficulties such as hand writing challenges and other

issues with fine motor control. o Reduced fine motor control – especially involving small grip function.

o If these symptoms do not improve with improvement of strength and gross motor skills and have significant impact upon ADL’s and are significantly below what is expected for chronological age and intelligence level an assessment for a Developmental Co-ordination Disorder (DCD) may be advisable.

Response to local anaesthetic o There is very little evidence to support this concern, however it has been reported

that some people with JHS may have a reduced effect of a local anaesthetic.

Abdominal pain o This is common in childhood generally and the incidence may be slightly higher in

children who are hypermobile. o Constipation is a common cause of abdominal pain.

It is also important to remember that many of these symptoms have normal variants in the general population and care must be taken to ensure that there is a balance between medical investigation and effective symptom management.

II. Pain and Fatigue

We usually understand pain to be a warning about damage to the body. When this is the case a reasonable response to the pain would be to withdraw or avoid activity.

However in JHS pain is an indication that the body is not strong enough to do the task and that it requires strengthening. This means that the young person will need to keep engaging in everyday activities and exercise, not do less.

Similarly fatigue is not necessarily an indication that more rest is required. Rather, it may signal that the body requires more fitness training, pacing of activities and better sleep hygiene.

It is also important to recognise that normal sleep patterns change throughout childhood into adolescence and then into adulthood. It is important to consider this when assessing fatigue levels and abnormal sleeping patterns.

Gradually pacing up activity levels and exercise is the most effective cure for fatigue during the day and often when there is a slump in energy levels a small snack and a brisk walk or other type of exercise will often rejuvenate the body in order to continue with the day’s activities.

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III. Additional but rare Symptomatology:

i. Autonomic dysfunction

Some children with JHS have been found to have an increased frequency of problems relating to the autonomic nervous system. Symptoms of autonomic dysfunction can occur at any age.

1. Gastrointestinal and urinary tract symptoms

Children and young people with JHS may have unspecific gastrointestinal symptoms, such as nausea, stomach ache, diarrhoea and constipation. Faecal and urinary incontinence can also be a feature of the condition. However these symptoms are also very common in children generally and may not be related to their hypermobility.

In very rare cases a disease called ‘eosinophilic collitis’ may be present. This is a condition that can cause constipation and difficulty maintaining a healthy weight and is often linked to food intolerances; however this condition can be well controlled with the guidance of a specialist gastroenterologist.

Routine treatment of paediatric constipation is extremely effective with these symptoms.

Advice about toilet habits can also be useful; such as having a stool to rest their feet on in front of the toilet to help optimise the position of the pelvis and enable effective bowel opening.

If appropriate, arrange assessment of medical management of bowel symptoms through a paediatric gastroenterologist.

Refer children or adolescents with significant urological problems for specialist assessment.

2. Cardiovascular autonomic dysfunction

Patients with JHS may describe symptoms of cardiovascular autonomic dysfunction, which affects heart rate, blood pressure and blood flow. Again, these symptoms are very common throughout the general population especially during adolescence. a. Orthostatic hypotension A fall in blood pressure upon standing causes symptoms such as; venous pooling, dizziness, light headedness and syncope. b. Orthostatic intolerance Symptoms appear after periods of standing and can include; fatigue, light headedness, hyperventilation, sweating, paleness, anxiety, and acrocyanosis. c. Postural orthostatic tachycardia syndrome (POTS) POTS is characterised by a rapid rise in heart rate on standing (30 beats per minute above lying down heart rate). A common age of onset for POTS symptoms is during adolescence. Symptoms of POTS can include:

Light-headedness and dizziness particularly on standing

Fainting

Heart palpitations or a racing heart beat

Non -specific fatigue

Diagnosis of POTS is not easy and though it is often done by performing a tilt table test (or standing and lying heart rate if tilt table unavailable) this not validated in children and adolescents so the results of the tilt table test have to be interpreted carefully.

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Treatment for POTS is available and usually involves simple measures such as increased fluid and salt intake. Exercise has been shown to be the most effective management for this aspect of JHS and medication should be used very carefully.

Those with severe symptoms of cardiac autonomic dysfunction should be referred to a specialist clinic, such as a POTS clinic, or a Cardiologist with a specialist interest in syncope and arrhythmias.

ii. Other cardiac features

Increased aortic root size and mitral valve prolapse had been reported to be more common in patients with JHS, but current evidence suggests they are usually of little clinical consequence and is extremely rare. It is important to be careful not to alarm the child and their family and so referral for assessment of this should be carefully considered as increased anxiety about this condition is not helpful for the child.

An echocardiogram may be recommended as a baseline assessment in extreme situations.

Objective Assessment:

I. General wellbeing a. Patient VAS. A visual analogue scale for the perceived level of general wellbeing at the

present time completed by the child if old enough. b. Parent VAS.

II. Baseline measurements: a. Height /weight /centiles / blood pressure b. Pain (VAS may be used) c. Fatigue (VAS may be used)

III. Joint range of movement a. Knowledge of where hypermobility is present is usually most effective in designing a

management programme. b. Beighton Scale may be useful.

IV. Muscle length a. Awareness of muscles that move over 2 joints may become tight despite generalised

Hypermobility.

V. Muscle strength a. A basic assessment of muscle strength is vital. Often scoring using the Kendal Scale (0-

10) provided a score that easily monitors change over time. b. Specific muscles should always be assessed including:

i. Inner Range Quads (Straight Leg Raise without a quadriceps lag)

ii. Hip abductors – specifically Gluteus Medius

iii. Hip Extensors – specifically Gluteus Maximus

iv. Plantar Flexors

v. Core central Stability

VI. Posture and Gait a. Both should be assessed especially with the view to prescribe orthotics.

VII. Stamina a. 6 min walk test may be useful. b. Subjective reporting of distance and time walked is also effective.

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VIII. Function a. The CHAQ may often demonstrate how significantly independent function is affected

by this condition. (CHAQ is not formally validated for JHS). b. An objective assessment of occupational performance including self-care, leisure and

activities at school such as handwriting, dextrous manipulation, activity organisation, dressing etc.

Management of JHS

The Multi-Disciplinary Team:

As some young people with JHS can present with a wide variety of difficulties, they may need to be seen by a number of different professionals who must ensure that they communicate with each other in order to provide a cohesive management programme. A thorough MDT assessment will help determine the most appropriate individualised treatment plan.

I. Self management

It is helpful for families to understand JHS and that this is a non life threatening condition and in many instances hypermobility can be advantageous.

The aim for young people and their families is for them to develop the skills and knowledge in order to manage the symptoms and participate in all activities.

For the best chance of success parents and adolescents should be fully involved in the treatment plan and age appropriate language must be used with children.

People with JHS do benefit from maintaining a healthy everyday life. A well balanced diet, regular gentle exercise, full participation in school and activities as well as quality sleep all play their part.

Children and adolescents may benefit from advice on best technique for carrying out tasks of daily living, to avoid placing unnecessary strain on their joints and minimising pain. Often encouragement is needed to include appropriate exercise into their daily routines. It is well recognised that significant periods of inactivity greatly exacerbate symptoms of JHS.

A good understanding of pacing activities needs to be developed by children and adolescents with JHS in order to avoiding the ‘boom and bust’ cycle (over exertion leading to pain and fatigue). As children and adolescents grow up, gaining an understanding themselves about JHS will help them develop the motivation needed to manage their condition and develop a healthy lifestyle incorporating regular exercise.

II. Pain Management / Education

Recognition and management of chronic pain is an important part of management for children with JHS. Pain can affect concentration, memory, mood and sleeping. If appropriate a referral to a unit that is confident with the management of chronic pain in children may be helpful as chronic pain is most effectively managed with a combination of physical and psychological techniques.

Pain medications are often ineffective and the side effects should be carefully considered. Pain management interventions can be provided by physiotherapists, occupational therapists and psychologists depending upon the local service provision.

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The aim of pain management is to increase quality of life. Therefore patient-led goals will be an important part of boosting motivation to engage in the self-management programme. Fear of the unknown can be a big source of anxiety for both the young person and their family, so education and addressing the personal beliefs can be helpful in reducing such fears. Cognitive restructuring can help to recognise unhelpful behaviours, such as excessive rest, and establish new patterns of reasoning. It is important to identify any catastrophising and avoidance behaviours and to recognise their role in the fear cycle.

For children and young people with JHS it is helpful to consider their relationships with others. Parents can be hugely disempowered if their child is experiencing pain. It is therefore important to help parents to develop strategies that they can use to ensure they promote positive rather than unhelpful patterns of behaviour for their child.

It is helpful to establish realistic expectations. There will be times of increased pain, for example after a lot of sport or injury and a management plan for dealing with these times should be discussed. It is really important to ensure that at these times rest is not promoted for long periods of time.

In general, medical approaches to pain management are not thought to be particularly beneficial for JHS, with patients reporting that analgesics have limited effect and there is the disadvantage of side effects that come with certain medicines.

COMFORT TOOL BOX: it is useful for the child and family to develop their own collection of activities and interventions that can be used to reduce the pain. These can be items that facilitate distraction as well as positive coping statements, relaxation scripts, aromatherapy oils, exercises, physical activities comforting objects and pictures etc. This may be a real box full of these things or a virtual box that have been created between the young person and their family.

III. Physiotherapy

A lifelong commitment to exercise is needed for all patients with JHS. Physiotherapy can help to promote this from a young age using specific exercises and encouraging activities that can be incorporated into daily life and, most importantly, be enjoyed!

The plan:

Restore and maintain full muscle strength and function throughout the full range of movement.

Restore effective and efficient movement patterns.

Improve general fitness.

Restore normal range of movement, including into hypermobile range.

Provide education, reassurance, advice, pain management and develop problem solving.

The goal:

Self-management.

Patients with JHS often experience pain. Left unresolved, this may lead to fear of movement and decreased activity, resulting in muscle deconditioning. Core and specific muscular strength is vital for patients with JHS to help minimise pain, maintain good posture and reduce joint instability. Activities to maintain strength and stamina are vital for managing this condition.

However, patients with JHS tend to have a poor tolerance of static, repetitive or excessive activity, often resulting in pain and fatigue the following day. This is due to having specific muscle imbalances resulting in “delayed onset muscle pain” (DOMS) and joint discomfort. This can cause worries about

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aggravating symptoms and result in a reluctance to exercise. However DOMS is a completely normal response to an increased level of exercise and is not an indication of damage.

Patients with JHS may have reduced proprioception, making it harder for them to carry out exercises correctly on their own. Incorrect positioning may result in exercises being ineffectual or damaging. Children with JHS are often hypersensitive and become more aware of the pain sensations and so this should be taken into consideration when using massage or manual treatment techniques.

The physiotherapy will be most effective if targeted to the specific areas of difficulty the young person is experiencing. This may be a specific muscle weakness or a specific function that is difficult. Often a specific exercise programme will ensure that the muscles can protect the hypermobile joints enabling full inclusion in all activities. In order to engage children and young people, physical therapy should aim to be specific, effective, time efficient and if possible FUN! Consider the patient’s goals and what will be achievable.

Normal activities

Encourage normal activities and a return to sport, providing individual advice on specific elements of activities as appropriate.

Specific exercise programme

The most effective exercise programme for the management of hypermobility will be a progressive resisted exercise programme that targets the specific muscles that are weak and that are required to control the joints into their hypermobile range. If the muscles are completely effective then posture and function will improve. The use of open chained exercises, non-weight-bearing which build on the principal of high repetitions and low weights has been shown to be very effective. These exercises can be started at a very early age.

Advise on postural alignment

Good postural alignment protects supporting structures against injury, enables muscles to function most efficiently and provides optimum positions for thoracic and abdominal organs.

Core Strengthening

Exercises to build core strength, muscular strength and endurance improve stability, balance and coordination. Incorporate functional and everyday activities. Try balance boards, wobble cushions and gymnastic balls as well as specific exercises.

Stretching

Stretching can be used to maintain muscle length, joint range and to stretch out old injuries or muscle spasms. Stretching should not be to increase an already hypermobile range.

Joint Subluxations

Repeated self-subluxation of joints should be avoided, however resting in “unusual” postures i.e. “W” sitting is fine as this is in their normal range of movement.

Goal setting

‘Realistic’ goal setting (both short and long term) can help patients in making progress.

Proprioception training

Exercises to enhance proprioception can include the use of mirrors, bio feedback and balance boards may also be effective as well as the strengthening exercises. Programmes to enhance proprioception have been proven to show good results.

Sport specific assessment

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Assessment of swimming and other sports techniques may be helpful to enable to young person to participate fully.

IV. Occupational Therapy

Occupational therapists can assess a child’s performance in a range of daily activities. This may be done in a clinic setting, in the home or school environment. Assessment will be holistic and will consider the child’s skills, their motivation and their daily routine, as well as their environment. Comprehensive assessment will allow the OT to identify barriers to occupational performance and the design the most appropriate intervention. This may include building skills; suggesting strategies, educating the young person and others in order to enable independence in daily activities.

Those with JHS have greater difficulty building up muscle strength and endurance and most will be familiar with the ‘boom and bust’ cycle associated with overuse. Pain will often after activity which may lead to children avoiding particular activities which may have a marked impact on their self-confidence and self esteem

Pacing

Pacing which refers to a systematic graded approach to participation in activity, along with energy conservation is vital so that young people learn to use their energy for the activities they need and want to do. An activity diary will shed light on the current level and pattern of activity. From this, an activity baseline which is easily manageable with minimal effort can be set. Over time the level of activity should be increased until they have enough stamina and coping strategies to manage all activities.

Daily occupations

Assessment of participation in daily activities will be important. Interventions are likely to include both physical and psycho social strategies. The chief focus should be on building skills and resilience. Rarely would assistive devices (such as splints) as a compensatory approach prove beneficial in the longer term. Simple adaptations such as pen grips may be very effective and there are a large variety of different styles and shapes of pen and pencil which can be found that will enable writing to be more efficient.

Home, school and leisure should all be considered and close liaison with the school would be important to ensure the most appropriate support is provided in a school environment.

Sleep and relaxation

For those experiencing difficulties with sleep, sleep hygiene advice may be useful. A careful assessment of sleep patterns will be helpful in targeting other interventions such as distraction, stress management and relaxation techniques.

Pain management

The OT profession is founded on the principal that there is a direct link between activity, health and well-being, they are therefore well placed to also help the young person explore the inter relation between physical symptoms, feelings/emotions and activity and offer appropriate advice or intervention.

Self confidence

In some instances pain and difficulty engaging in a full range of every -day activities may have impacted on a child/young person’s self-esteem and motivation level. OT’s will promote meaningful activities aimed at increasing this to ensure satisfactory participation in daily life.

Splinting

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Splinting is generally avoided due to the risk of deconditioning, but occasionally for the hypermobile MCP of the writing hand a splint is useful to prevent the hyperextension therefore aiding writing, reducing pain and fatigue.

V. Podiatry

Podiatrists provide advice on suitable foot wear. Slip-on shoes should be avoided and supportive boots/ shoes that are purchased from appropriate shoe shops may be considered for children with weak ankles. Often boots with laces or high-top trainers are appropriate and comfortable footwear.

Orthotics may be prescribed for those with flat feet where the positioning and function of the feet may contribute to symptoms.

VI. Clinical Psychology

Clinical psychology may be required to ensure that JHS does not prevent the young person fully participating in life.

Psychology input may focus upon pain management skills and techniques or on thoughts, feelings and behaviours in response to symptoms. Cognitive behaviour therapy (CBT) may be useful in modifying unhelpful beliefs and behaviours, though many other approaches may also be utilised.

If the young person is experiencing low mood and/or anxiety these may negatively impact upon their symptoms and their ability to self-manage. A clinical psychologist would be able to work with the young person and their family in order to help modify these feelings so that they are able to regain control of the symptoms and their life.

VII. Pacing

It is important for all young people with JHS to balance periods or activity and rest in order to maximise their ability to achieve physically, emotionally and intellectually. A good understanding of pacing can help avoid the ‘boom and bust’ cycle (over exertion leading to pain and fatigue and consequent under-activity). It is also important to recognise that initially the balance between rest and exercise/activity may have more time spent resting but the goal will be to increase the activity levels and reduce the rest until the balance is tipped back to normal activity levels during the day and the majority of rest gained at night. Once a young person has recovered to this level, pacing can be reduced and in many cases stopped altogether as the young person is able to engage in everyday activities, including full time school, without an increase in symptoms.

VIII. School/Education

Children and young people with JHS need to be able to engage in regular education just like any other child. From time to time they may need extra support to achieve their best in school, and some minor modifications may be appropriate.

Guidance from health professionals working with the individual may help school staff understand the impact the child’s condition. Most pupils do not like to feel ‘different’. It is important for emotional well-being to enable pupils with JHS to be included as much as possible in school activities, but with appropriate modifications.

An OT assessment within school may be beneficial.

Suitable sporting activities should be encouraged, with advice on the suitability of high impact activities and allowances made for reduced stamina.

Appropriate seating may help with posture and comfort in the classroom and movement can help avoid discomfort and pain. It is often helpful to ensure that the child does not stay still

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for extended periods of time. For example asking the child to do small tasks that require getting up and walking about may prevent discomfort without disrupting the class.

Pupils with JHS may need extra time to move between classes and travel around the school. For pupils with increased pain leaving classes early maybe helpful.

After an OT assessment it may be appropriate to recommend that extra time is given during exams and that the use of typing the exam may help as well.

Urinary urgency and bowel problems may be part of JHS so access to toilets should not be restricted.

Storage may be helpful for books and bags so they don’t have to be carried around school all day.

A Hypermobility guide for schools booklet is available from the Hypermobility Syndrome Association (HMSA).

IX. Activity and Sport

Physical activity should be actively encouraged for all young people with JHS. However it is extremely important that the child is fit enough to engage in the sport they wish to do. If this is not the case, young people may need to gradually build up their strength and stamina before engaging in the new activity. Often the physiotherapy programme can be used to ensure that every muscle can do its ‘job’ effectively. There are some sports that will need more preparation for than others such as contact sports.

Care, however needs to be taken when considering trampolining and bouncy castles as these activities put significant stress on the joints and often involve several children at a time which can increase the risk of injury.

With the correct preparation any sport can be considered. However in childhood it is often better to enjoy a variety of sports throughout the week rather than focus on just one.

X. Sleep management

Children and young people with JHS often describe poor and disturbed sleep which may be a result of pain or poor pacing skills resulting in too much rest during the day making it difficult to get to sleep at night. Parents can help to ensure routine and good sleep hygiene. Relaxation techniques may also help promote sleep. Additional professional advice is available if needed.

XI. Weight Management

Maintaining optimum body weight is important. Extra weight can put significant strain on the joints and increase the symptoms of pain and fatigue. Advice may be provided about healthy diets and this may also help in the management of constipation.

It is equally important not to become underweight as this can make maintaining adequate muscle strength difficult. In this instance, it may not be safe to engage in an intensive exercise programme until the young person is at a healthy weight. Weight should be monitored during any intervention.

XII. Mood and Motivation

Understandably, experiencing any of the symptoms described above can have a negative impact on mood, which can reduce the person’s ability to engage in everyday activities and the recommended management programme. Lack of activity and participation, in turn can further exacerbate the symptoms. Low mood and anxiety are commonly experienced by people stuck in such a negative cycle

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and they may start to avoid activities such as a result of a fear of causing more pain and /or fatigue. A thorough MDT assessment will help to identify individuals/families that may benefit from further support in managing emotional distress associated with chronic symptoms.

XIII. Equipment

The general principal is that special equipment is not required. There should never be the provision of a wheelchair for a young person with JHS as this is very damaging to the requirement of maintaining full strength and function. Crutches can be equally unhelpful and should also be avoided in the management of JHS.

The general philosophy applies to the provision of equipment in that the most effective solution to a physical challenge is to find a way to get stronger and fitter so that it can be done with minimum adaptations.

Concerning Symptoms

Unfortunately for some families the philosophy of self-management and maintaining strength and full independent function is very challenging and their fear of the pain and symptoms may be such that they find following the advice of the Professionals very difficult. These families may need more time and interventions in order to help them understand the condition and the real meaning of the pain messages and it may be that for these families the psychological input, in order to help them modify their beliefs, may be the first treatment required. At this time a Multidisciplinary assessment including a level 3 Child Protection trained Paediatric Rheumatologist or Paediatrician and a Psychologist would be appropriate..

Peer Support

Therapists should also ensure that families are aware of organisations, which may be able to offer emotional, financial and practical support. A number of organisations that provide such help are listed below. Resources include handbooks, newsletters, and family holidays.

Hypermobility

Association HMSA

Phone: 0845 345 4465

Email:

Web: http://www.hypermobility.org

The Hypermobility Syndrome Association 49 Orchard Crescent Oreston Plymouth PL9 7N

Key / Audit points:

Self management of the symptoms is vital for the long-term effective management of JHS in children and young people. This may include a specific exercise regime and active participation in non-pharmacological pain management techniques to ensure full participation in all activities.

Pain management and education is an important role of any Allied Health Professional

involved in the care of a child or young person with JHS.

Liaison with school is an important role of the AHP in the care of young people with JHS.

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References

The following texts were used as reference and may be helpful for further reading:

Brad T. Tinkle, MD, PHD (2008). Issues and Management of Joint Hypermobility. A Guide for the Ehlers-Danlos Hypermobility Type and the Hypermobility Syndrome. Left Paw Press 2008

Rosemary Keer & Rodney Grahame (2003). Hypermobility Syndrome: Recognition and Management for Physiotherapists. Butterworth Heinemann 2003.

Acknowledgements: Multi-disciplinary team members of the British Society for Paediatric and Adolescent Rheumatology. Produced by: Sue Maillard, Catherine Carey and Sue Kemp Issue number 1.1, Jan 2013 Ratified by BSPAR Executive Committee: 20.6.13 To be reviewed 2017

Official Document

Physical Therapy Management ofCongenital Muscular Torticollis:An Evidence-Based ClinicalPractice GuidelineFROM THE SECTION ON PEDIATRICS OF THE AMERICANPHYSICAL THERAPY ASSOCIATION

Sandra L. Kaplan, PT, DPT, PhD; Colleen Coulter, PT, DPT, PhD, PCS; Linda Fetters, PT, PhD, FAPTA

Department of Rehabilitation and Movement Sciences (Dr Kaplan), Doctoral Programs in Physical Therapy, Rutgers, TheState University of New Jersey, Newark, New Jersey; Children’s Healthcare of Atlanta (Dr Coulter), Orthotics andProsthetics Department, Atlanta, Georgia; Division of Biokinesiology and Physical Therapy at the Herman Ostrow Schoolof Dentistry, Department of Pediatrics (Dr Fetters), Keck School of Medicine, University of Southern California, LosAngeles, California.

Correspondence: Sandra L. Kaplan, PT, DPT, PhD,Doctoral Programs in Physical Therapy, Rehabilitationand Movement Sciences, Rutgers, The State University ofNew Jersey, 65 Bergen Street, Room 718C, Newark,NJ 07107 ([email protected]).Grant Support: The Section on Pediatrics, AmericanPhysical Therapy Association, provided funds to supportthe development and preparation of this document.The authors declare no conflicts of interest.

The American Physical Therapy Association Sectionon Pediatrics welcomes comments on this guideline.Comments may be sent to the corresponding author orto [email protected]. This guideline may bereproduced for educational and implementationpurposes.

Reviewers: Andrea Perry Block (Parent and publicrepresentative); Carol Burch, PT, DPT, MEd; FernandoBurstein, MD; Elaine K. Diegmann, CNM, ND, FACNM;Joe Godges, PT, DPT; Didem Inanoglu, MD; Lynn Jeffries,PT, DPT, PhD, PCS; Anna Ohman, PT, PhD; ScottParrott, PhD; Melanie Percy, RN, PhD, CPNP, FAAN;Alex Van Speybroeck, MD.

Supplemental digital content is available for this article.Direct URL citations appear in the printed text and areprovided in the HTML and PDF versions of this article onthe journal’s Web site (www.pedpt.com).

DOI: 10.1097/PEP.0b013e3182a778d2

Copyright © 2013 Wolters Kluwer Health | Lippincott Williams & Wilkins and the Section on Pediatrics of the American Physical TherapyAssociation. Unauthorized reproduction of this article is prohibited.

348 Kaplan et al Pediatric Physical Therapy

mailto:[email protected]

A B S T R A C T

Background: Congenital muscular torticollis(CMT) is an idiopathic postural deformity evidentshortly after birth, typically characterized by lateralflexion of the head to one side and cervical rota-tion to the opposite side due to unilateral shorten-ing of the sternocleidomastoid muscle. CMT maybe accompanied by other neurological or muscu-loskeletal conditions. Key Points: Infants withCMT are frequently referred to physical therapists(PTs) to treat their asymmetries. This evidence-basedclinical practice guideline (CPG) provides guidanceon which infants should be monitored, treated,and/or referred, and when and what PTs shouldtreat. Based upon critical appraisal of literature andexpert opinion, 16 action statements for screen-ing, examination, intervention, and follow-up arelinked with explicit levels of evidence. The CPG ad-dresses referral, screening, examination and eval-uation, prognosis, first-choice and supplementalinterventions, consultation, discharge, follow-up,suggestions for implementation and complianceaudits, flow sheets for referral paths and classifi-cation of CMT severity, and research recommenda-tions. (Pediatr Phys Ther 2013;25:348–394) Keywords: congenital muscular torticollis, evidence-based practice, infant, physical therapy, practiceguideline


Pediatric Physical Therapy Congenital Muscular Torticollis Practice Guidelines 349

T A B L E O F C O N T E N T S

INTRODUCTION AND METHODS

Levels of Evidence and Grades of Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . 351

Summary of Action Statements. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 352

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 356

Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 357

CONGENITAL MUSCULAR TORTICOLLIS RECOMMENDATIONS

Congenital Muscular Torticollis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 360

Action Statements 1-6: Identification and Referral . . . . . . . . . . . . . . . . . . . . . . . . . . . . 361

Action Statements 7-11: Physical Therapy Examination... . . . . . . . . . . . . . . . . . . . . . 365

Action Statements 12-14: Physical Therapy Intervention. . . . . . . . . . . . . . . . . . . . . . 378

Action Statement 15-16: Discharge and Follow-up . . . . . . . . . . . . . . . . . . . . . . . . . . . . 385

Guideline Implementation Recommendations.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 387

Summary of Research Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 388

ACKNOWLEDGMENTS, REFERENCES, AND APPENDICES

Acknowledgments.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 388

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 389

Appendix 1: ICF and ICD 10 Codes.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 393

Appendix 2: Operational Definitions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 393

TABLES AND FIGURES

Figure 1: Referral Flow Diagram.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 353

Figure 2: Congenital Muscular Torticollis Classification Grades and DecisionTree. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 354

Table 1: Levels of Evidence.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 351

Table 2: Grades of Recommendations for Action Statements . . . . . . . . . . . . . . . . . . . . 351

Table 3: Measurement Evidence Table. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 367

Table 4: Passive Stretching Evidence Table. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 380



L E V E L S O F E V I D E N C E A N D G R A D E S O F R E C O M M E N D A T I O N S

This clinical practice guideline for physical therapymanagement of infants with congenital muscular torticol-lis (CMT) is intended as a reference document to guidephysical therapy practice and to inform the need for con-tinued research related to physical therapy management ofCMT. The methods of critical appraisal, assigning levelsof evidence to the literature, and summating the evidenceto assign grades to the recommended action statementsfollow accepted international methodologies of evidence-based practice. The document is organized to present thedefinitions of the levels of evidence and grades for actionstatements (Tables 1 and 2), the list of 16 action statements,followed by the descriptions of the aims, methods, and eachaction statement with a standardized profile of informationthat meets the Institute of Medicine’s criteria for transpar-ent clinical practice guidelines. The 16 action statementsare organized under 4 major headings: Identification andReferral of Infants with CMT; Physical Therapy Examina-

TABLE 1: LEVEL OF EVIDENCE

LEVEL CRITERIA

I Evidence obtained from high-quality diagnostic studies, prognostic or prospective studies, cohort studies or randomizedcontrolled trials, meta-analyses or systematic reviews (critical appraisal score >50% of criteria)

II Evidence obtained from lesser-quality diagnostic studies, prognostic or prospective studies, cohort studies or randomizedcontrolled trials, meta-analyses or systematic reviews (eg, weaker diagnostic criteria and reference standards, improperrandomization, no blinding, <80% follow-up) (critical appraisal score <50% of criteria)

III Case-controlled studies or retrospective studies

IV Case studies and case series

V Expert opinion

TABLE 2: GRADES OF RECOMMENDATION FOR ACTION STATEMENTS

GRADE RECOMMENDATION QUALITY OF EVIDENCE

A Strong A preponderance of level I studies, but at least 1 level I study directly on the topic supports therecommendation.

B Moderate A preponderance of level II studies, but at least 1 level II study directly on the topic supportsthe recommendation.

C Weak A single level II study at <25% critical appraisal scores or a preponderance of level III and IVstudies, including consensus statements by content experts support the recommendation.

D Theoretical/foundational

A preponderance of evidence from animal or cadaver studies, from conceptual/theoreticalmodels/principles, or from basic science/bench research, or published expert opinion inpeer-reviewed journals supports the recommendation.

P Best practice Recommended practice based on current clinical practice norms, exceptional situations wherevalidating studies have not or cannot be performed, and there is a clear benefit, harm or cost,and/or the clinical experience of the guideline development group.

R Research An absence of research on the topic, or conclusions from higher-quality studies on the topic arein disagreement. The recommendation is based on these conflicting conclusions or absentstudies.

tion of Infants With CMT; Physical Therapy Interventionfor Infants With CMT; and Physical Therapy Dischargeand Follow-Up of Infants With CMT. Thirteen recommen-dations for research are placed within the text where thetopics arise, and are collated at the end of the document.

Table 1 presents the criteria used to determine theevidence level of diagnostic, intervention studies and prog-nostic studies that support each of the recommended ac-tion statements. Levels 1 and 2 differentiate stronger fromweaker studies by integrating the research design and thequality of the execution and/or reporting of the study.

Table 2 presents the criteria for the grades assignedto each action statement. The grade reflects the overalland highest levels of evidence available to support theaction statement. Throughout the guideline, each actionstatement is preceded by a letter grade, followed by thestatement, and a summary of the quality of the supportingliterature.



S U M M A R Y O F A C T I O N S T A T E M E N T S

IDENTIFICATION AND REFERRAL OF INFANTS WITHCONGENITAL MUSCULAR TORTICOLLIS (CMT)

A. Action Statement 1: IDENTIFY NEWBORNS ATRISK FOR CMT. Physicians, nurse midwives, obstet-rical nurses, nurse practitioners, lactation specialists,physical therapists (PTs), or any clinician or family mem-ber must assess the presence of neck and/or facial orcranial asymmetry within the first 2 days of birth, usingpassive cervical rotation, passive lateral flexion, and/orvisual observation as their respective training supports,when in the newborn nursery or at time of delivery. (Ev-idence Quality: I; Recommendation Strength: Strong)

B. Action Statement 2: REFER INFANTS WITHASYMMETRIES TO PHYSICIAN AND PHYSICALTHERAPIST. Physicians, nurse midwives, obstetricalnurses, nurse practitioners, lactation specialists, PTs,or any clinician or family member should refer infantsidentified as having positional preference, reduced cer-vical range of motion, sternocleidomastoid masses, fa-cial asymmetry and/or plagiocephaly to the primarypediatrician, and a PT as soon as the asymmetry isnoted (Figure 1). (Evidence Quality: II; RecommendationStrength: Moderate)

B. Action Statement 3: DOCUMENT INFANT HIS-TORY. Physical therapists should obtain a general med-ical and developmental history of the infant prior to aninitial screening, including 9 specific health history fac-tors: age at initial visit, age of symptom onset, pregnancyhistory, delivery history including birth presentation anduse of assistance, head posture/preference, family his-tory of CMT, other known or suspected medical condi-tions, and developmental milestones. (Evidence Quality:II; Recommendation Strength: Moderate)

B. Action Statement 4: SCREEN INFANTS. When aclinician, parent, or caretaker indicates concern abouthead or neck posture and/or developmental progres-sion, PTs should perform a screen of the neurological,musculoskeletal, integumentary, and cardiopulmonarysystems, including screens of vision, gastrointestinalfunctions, positional preference and the structural andmovement symmetry of the neck, face, and head, spineand trunk, hips, upper and lower extremities, consistentwith state practice acts. (Evidence Quality: 22-15; Rec-ommendation Strength: Moderate)

B. Action Statement 5: REFER INFANTS FROMPHYSICAL THERAPIST TO PHYSICIAN IF REDFLAGS ARE IDENTIFIED. Physical therapists shouldrefer infants to the primary pediatrician for additionaldiagnostic testing when a screen or evaluation identi-fies red flags (eg, poor visual tracking, abnormal muscletone, extramuscular masses, or other asymmetries incon-

sistent with CMT), or when, after 4 to 6 weeks of initialintense intervention, in the absence of red flags, littleor no progress in neck asymmetry is noted. (EvidenceQuality: II; Recommendation Strength: Moderate)

B. Action Statement 6: REQUEST IMAGES ANDREPORTS. Physical therapists should obtain copies ofall images and interpretive reports, completed for the di-agnostic workup of an infant suspected of having or diag-nosed with CMT, to inform prognosis. (Evidence Quality:II; Recommendation Strength: Moderate)

PHYSICAL THERAPY EXAMINATION OF INFANTSWITH CMT

B. Action Statement 7: EXAMINE BODY STRUC-TURES. Physical therapists should document the initialexamination and evaluation of infants with suspected ordiagnosed CMT for the following body structures:

� Infant posture and tolerance to positioning insupine, prone, sitting, and standing for body sym-metry, with or without support, as appropriatefor age. (Evidence Quality: II; RecommendationStrength: Moderate)

� Bilateral passive cervical rotation and lateralflexion. (Evidence Quality: II; RecommendationStrength: Moderate)

� Bilateral active cervical rotation and lateral flexion.(Evidence Quality: II; Recommendation Strength:Moderate)

� Passive range of motion (PROM) and active range ofmotion (AROM) of the upper and lower extremities,inclusive of screening for possible hip dysplasia orspine/vertebral asymmetry. (Evidence Quality: II;Recommendation Strength: Moderate)

� Pain or discomfort at rest, and during passive andactive movement. (Evidence Quality: IV; Recom-mendation Strength: Weak)

� Skin integrity, symmetry of neck and hip skin folds,presence and location of an SCM mass, and size,shape, and elasticity of the SCM muscle and sec-ondary muscles. (Evidence Quality: II; Recommen-dation Strength: Moderate)

� Craniofacial asymmetries and head/skull shape.(Evidence Quality: II; Recommendation Strength:Moderate)

P. Action Statement 8: CLASSIFY THE LEVEL OFSEVERITY. Physical therapists and other health careproviders should classify the level of CMT severity choos-ing 1 of 7 proposed grades (Figure 2). (Evidence Quality:V; Recommendation Strength: Best Practice)

B. Action Statement 9: EXAMINE ACTIVITY ANDDEVELOPMENTAL STATUS. During the initial andsubsequent examinations of infants with suspected or



Fig. 1. Referral flow diagram. Solid lines represent initial communication pathway; dashed lines indicate ongoing communication.

diagnosed CMT, PTs should document the types ofand tolerance of position changes, and examine motordevelopment for movement symmetry and milestones,using an age-appropriate, valid, and reliable standardizedtool. (Evidence Quality: II; Recommendation Strength:Moderate)

B. Action Statement 10: EXAMINE PARTICIPA-TION STATUS. The PT should document the par-ent/caregiver responses regarding:

� Whether the parent is alternating sides when breastor bottle-feeding the infant. (Evidence Quality: II;Recommendation Strength: Moderate)

� Sleep positions. (Evidence Quality: II; Recommen-dation Strength: Moderate)

� Infant time spent in prone. (Evidence Quality: II;Recommendation Strength: Moderate)

� Infant time spent in equipment/positioning de-vices, such as strollers, car seats, or swings.(Evidence Quality: II; Recommendation Strength:Moderate)

B. Action Statement 11: DETERMINE PROGNOSIS.Physical therapists should determine the prognosis forresolution of CMT and the episode of care after comple-tion of the evaluation, and communicate it to the parents/caregivers. Prognoses for the extent of symptom resolu-tion, the episode of care, and/or the need to refer formore invasive interventions are related to the age of ini-tiation of treatment, classification of severity (Figure 2),intensity of intervention, presence of comorbidities,rate of change, and adherence with home program-ming. (Evidence Quality: II; Recommendation Strength:Moderate)



Fig. 2. Congenital muscular torticollis classification grades and decision tree. Solid lines represent clinical reasoning paths; dashed linesportray the less supported option of trying “first choice interventions,” for a limited time, prior to referral for more invasive interventions.

PHYSICAL THERAPY INTERVENTION FOR INFANTSWITH CMT

B. Action Statement 12: PROVIDE THE FOLLOW-ING 5 COMPONENTS AS THE FIRST-CHOICEINTERVENTION. The physical therapy plan of carefor the infant with CMT or postural asymmetry shouldminimally address these 5 components:

� Neck PROM. (Evidence Quality: II; Recommenda-tion Strength: Moderate)

� Neck and trunk AROM. (Evidence Quality: II; Rec-ommendation Strength: Moderate)

� Development of symmetrical movement. (Evi-dence Quality: II; Recommendation Strength:Moderate)



� Environmental adaptations. (Evidence Quality: II;Recommendation Strength: Moderate)

� Parent/caregiver education. (Evidence Quality: II;Recommendation Strength: Moderate)

C. Action Statement 13: PROVIDE SUPPLEMEN-TAL INTERVENTION(S), AFTER APPRAISINGAPPROPRIATENESS FOR THE INFANT, TO AUG-MENT THE FIRST-CHOICE INTERVENTION.Physical therapists may add supplemental interventions,after evaluating their appropriateness for treating CMTor postural asymmetries, as adjuncts to the first-choiceintervention when the first-choice intervention has notadequately improved range or postural alignment, and/orwhen access to services is limited, and/or when the in-fant is unable to tolerate the intensity of the first-choiceintervention, and if the PT has the appropriate trainingto administer the intervention. (Evidence Quality: III;Recommendation Strength: Weak)

B. Action Statement 14: REFER FOR CONSUL-TATION WHEN OUTCOMES ARE NOT FULLYACHIEVED. Physical therapists who are treating in-fants with CMT or postural asymmetries should initiateconsultation with the primary pediatrician and/or spe-cialists about alternative interventions when the infantis not progressing. These conditions might include whenasymmetries of the head, neck, and trunk are not resolv-ing after 4 to 6 weeks of initial intense treatment; after6 months of treatment with only moderate resolution; orif the infant is older than 12 months on initial exami-nation and either facial asymmetry and/or 10 to 15◦ of

difference persist between the left and right sides for anymotion; or the infant is older than 7 months on initialexamination and a tight band or SCM mass is present;or if the side of torticollis changes. (Evidence Quality: II;Recommendation Strength: Moderate)

PHYSICAL THERAPY DISCHARGE AND FOLLOW-UPOF INFANTS WITH CMT

B. Action Statement 15: DOCUMENT OUTCOMESAND DISCHARGE INFANTS FROM PHYSICALTHERAPY WHEN CRITERIA ARE MET. Physicaltherapists should document outcome measures and dis-charge the infant diagnosed with CMT or asymmetricalposture from physical therapy services when the infanthas full passive ROM within 5◦ of the nonaffected side,symmetrical active movement patterns throughout thepassive range, age-appropriate motor development, novisible head tilt, and the parents/caregivers understandwhat to monitor as the child grows. (Evidence Quality:II-III; Recommendation Strength: Moderate)

B. Action Statement 16: PROVIDE FOLLOW-UPSCREENING OF INFANTS 3 to 12 MONTHS POST-DISCHARGE. Physical therapists who treat infants withCMT should examine positional preference, the struc-tural and movement symmetry of the neck, face and head,trunk, hips, upper and lower extremities, and develop-mental milestones, 3 to 12 months following dischargefrom physical therapy intervention, or when the child ini-tiates walking. (Evidence Quality: II; RecommendationStrength: Moderate)



I N T R O D U C T I O N

Purpose of CPGsThe Section on Pediatrics (SoP) of the American Phys-

ical Therapy Association (APTA) supports the develop-ment of clinical practice guidelines (CPGs) to assist pedi-atric physical therapists (PTs) with the identification andmanagement of infants and children with participation re-strictions, activity limitations and body function and struc-ture impairments, related to developmental, neuromuscu-lar, cardiorespiratory, and musculoskeletal conditions, asdefined by the World Health Organization’s (WHO) In-ternational Classification of Functioning, Disability andHealth (ICF) (www.who.int/classification/icf/en/).

In general, the purpose of a CPG is to help PTs knowwho, what, how, and when to treat, and who and when torefer, and to whom. Specifically, the purposes of this CPGfor congenital muscular torticollis (CMT) are to:

� Describe the evidence supporting physical therapymanagement of CMT, including screening, exami-nation, evaluation, diagnosis, reasons to refer, prog-nosis, intervention, discharge, and long-term assess-ment of outcomes.◦ Define and classify common CMT impairments

of body functions and structures, activity limi-tations and participation restrictions and, wherepossible, align descriptions with ICF terminology(Appendix 1-ICF/ICD 9/10 Codes).

◦ Identify appropriate outcome measures for CMTto establish baseline measures and assess changesresulting from physical therapy interventions.

◦ Identify interventions supported by current bestevidence to address impairments of body func-tions and structures, activity limitations, and par-ticipation restrictions associated with CMT.

� Create a reference publication for PTs, physicians,families and caretakers, other early childhood orhealth care service providers, academic instructors,clinical instructors, students, policy makers, and pay-ers, that describes, using internationally accepted ter-minology, best current practice of pediatric PT man-agement of CMT.

� Identify areas of research that are needed to improvethe evidence base for physical therapy managementof CMT.

Background and Need for a CPG on CongenitalMuscular Torticollis

Physical therapy and conservative interventions arewell documented in the literature for the treatment ofinfants with torticollis.1,2 Earlier studies were primarily

written by physicians regarding the diagnostic process,incidence and presentation, and surgical management ofCMT from an orthopedic or biomechanical perspective.3-7

Subsequent studies of conservative care typically focusedon passive stretching applied in a standardized manner fora specific period of time,8-11 similar to experimental inter-ventions as opposed to individualized clinical care plans.More recent literature on the incidence of developmentaldelays in children treated for CMT,12-14 and the apparentincrease in incidence of CMT15 and plagiocephaly16

associated with the Back to Sleep campaign, and its relatedreduction in time spent in prone12 suggest that a broaderdevelopmental approach is needed for the managementof CMT.

A pivotal study on physical therapy interventionsfor CMT by Emery2 has been considered by many asthe standard for conservative intervention.17,18 While heroutcomes focus on neck range of motion (ROM), thestudy clearly establishes that conservative management ofstretching and parent education on handling and home ex-ercises can effectively reduce CMT, thus avoiding surgeryfor the vast majority of infants. Karmel-Ross19 compileda comprehensive collection of articles in a special editionof Physical & Occupational Therapy in Pediatrics, providingfoundational and clinical guidance for rehabilitation man-agement of infants with CMT. Since that publication, manystudies have addressed selected aspects of CMT identifica-tion and rehabilitation. The Cincinnati Children’s Hospi-tal guideline on CMT20 is the first to use evidence-basedprocesses to support recommendations on CMT manage-ment; though it was updated in 2009,20 its levels of ev-idence are unique to the institution, the literature is ap-praised by consensus and expert opinion rather than byapplying a systematic appraisal rubric, and the guidelinerecommendations are hierarchically categorized but notgraded. Since that publication, there have been numer-ous studies published on the diagnosis, imaging, and careof infants with CMT, as well as advances in evidence-based practice methods. The roles of PTs in the treat-ment of CMT are clearly documented in survey resultsfrom Canada21 and New Zealand22; though no studies de-scribe these roles in the United States. Given the numberof newer publications, the SoP initiated the developmentof this CPG to build on these earlier foundational docu-ments and to create a document that would be more con-sistent with evolving international evidence-based prac-tice methodologies and ICF terminology. This guidelineaddresses CMT from a broader developmental perspectiveconsistent with pediatric physical therapy, but does notaddress plagiocephaly, nor is it applicable to cases of sud-den onset, acquired CMT evidenced later in infancy orchildhood.



http://www.who.int/classification/icf/en/

The Scope of the GuidelineThis CPG uses literature available through May 2013

to address the following aspects of PTs’ management ofCMT in infants and young children. It is assumed through-out the document that the PT has newborn and early child-hood experience. The CPG addresses these aspects of CMTmanagement:

� Diagnostic and referral processes.� Reliable, valid, and clinically useful screening and

examination procedures that should be documented.� Determination of prognosis for intensity of interven-

tion and duration of care.� Effective first-choice physical therapy interventions,

dosage guidance, and supplemental interventions.� Conditions under which a child should be referred

for consideration of more invasive interventions.� The prognosis if CMT is left untreated, treated with

conservative interventions, or treated with invasiveinterventions.

� The important outcomes of intervention and patientcharacteristics affecting outcomes.

Statement of IntentThis guideline is intended for clinicians, family mem-

bers, educators, researchers, policy makers, and payers. Itis not intended to be construed or to serve as a legal stan-dard of care. As rehabilitation knowledge expands, clinicalguidelines are promoted as syntheses of current researchand provisional proposals of recommended actions un-der specific conditions. Standards of care are determinedon the basis of all clinical data available for an individ-ual patient/client and are subject to change as knowledgeand technology advance, patterns of care evolve, and pa-tient/family values are integrated. This CPG is a summaryof practice recommendations that are supported with cur-rent published literature that has been reviewed by ex-pert practitioners and other stakeholders. These parame-ters of practice should be considered guidelines only, notmandates. Adherence to them will not ensure a success-ful outcome in every patient, nor should they be con-strued as including all proper methods of care or ex-cluding other acceptable methods of care aimed at thesame results. The ultimate decision regarding a particularclinical procedure or treatment plan must be made us-ing the clinical data presented by the patient/client/family,the diagnostic and treatment options available, the pa-tient’s values, expectations, and preferences, and the clin-ician’s scope of practice and expertise. The guidelinedevelopment group suggests that significant departuresfrom accepted guidelines should be documented in pa-tient records at the time the relevant clinical decisions aremade.

M E T H O D S

The guideline development group (GDG) was ap-pointed by the SoP to develop a guideline to address PTroles in the management of CMT. The procedures aredocumented in Pediatric Physical Therapy23 and were de-rived from the review of selected guideline developmentmanuals24-28 in order to meet the goals of the SoP and toproduce guidelines that parallel international processes.

Determining Purpose, Scope, and Outlineof Content

In 2011, the GDG solicited topics from the SoP lead-ership and members of its Knowledge Translation TaskGroup to identify what clinicians expected a CPG on CMTto cover. Fifty topics were organized into an online sur-vey. Fourteen members of the SoP Knowledge TranslationTask Group and clinicians who expressed interest in theCMT guidelines completed the survey, ranking the impor-tance of each topic. These rankings influenced the scopeand outline of the CPG content; 45 of the 50 topics areaddressed in this document. (Survey results are availablefrom the authors.)

Literature ReviewThe GDG, volunteers from the SoP Knowledge Trans-

lation Task Group, and clinicians from the SoP were in-vited to conduct literature searches on CMT and sub-mit the search histories and results to a dedicated e-mail account. This provided a range of search strategiesand access to a wider range of databases. The combinedcomprehensive literature search used these key wordsseparately and in combination: congenital muscular tor-ticollis, torticollis, plagiocephaly, infant asymmetry, cer-vical ROM, physical therapy, physiotherapy, and exer-cise. The databases include: MEDLINE(R), CINAHL, EBMReviews–Cochrane Database of Systematic Reviews 2005to June 2010, EBM Reviews–ACP Journal Club 1991 toJune 2010, EBM Reviews–Database of Abstracts of Reviewsof Effects 2nd Quarter 2010, EBM Reviews–CochraneCentral Register of Controlled Trials 2nd Quarter 2010,EBM Reviews–Cochrane Methodology Register 3rd Quar-ter 2010, EBM Reviews–Health Technology Assessment3rd Quarter 2010, EBM Reviews–NHS Economic Evalu-ation Database 3rd Quarter 2010, EMBASE 1980 to 2010Week 32, ERIC 1965 to July 2010, Health and PsychosocialInstruments 1985 to July 2010, PsycINFO 1806 to AugustWeek 2 2010, PubMed Clinical Queries, PEDro, GoogleScholar, and the Web of Science. Additional sources wereidentified using the same key words by searching specificjournals, manual searching of article and textbook refer-ence lists, and through Google and Google Scholar. Studies



published through May 2013 were included in the CPG;a reference librarian from the University of Southern Cal-ifornia validated the search for the years 1990 to 2012.Operational definitions were adopted for clarity of writing(Appendix 2).

Articles were included if they were written in Englishand if they informed the diagnosis, examination, interven-tion, or prognosis of CMT as related to physical therapy.Research designs included RCTs, cohort, case-control, caseseries, and case studies. Study outcomes included rangeof cervical motion, cervical muscle strength, ROM andstrength measures, posture, motor development, treatmentdurations, need for surgical intervention, and parent sat-isfaction with physical therapy. Articles were excluded ifthey focused only on plagiocephaly, did not report datadirectly related to physical therapy diagnosis, interventionor prognosis for CMT, or were poster or presentation ab-stracts. A total of 193 articles were reviewed, and a total of167 articles informed this document.

Critical Appraisal ProcessThe critical appraisal forms used for diagnostic and

intervention literature are based on adaptations from Fet-ters and Tilson29 and have been described previously.23

Selected diagnosis and intervention articles were criticallyappraised by the GDG to establish the test standards. Vol-unteers completed critical appraisals of the test articlesto establish interrater reliability. Volunteers qualified tobe appraisers with agreement of 90% or more. Appraiserswere randomly paired to read each of the remaining diag-nostic or intervention articles. Each dyad compared scoresfor agreement and submitted a single critical appraisal formwhen complete. Discrepancies in scoring were negotiatedby the readers. In the event that a score could not be agreedon, a member of the GDG made the final determination.

Levels of EvidenceThe levels of evidence evolved from the APTA Section

on Orthopedics30 to incorporate critical appraisal scores.29

Recommendation grades are derived to be consistent withthe BRIDGE-Wiz software deontics.31 BRIDGE-Wiz isdesigned to generate clear and implementable recommen-dations consistent with the Institute of Medicine rec-ommendations for transparency.28 The GDG believes itis important to consider all controlled research designs(randomized controlled trials, meta-analyses, systematicreviews, diagnostic, prognostic, prospective, and cohortstudies) to equalize their importance in rehabilitation de-cision making. While it is recognized that experimentalstudies are the only designs that suggest causality, the dif-ference between level I and II evidence is based on method-ological rigor within each design, rather than solely on thestudy design. Thus, the score from the critical appraisal

process determines whether an intervention or diagnosisstudy is a level I or II.

Theoretical/foundational (designated by D) and prac-tice recommendations (designated by P) are not generatedwith BRIDGE-Wiz. The former are based on basic scienceor theory, and the latter are determined by the GDG tobe representative of current physical therapy practice orexceptional situations that exist for which studies cannotbe performed.

Research recommendations (designated by R) are pro-vided by the GDG to identify missing or conflicting evi-dence, for which studies might improve measurement andintervention efficacy, or minimize unwarranted variation.

AGREE II ReviewThis CPG was evaluated by the third author and 2 ex-

ternal reviewers using AGREE II.32 AGREE II is an estab-lished instrument designed to assess the quality of clinicalpractice guidelines using 23 items in 6 domains (see Table,Supplemental Digital Content 1, available at http://links.lww.com/PPT/A48). Each item is rated using a 7-pointscale, with 7 representing the highest score. Each item in-cludes specific criteria, although reviewer judgment is nec-essary in applying the criteria. The AGREE II appraisal pro-cess supported an iterative process to improve the qualityof the guideline. Domain scores for the CMT CPG rangedfrom 98% to 67%. The 3 reviewers unanimously agreed torecommend the Guideline for use. Scores were discussedby the GDG; where possible, items were addressed in theCPG following the AGREE II reviews. Thus, the percent-ages are likely higher in the final version of the CPG.

External Review Process by StakeholdersThis CPG underwent 3 formal reviews. First draft re-

viewers were invited stakeholders representing medicine,surgery, nursing, midwifery, PT clinicians and researchers,and a parent representative. The second draft was postedfor public comment on the APTA SoP website; notices weresent via email and an electronic newsletter to SoP members,literature appraisers, and clinicians who inquired aboutthe CPG during its development. Two Pediatric PhysicalTherapy journal reviewers read the third draft. Commentsfrom each round of reviews were considered for successiverevisions.

Document StructureThe guideline action statements are organized accord-

ing to the APTA Patient Management Model,33 beginningwith recommendations for referral and screening, physicaltherapy examination, evaluation, intervention, outcomemeasurement, and concluding with follow-up and collabo-ration. References, acknowledgments, and appendices areincluded at the end.



http://links.lww.com/PPT/A48

http://links.lww.com/PPT/A48

Each action statement is introduced with its assignedrecommendation grade, followed by a standardized con-tent outline generated by the BRIDGE-Wiz software. Ithas a content title, a recommendation in the form of anobservable action statement, indicators of the evidencequality, and the strength of the recommendation. Theaction statement profile describes the benefits, harms,and costs associated with the recommendation, a delin-

eation of the assumptions or judgments made by theGDG in formatting the recommendation, reasons for in-tentional vagueness in the recommendation, and a sum-mary and clinical interpretation of the evidence sup-porting the recommendation. An iterative process wasused for discussion, literature review, and external re-view to develop the content of action statements andprofiles.



C O N G E N I T A L M U S C U L A R T O R T I C O L L I S

Incidence and Progression of Congenital MuscularTorticollis

Congenital muscular torticollis is a common pedi-atric musculoskeletal condition, described as a posturaldeformity of the neck evident at birth or shortly there-after. Synonyms include fibromatosis colli for the masstype,34 wry neck,35 or twisted neck.36 It is typically char-acterized by a head tilt to one side or lateral neck flexion,with the neck rotated to the opposite side due to unilateralshortening or fibrosis of the sternocleidomastoid (SCM)muscle. It may be accompanied by cranial deformation37

or hip dysplasia,38 brachial plexus injury,39-41 distal ex-tremity deformities, and less frequently, presents as a headtilt and neck rotation to the same side. The incidenceof CMT ranges from 0.3 to 2%42 of newborns, but hasbeen reported as high as 16% (n = 102),37 and may occurslightly more frequently in males.17,43 Congenital muscu-lar torticollis may be present at birth when selected mor-phologic and birth history variables converge, such as inlarger babies, breech presentation, and/or the use of for-ceps during delivery,44 or it may evidence during the firstfew months,18,37 particularly in those with milder forms.

Congenital muscular torticollis is typically catego-rized as one of 3 types: postural CMT presents as theinfant’s postural preference15,45 but without muscle or pas-sive ROM restrictions and is the mildest presentation; mus-cular CMT presents with SCM tightness and passive ROMlimitations; and SCM mass CMT, the most severe form,presents with a fibrotic thickening of the SCM and passiveROM limitations.46 These presentations, in combinationwith the age of initial diagnosis, are highly predictive of thetime required to resolve ROM limitations. In general, in-fants identified early with postural CMT have shorter treat-ment episodes, and those who are identified later, after 3 to6 months of age and who have SCM mass CMT, typicallyhave the longest episodes of conservative treatment, andmay ultimately undergo more invasive interventions.10,46

Pediatricians or parents may be the first to noticean asymmetry, and pediatricians may provide the ini-tial instructions about positioning and stretching to theparents.21 The American Academy of Pediatrics, in itsBright Futures Guidelines For Health Supervision of Infants,Children, and Adolescents publication, recommends check-ing the newborn for head dysmorphia at 1 week and skulldeformities at 1 month, but does not specify checking theneck for symmetry until 2 months, when the term torticol-lis is first mentioned.47 If the asymmetry does not resolveafter initial exercise instructions by pediatricians, infantsare typically then referred to physical therapy.21 While thispattern of identification and eventual referral to physicaltherapy is described in the literature, the GDG is in strongagreement that pediatricians should be screening for CMTthroughout the first 3 to 4 months, such that infants with

any persistent postural asymmetries are referred as early aspossible for physical therapy intervention.

Typical physical therapy management of CMT is aconservative approach that includes passive stretching, po-sitioning for active movement away from the tightness, andparent education for home programs.22,48 Earlier inter-vention is more quickly effective than intervention startedlater. If started before 1 month of age, 98% achieve nearnormal range within 1.5 months, but waiting until after 1month of age prolongs intervention to about 6 months, andwaiting until after 6 months can require 9 to 10 monthsof intervention, with progressively fewer infants achiev-ing near normal range49; current CMT guidelines do notaddress the time of referral.

Reports of untreated CMT are rare,3,5 but there are de-scriptions of unresolved or reoccurring CMT in older chil-dren or adults, who later undergo Botox injections42,50,51

or surgery for correction of movement limitations and con-sequent facial asymmetries.5,52,53 The incidence of spon-taneous resolution is unknown, and there are no fool-proof methods for predicting who will resolve and whowill progress to more severe or persistent forms.

Finally, CMT has been associated with hip dysplasia,4

brachial plexus injury,39-41 distal extremity deformities,early developmental delay,14,39 persistent developmentaldelays,13 facial asymmetry, which may affect function andcosmesis,6 and temporal–mandibular joint dysfunction.54

Thus, early identification and treatment is critical for earlycorrection, early identification of secondary or concomi-tant impairments, and prevention of future complications.

Early ReferralThe evidence is strong that earlier intervention results

in the best outcomes11,49; thus, early referral is the ideal. Areferral flow diagram is provided (Figure 1) that outlinesthe possible referral and communication pathways basedon time of observation, identification of “red flags,” priormodels, and current literature.1,39,42,55-57

The referral flow diagram is divided into 2 distincttime frames: birth to 3 days, representing the newborn pe-riod; and 3 days and older, representing the typical timeafter discharge to home. During the newborn period, manydifferent health care providers may observe the infant be-cause they are involved in the birth and/or postnatal care.These health care providers are in the ideal position toobserve the symmetry of the head on the shoulders andscreen for passive and active movement limitations, thoughscreening for CMT at this point in development is not con-sidered the norm. After the infant is at home, the mostlikely observers will be the primary pediatrician and theparents or other caregivers. Regardless of who performsthe initial screen, infants with asymmetry should undergo



an evaluation to rule out nonmuscular causes of CMT. IfCMT or a persistent postural preference is diagnosed, theinfant should be referred to the PT.

Early referral to physical therapy translates to earlierintervention and prevention of secondary sequelae,2,8,18,58

and, by reducing treatment duration and avoiding addi-tional or more invasive interventions, is cost-effective. Pre-liminary evidence suggests that treatment by a PT maybe more efficient in achieving symmetrical movementsthan when parents are the sole providers of home ex-ercise programs,59 thus referral to the PT should not bedelayed.

IDENTIFICATION AND REFERRAL OF INFANTS WITHCONGENITAL MUSCULAR TORTICOLLIS (CMT)

A. Action Statement 1: IDENTIFY NEWBORN IN-FANTS AT RISK FOR CMT. Physicians, nurse mid-wives, obstetrical nurses, nurse practitioners, lactationspecialists, PTs or any clinician or family member mustassess the presence of neck and/or facial or cranial asym-metry within the first 2 days of birth, using passive cervi-cal rotation, passive lateral flexion, and/or visual obser-vation as their respective training supports, when in thenewborn nursery or at site of delivery. (Evidence Quality:I; Recommendation Strength: Strong)

Action Statement ProfileAggregate Evidence Quality: Level I. Based on the

odds ratios (OR) and confidence intervals (CI) for predic-tion of CMT from facial asymmetry (OR: 21.75; CI: 6.60-71.70) and plagiocephaly (OR: 23.30; CI: 7.01-70.95).60

Benefits:� Early identification of infants at risk for CMT or other

conditions that might cause asymmetries.� Early onset of intervention for infants with CMT if

referred.� Reduced episode of care to resolve CMT, with con-

sequent reduction in costs.� Reduced risk of needing more aggressive interven-

tions (Botox or surgery) in the future.

Risk, Harm, and Cost:� Potential of overidentification of infants may increase

costs.� Potential of increasing parent anxiety.

Benefit–Harm Assessment: Preponderance of BenefitValue Judgments: NoneIntentional Vagueness: NoneRole of Patient/Parent Preferences: Although parents

may not be skilled in infant assessment, mothers who arebreastfeeding may notice that the infant has greater dif-

ficulty feeding on one side, or may notice asymmetry inphotographs, and these observations should trigger ROMscreening by an attending clinician.

Exclusions: None

Supporting Evidence and Clinical InterpretationThe intent of this action statement is to increase early

identification of infants with CMT for early referral tophysical therapy. Newborns (up to the first 3 days of life)can be easily screened by checking for full neck rotation(chin turns past shoulder to 100◦)37 and lateral flexion(ear approximates shoulder)37 while stabilized in supine61

during the first postnatal examination. Newborns are athigher risk for CMT if their birth history includes a com-bination of longer birth body length, primiparity and birthtrauma (including use of instruments for delivery), facialasymmetry, and plagiocephaly. Odds ratios from multiplelogistic regression for these 5 factors are, from highest tolowest: plagiocephaly 23.30 (CI: 7.01-70.95), facial asym-metry 21.75 (CI: 6.60-71.70), primiparity 6.32 (CI: 2.34-17.04), birth trauma 4.26 (CI: 1.25-14.52), and birth bodylength 1.88 (CI: 1.49-2.38). This indicates that infantswith asymmetrical heads or faces have as much a 22-foldincrease in abnormal sonogram for CMT; primiparity a 6-fold increase; birth trauma a 4-fold increase; and birth bodylength an almost 2-fold increase.44 No one item predictsCMT alone, but the presence of 2 or more of the above riskfactors warrants referral for preventative care and parenteducation.

The importance of early identification of CMT iswell supported. Pediatricians and PTs in Canada agreethat infants identified with CMT should receive formalintervention.21 When intervention is started at earlier ages,it results in shorter episodes of care11 that anecdotallyhave financial, psychological, and quality-of-life implica-tions for the family.

R. Research Recommendation 1. Researchers should con-duct studies to determine whether routine screening atbirth increases the rate of CMT identification and/or in-creases false positives.

B. Action Statement 2: REFER INFANTS WITHASYMMETRIES TO PHYSICIAN AND PHYSICALTHERAPIST. Physicians, nurse midwives, obstetricalnurses, nurse practitioners, lactation specialists, PTs,or any clinician or family member should refer infantsidentified as having positional preference, reduced cervi-cal ROM, sternocleidomastoid masses, facial asymmetry,and/or plagiocephaly to their primary pediatrician and aPT as soon as the asymmetry is noted. (Evidence Quality:II; Recommendation Strength: Moderate)



Action Statement ProfileAggregate Evidence Quality: Level II evidence sup-

ports that when intervention is started earlier, it takes lesstime to resolve the ROM limitations (P < .001),46,49 andthere is less need for subsequent surgical intervention (P <

.005).8,49 Authors suggest that stretching interventions areeasier for parents to administer when infants are younger,before the neck musculature strengthens and cooperationdeclines.2,49

Benefits:� Early differential diagnosis to confirm CMT.� Early onset of intervention to resolve reduced ROM

and asymmetries.� Early parental education to facilitate symmetrical de-

velopment.� Greater infant cooperation with intervention in the

first few months of life.

Risk, Harm, and Cost:� Increased cost for treatment of asymmetries that

some suggest may spontaneously resolve.

Benefit–Harm Assessment: Preponderance of BenefitValue Judgments: Early referral to physical therapy

ensures early onset of intervention, which strongly cor-relates with shorter episodes of care, greater success ofconservative measures, and thus can lower overall costs ofcare. A pediatric PT will also screen and follow the infantfor developmental delays, feeding challenges, and environ-mental factors that may be associated with or contributeto positional preference or CMT.

Intentional Vagueness: For infants suspected of othercauses of asymmetries (ie, bony anomalies, fractures, neu-rological damage, or extramuscular masses), the PT shouldcollaborate with the primary pediatrician to make a defini-tive diagnosis of CMT prior to onset of physical therapyinterventions. The focus and prioritization of interventionsmay change depending on the type of limitations the in-fant presents with (eg, neurological, musculoskeletal, car-diopulmonary, integumentary, and/or gastrointestinal).

Role of Patient/Parent Preferences: Infant cooper-ation with stretching is easier in the first 2 monthsthan when started after the infant develops greater headcontrol,2,62 thus infant compliance is greater and parentadherence to home programs may be optimized.

Exclusions: Infants suspected of having nonmuscu-lar conditions that might cause asymmetrical or torticollisposturing should be fully examined by the appropriate spe-cialists to rule out confounding diagnoses prior to initiatingphysical therapy.

Supporting Evidence and Clinical InterpretationClinicians involved with the delivery and care of

infants are in the ideal position to assess the presence of

CMT. If screening for CMT occurs routinely at birth, in-fants who are at high risk for CMT, or who have identifiedSCM tightness or masses, can have physical therapy initi-ated when the infant is most pliable. CMT may not appearuntil several weeks postdelivery; thus, the 1-month wellbaby check-up by the pediatrician may be the first point ofidentification. Early treatment for infants with positionalpreference or confirmed diagnoses of CMT has excellentoutcomes, with more than 95% to 100% only needingstretching10,11 or techniques that facilitate functional ac-tivation of weak neck muscles.62 The earlier interventionis started, the shorter the duration of intervention10,46,49

and the need for later surgical intervention is significantlyreduced.7,8,11 In contrast to recommendations to providestretching instruction to the parents when CMT is identi-fied at birth, and only refer to physical therapy at 2 monthsof age if the condition does not resolve,10 recent studiessuggest that early physical therapy reduces the time toresolution by approximately 1 month versus 3 monthsfor parent-only stretching,59 that infants become moredifficult to stretch as they age and develop neck control,2

and that earlier intervention can negate the need for latersurgery.8

Physical therapists typically address a broad rangeof developmental and environmental factors that influ-ence outcomes, such as parental ability to comply withthe home exercise programs, distance from the clin-ical setting,21 feeding positions, and the infant’s mo-tor and developmental progression.21,22 Since develop-mental delays are detectable at 2 months in infantswith CMT,63 and the delays may be more related totime spent in the prone position,63 instruction to par-ents and early modeling of prone play time may helpto negate potential developmental lags that can occurwith CMT.

R. Research Recommendation 2. Researchers should con-duct studies to clarify the predictive baseline measuresand characteristics of infants who benefit from immedi-ate follow-up, and to compare the cost–benefit of earlyphysical therapy intervention and education to parentalinstruction and monitoring by physicians. Longitudinalstudies of infants with CMT should clarify how the tim-ing of referral and initiation of intervention impact bodystructure and functional outcomes, and overall costs ofcare.

B. Action Statement 3: DOCUMENT INFANT HIS-TORY. Physical therapists should obtain a general med-ical and developmental history of the infant, including 9specific health history factors, prior to an initial screen-ing. (Evidence Quality: II; Recommendation Strength:B-Moderate)



Action Statement ProfileAggregate Evidence Quality: IIBenefits: A complete history of the pregnancy, deliv-

ery, known medical conditions, developmental milestones,and daily management of the infant can provide informa-tion important to the diagnosis by the PT, prognosis, andintervention.

Risk, Harm, and Cost: NoneBenefit–Harm Assessment: Preponderance of BenefitValue Judgments: NoneIntentional Vagueness: NoneRole of Patient/Parent Preferences: Parents/

caregivers can provide much of the history through in-terview and preadmission information packets; however,obtaining medical records may provide specifics that oralhistories may not.

Exclusions: None

Supporting Evidence and Clinical InterpretationIn addition to documenting the standard intake infor-

mation (eg, date of birth, date of examination, gender, birthrank, and reason for referral or parental concerns, generalhealth of the infant, and other health care providers thatare seeing the infant), the PT should specifically documentthe following birth and health history factors:

� Age at initial visit.8,22

� Age of onset of symptoms.18,22

� Pregnancy history including maternal sense ofwhether the baby was “stuck” in one position duringthe final 6 weeks of pregnancy.61

� Delivery history including birth presentation(cephalic or breech).18

� Use of assistance during delivery such as forceps orvacuum suction.11,17,37,40

� Head posture/preference15,37,64,65 and changes in thehead/face.7,17,18,37,66

� Family history of torticollis or any other congenitalor developmental conditions.67,68

� Other known or suspected medical conditions.39,65

� Developmental milestones appropriate forage.13,14,69

B. Action Statement 4: SCREEN INFANTS. Whena clinician, parent, or caretaker indicates concern abouthead or neck posture and/or developmental progression,PTs should perform a screen of the neurological,musculoskeletal, integumentary, and cardiopulmonarysystems, including screens of vision, gastrointestinalfunctions, positional preference and the structural andmovement symmetry of the neck, face, and head, spineand trunk, hips, upper and lower extremities, consistentwith state practice acts. (Evidence Quality: 22-15;Recommendation Strength: Moderate)

Action Statement ProfileAggregate Evidence Quality: The benefits of screen-

ing infants with suspected CMT are based on a com-bination of level II-IV evidence and expert clinicalconsensus,15,42,65,70 within which selected proceduresused by PTs to identify red flags have varying levels ofevidence.

Benefits:� Thorough screening can identify asymmetries and

determine if they are consistent with CMT or not.� Screening for other causes of asymmetry (ie, hip dys-

plasia, scoliosis, clavicle fracture, brachial plexus in-jury, congenital, and/or genetic conditions) facilitatesreferral to specialists.

� For infants being treated for other conditions (ie,brachial plexus injuries, reflux, and hip dysplasia)that are associated with higher risks for developingCMT, parents can receive preventative instruction forCMT.

Risk, Harm, and Cost: The cost of a PT screening ifthe infant is not already being treated for other conditions.

Benefit–Harm Assessment: Preponderance of BenefitValue Judgments: In some geographic locations or

practice settings, particularly where autonomous practiceis permitted, PTs may be the first to screen an infantfor postural asymmetries. Infants may present for reasonsother than head or neck postures, but observing overallsymmetry is an element of a thorough physical therapyscreen.

Intentional Vagueness: NoneRole of Patient/Parent Preferences: NoneExclusions: None

Supporting Evidence and Clinical InterpretationIn situations where infants present without physician

referral for CMT (eg, locations with direct access to phys-ical therapy or infants who are being treated by a PT forother conditions), the PT should conduct a systems screento rule out red flags and other potential causes of observedasymmetrical posturing.33,39,64,65 The screen is conductedthrough parent report and observation of the infant in dif-ferent positions. The purpose of the screen is to determinewhether the PT should continue with a detailed examina-tion for CMT, or refer for consultations when red flags aresuspected. Elements of the screen include:

History: per parent report as described in ActionStatement 3.

Systems Screen: Per the APTA Guide to PhysicalTherapist Practice,33 a systems screen traditionallyincludes examinations of the following 4 domains.For infants with CMT, a gastrointestinal historyshould be added.



Musculoskeletal Screen: Screen for symmetricalshape of the face, skull, and spine36,54; symmet-rical alignment of the shoulder and hip girdles withparticular attention to cervical vertebral anomalies,rib cage symmetry,56 and hip dysplasia66; symmet-rical passive ROM of the neck; and palpation forSCM masses or restricted movement.71

Neurological Screen: Screen for abnormal or asym-metrical tone, retention of primitive reflexes, re-sistance to movement, cranial nerve integrity,brachial plexus injury; temperament (irritability,alertness); achievement of age-appropriate devel-opmental milestones,39,42,56,65,69,71 inclusive of cog-nitive and social integration within the familysetting.72 Perform a visual screen comprised ofsymmetrical eye tracking in all directions, notingvisual field defects and nystagmus as potential oc-ular causes of asymmetrical postures.42,71,73

Integumentary Screen: Screen for skin fold symme-try of the hips61,65 and cervical regions19,70; colorand condition of the skin, with special attentionto signs of trauma that might cause asymmetricalposturing.65

Cardiorespiratory Screen: Screen for symmetricalcoloration, rib cage expansion, and clavicle move-ment to rule out conditions that might causeasymmetrical posturing (eg, brachial plexus in-juries and Grisel syndrome)65,68; check for acuteupper respiratory tract distress.41,74 The infantshould be alert and appropriately vocal, withoutwheezing.

Gastrointestinal History: Interview the parents for aninfant history of reflux or constipation,41 or prefer-ential feeding from one side,15 both of which cancontribute to asymmetrical posturing.

Red Flags: The following are the basis for consultationwith the primary pediatrician, referring physician, or otherspecialists:

� Suspected hip dysplasia.4,38,65,75,76

� Skull and/or facial asymmetry, including plagio-cephaly and brachycephaly.36,37,44

� Atypical presentations, such as tilt and turn to thesame side, or plagiocephaly and tilt to the same side.

� Abnormal tone.41,65,71

� Late-onset torticollis at 6 months or older, whichcan be associated with neurological conditions, tissuemass, inflammation, or acquired asymmetry.41,65

� Visual abnormalities including nystagmus, strabis-mus, limited or inconsistent visual tracking, and gazeaversion.65,71

� History of acute onset, which is usually associatedwith trauma or acute illness.39,77

R. Research Recommendation 3. Researchers should con-duct studies to identify the precision of screening proce-dures specific to CMT.

B. Action Statement 5: REFER INFANTS FROMPHYSICAL THERAPIST TO PHYSICIAN IF REDFLAGS ARE IDENTIFIED. Physical therapists shouldrefer infants to the primary pediatrician for additionaldiagnostic testing when a screen or evaluation identi-fies red flags (eg, poor visual tracking, abnormal muscletone, extramuscular masses, or other asymmetries incon-sistent with CMT) or when, after 4 to 6 weeks of initialintense intervention, in the absence of red flags, littleor no reduction in neck asymmetry is noted. (EvidenceQuality: II; Recommendation Strength: Moderate)

Action Statement ProfileAggregate Evidence Quality: Level II evidence based

on cohort follow-up studies of moderate size.Benefits:

� Infants with red flags are identified and can be co-managed by the primary pediatrician and other spe-cialists.

� Early coordination of care may resolve CMT morequickly and with less cost, as well as initiate appro-priate intervention for conditions other than CMT.

� Parent support starts earlier for effective home pro-gramming, parent education, and the balance of in-tervention with parental needs to enjoy and bondwith their infant.

Risk, Harm, and Cost:� Cost of care is increased in the cases where red flags

are ruled out or the PT has misidentified red flags.� Additional family stress due to concerns about the

infant having more serious health conditions.

Benefit–Harm Assessment: Preponderance of BenefitValue Judgments: Level II evidence demonstrates that

earlier diagnosis of CMT is better, but there is no litera-ture that documents the risks and consequences of a lackof immediate follow-up for the 20% of infants who haveconditions other than CMT.39 While the recommendationstrength is categorized as moderate based on level II evi-dence, the GDG believes that referral to the primary pedia-trician should be categorized as a must, when any red flagsare identified to collaborate in the comanagement of careof the infant who may have both CMT and other medicalconditions.

Intentional Vagueness: In settings with direct accessto physical therapy services, parents may seek evaluationservices for an infant with postural asymmetry withoutreferral from the primary pediatrician. The GDG is



intentionally vague about the range of 4 to 6 weeks asthe amount of time that a PT should treat an infant whois not responding to intervention. Since younger infantstypically change more quickly than older infants, the GDGrecommends that infants younger than 2 months who arenot responding to intervention should be referred to theirpediatrician sooner than infants older than 2 months, whomay require more time to respond to treatment. In eithercase, a PT should initiate communication with the primarypediatrician when there are red flags or when a child doesnot respond after 4 to 6 weeks of treatment.

Role of Patient/Parent Preferences: NoneExclusions: None

Supporting Evidence and Clinical InterpretationUp to 18% of cases with asymmetrical head

posturing may be due to nonmuscular causes,39 in-cluding Klippel–Feil,39 neurologic disorders,39,45 ocu-lar disorders,39,73,78,79 brachial plexus injuries includingclavicle fractures,39 paroxysmal torticollis that alternatessides,41 spinal abnormalities,77 and SCM masses.45,70 It iswithin the scope of physical therapy practice to screenfor neuromuscular and musculoskeletal disorders, includ-ing testing for ocular cranial nerve integrity and coordina-tion, abnormal tone, orthopedic alignment, and develop-mental delay,33 and to screen for potential nonmuscularcauses of CMT. Any red flags that are identified shouldbe documented, and the primary pediatrician should beconsulted.

B. Action Statement 6: REQUEST IMAGES ANDREPORTS. Physical therapists should obtain copies ofall images and interpretive reports, completed for the di-agnostic workup of an infant suspected of having or diag-nosed with CMT, to inform prognosis. (Evidence Quality:II; Recommendation Strength: Moderate)


on cohort and outcome studies of moderate size.Benefits:

� Images and imaging reports provide a comprehen-sive picture of the infant’s medical status, includingcomorbidities.

� Images provide visualization of the SCM muscle fiberorganization, and the location and size of fibrotictissue.

� Parents appreciate care that is coordinated and sharedacross disciplines.

Risk, Harm, and Cost: NoneBenefit–Harm Assessment: Preponderance of Benefit

Value Judgments: Per the APTA Guide to PhysicalTherapist Practice,33 requesting relevant clinical reports onan infant’s suspected or diagnosed condition is consideredappropriate gathering of medical history.

Intentional Vagueness: NoneRole of Patient/Parent Preferences: Parents need to

formally release information for reports to be forwarded tothe PT; parents may arrive with reports and images in theirpossession.

Exclusions: None

Supporting Evidence and Clinical InterpretationReports and images from specialized examinations or

laboratory tests can rule out ocular, neurological, skeletal,and oncological reasons for asymmetrical posturing.39,77

In particular, ultrasound images and/or reports may assistwith describing the degree of fibrosis,80 visualizing thesize and location of muscle masses, and determining anappropriate plan of care and treatment duration.18,81,82

R. Research Recommendation 4. Researchers should con-duct studies to determine who would benefit from imaging,at what time in the management of CMT images are useful,and how images affect the plan of care.

PHYSICAL THERAPY EXAMINATION OF INFANTSWITH CMT

B. Action Statement 7: EXAMINE BODY STRUC-TURES. Physical therapists should document the initialexamination and evaluation of infants with suspected ordiagnosed CMT for the following body structures:

� Infant posture and tolerance to positioning insupine, prone, sitting, and standing for body sym-metry, with or without support, as appropriatefor age. (Evidence Quality: II; RecommendationStrength: Moderate)

� Bilateral passive cervical rotation and lateralflexion. (Evidence Quality: II; RecommendationStrength: Moderate)

� Bilateral active cervical rotation and lateral flexion.(Evidence Quality: II; Recommendation Strength:Moderate)

� Passive and active ROM of the upper and lowerextremities, inclusive of screening for possible hipdysplasia or spine/vertebral asymmetry. (EvidenceQuality: II; Recommendation Strength: Moderate)

� Pain or discomfort at rest, and during passive andactive movement. (Evidence Quality: IV; Recom-mendation Strength: Weak)

� Skin integrity, symmetry of neck and hip skinfolds, presence and location of an SCM mass, andsize, shape, and elasticity of the SCM muscle and



secondary muscles. (Evidence Quality: II; Recom-mendation Strength: Moderate)

� Craniofacial asymmetries and head/skull shape.(Evidence Quality: II; Recommendation Strength:Moderate)

Action Statement ProfileAggregate Evidence Quality: Preponderance of level

II studies based on well-conducted prospective and ret-rospective cohort follow-up studies of small to moderatesample sizes.

Benefits:� Confirms the diagnosis of CMT and identifies

other problems such as hip dysplasia, plagiocephaly,brachycephaly, scoliosis, brachial plexus injury, orother orthopedic and medical conditions.

� Determines the extent of primary and secondary mus-cle involvement, to estimate prognosis.

� Establishes baselines to measure progress of ROM,strength and alignment, and infant’s ability to incor-porate movement through available ranges.

� Facilitates systematic linking of interventions toidentified impairments.

� Standardizes measurement and documentation ofbody structure limitations from CMT to evaluategroup outcomes across clinical settings.

Risk, Harm, and Cost:� Examination of passive cervical rotation may result

in SCM snapping or a sense of “giving way” in ap-proximately 8% of infants.46

� The infant may feel some discomfort or pain, and/ormay cry48,74 due to restricted movement, discomfortwith ROM tests, or intolerance of general handling.

� In infants with undiagnosed orthopedic conditions(eg, osteogenesis imperfecta, hemivertebrae, or cer-vical instability), there is a risk that overly aggressivetesting of passive ROM could cause secondary injury,though this has not been reported.

Value Judgments: The evidence for selected measure-ment approaches varies in strength; however, measures ofpassive and active ROM, strength, and posture must bedocumented as part of any physical therapy examinationand are consistent with current standards of practice.33

For ROM measurement, the GDG recognizes that clinicalpracticality has to be weighed against the desire for themost reliable measures. Use of photography, head mark-ers, and other devices to increase measurement reliabilitymay create undue burdens for the infant, the family, andthe PT in daily clinical practice. While there is only mod-erate to weak evidence to justify the measurement of activecervical ROM, active ROM of the upper and lower extrem-

ities, pain or discomfort, condition of the skin folds, con-dition of the SCM and cervical muscles, and head shape,a lack of evidence is not equated with a lack of clinicalrelevance. Further, documentation of these initial exam-ination findings sets the baseline for regularly scheduledobjective reassessment and outcome measurement.

Intentional Vagueness: There is no vagueness as towhat should be documented. There is variability as to howselected body structures should be measured, due to thelimited number of valid tools or methods.

Role of Patient/Parent Preferences: During testing,parents may perceive that the baby experiences discomfortor that testing positions could potentially harm the baby,resulting in requests to stop testing if the baby is crying.The clinician must be aware and responsive to the par-ents’ perceptions; it is incumbent on the clinician to fullyexplain the importance of the measures and the safety pre-cautions used, so that parents and infants can comfortablyand accurately complete the testing procedures. Cliniciansmay need to provide the infant with breaks during testingto obtain the baby’s best performance and most reliablemeasures. Including the parent in the test procedures mayhelp elicit the infant’s best performance, calm the infant ifunder stress, and generally assist with building trust be-tween the PT and the infant.

Exclusions: NoneNote: Table 3 provides a summary of the evidence on

measurement.

Supporting Evidence and Clinical InterpretationFollowing a thorough history and screening to rule

out asymmetries inconsistent with CMT, the PT conductsa more detailed examination of the infant. The followingitems appear as a checklist, but in practice, the PT simulta-neously observes for asymmetries throughout all examina-tion positions to reduce infant repositioning and increaseinfant cooperation:

� General Posture: Document the infant’s posture andtolerance to positioning in supine, prone, sitting,and standing when CMT is suspected or diagnosed(dependent and independent) (Evidence Quality: II;Recommendation Strength: Moderate)

Observe the infant in all positions, document-ing symmetrical alignment and preferred positioning orposturing.14,15,22,37,89 In supine, document the side oftorticollis,14,15,37,61 asymmetrical hip positions,7,15,61,90

facial and skull asymmetries, restricted active ROM, andasymmetrical use of the trunk and extremities,14,15,37,61 asthese are all typical of CMT.

In prone, document asymmetry of the spine orpresence of scoliosis,5 the head on trunk, asymmetricaluse of the extremities, and the infant’s tolerance to the



TABL

E3:

MEA

SURE

MEN

TEV

IDEN

CETA

BLE

MEA

SUR

EMEN

TO

FIN

TER

EST

TYPE

OF

MEA

SUR

EMEN

TTO

OL

CIT

ATI

ON

S

LEV

ELO

FEV

IDEN

CE,

VA

LID

ITY,

AN

DR

ELIA

BIL

ITY

POSI

TIO

NFO

RM

EASU

REM

ENT

(IN

FAN

TA

ND

EXA

MIN

ERS)

STR

ENG

THS

AN

DLI

MIT

ATI

ON

SW

HA

TN

OR

MS

AR

EU

SED

Pass

ive

sid

eb

end

ing

(S)/

late

ralfl

exio

n(L

)

Art

hro

dia

lp

rotr

acto

rC

hen

get

al,

1999

,1720

00,18

2001

9

NA

for

late

ralfl

exio

nSu

pin

e:2

exam

iner

s;1

mea

sure

san

d1

stab

ilize

sth

esh

ou

lder

s

S—re

pro

du

cib

le;u

sed

inm

any

stu

die

sL—

no

esta

blis

hed

relia

bili

tyfo

rla

tera

lflex

ion

Co

mp

aris

on

of

valu

esto

rig

ht

and

left

Oh

man

and

Bec

kun

g,2

00883

Ref

eren

ced

Kla

cken

ber

g’s

intr

arat

erre

liab

ility

valu

es,0

.94-

0.98

Sup

ine:

2ex

amin

ers;

1m

easu

res

and

1st

abili

zes

the

sho

uld

ers

S—as

sig

ned

PRO

Mva

lues

L—in

fan

tsd

idn

ot

hav

eto

rtic

olli

s

70◦

mea

nPR

OM

Kla

cken

ber

get

al,2

00584

Intr

arat

erre

liab

ility

0.94

-0.9

8Su

pin

ew

ith

hea

dan

db

od

ysu

pp

ort

ed.T

he

PTm

easu

res;

the

seco

nd

exam

iner

stab

ilize

sth

esh

ou

lder

s

S—re

pro

du

cib

lew

ith

hig

hin

trar

ater

relia

bili

tyL—

no

ICC

for

inte

rrat

erre

liab

ility

ICC

hig

her

wh

enm

easu

rin

gth

eaf

fect

edsi

de

than

un

affe

cted

;60◦

,th

ein

fan

t’s

ear

reac

hed

the

sho

uld

er

Go

nio

met

erw

ith

the

leve

lad

apta

tio

n

Kar

mel

-Ro

ss,

1997

19N

ASu

pin

ean

dsi

ttin

gac

cord

ing

toth

ein

fan

t’s

dev

elo

pm

ent.

Insu

pin

eth

eh

ead

issu

pp

ort

edo

ffth

eed

ge

of

the

surf

ace

S—as

sig

nin

gR

OM

valu

esL—

ori

enti

ng

the

go

nio

met

erac

cura

tely

NA

Pho

tog

rap

hy

Kla

cken

ber

get

al,2

00584

ICC

(0.7

4-0.

90)

fair

tog

oo

dSu

pin

e:th

ePT

mea

sure

san

dth

ese

con

dex

amin

erst

abili

zes

the

sho

uld

ers.

The

ph

oto

gra

ph

ista

ken

and

the

exam

iner

dra

ws

on

the

ph

oto

gra

ph

S—co

mp

aris

on

valu

esto

mea

sure

men

tw

ith

pro

trac

tor

L—to

om

any

vari

able

sto

con

tro

l.Ex

tra

step

s.A

uth

or

rep

ort

su

nfe

asib

le

NA

Pho

tog

rap

hy

Rah

linan

dSa

rmie

nto

,20

1085

Intr

arat

erre

liab

ility

0.80

-0.8

5,IC

C(3

.1)

inte

rrat

erre

liab

ility

0.72

-0.9

9,IC

C(2

.1)

Sup

ine:

1ex

amin

erp

lace

sth

ech

ildan

dp

rovi

des

visu

alst

imu

lus

inm

idlin

e

S—m

easu

res

the

infa

nts

rest

ing

po

stu

reL—

tim

e-co

nsu

min

gw

ith

seve

rals

tep

sto

mea

sure

the

ph

oto

gra

ph

Palp

atio

no

fex

ten

sib

ility

Emer

y,19

942

NA

2ex

amin

ers:

the

PTm

easu

res

and

the

seco

nd

exam

iner

stab

ilize

sth

esh

ou

lder

s

Sub

ject

ive

dat

a,n

od

efin

itio

no

fre

sist

ance

NA

,sym

met

ryo

fm

ove

men

tb

yfe

el

(co

nti

nu

ed)



TABL

E3:

MEA

SURE

MEN

TEV

IDEN

CETA

BLE

(con

tinu

ed)

MEA

SUR

EMEN

TO

FIN

TER

EST

TYPE

OF

MEA

SUR

EMEN

TTO

OL

CIT

ATI

ON

S

LEV

ELO

FEV

IDEN

CE,

VA

LID

ITY,

AN

DR

ELIA

BIL

ITY

POSI

TIO

NFO

RM

EASU

REM

ENT

(IN

FAN

TA

ND

EXA

MIN

ERS)

STR

ENG

THS

AN

DLI

MIT

ATI

ON

SW

HA

TN

OR

MS

AR

EU

SED

Pass

ive

cerv

ical

rota

tio

nA

rth

rod

ial

pro

trac

tor

Ch

eng

etal

,19

99,17

2000

,18

2001

9

Inte

rrat

erre

liab

ility

ICC

0.71

Un

pu

blis

hed

dat

a

Sup

ine

wit

hth

eh

ead

sup

po

rted

off

the

edg

eo

fth

esu

rfac

e;2

exam

iner

s,1

mea

sure

san

d1

stab

ilize

sth

esh

ou

lder

s

S—re

pro

du

cib

lean

du

sed

inm

any

stu

die

sL—

un

pu

blis

hed

dat

a

110◦

cerv

ical

rota

tio

n

Oh

man

and

Bec

kun

g,2

00883

Inte

rrat

erre

liab

ility

ICC

0.71

per

Ch

eng

’su

np

ub

lish

edd

ata

Ch

eng

’sm

eth

od

S—as

sig

ned

PRO

Mva

lues

L—in

fan

tsd

idn

ot

hav

eto

rtic

olli

s

110◦

mea

nPR

OM

Go

nio

met

erK

lack

enb

erg

etal

,200

584R

igh

tC

MT

ICC

0.82

-0.9

5fo

rro

tati

on

and

sid

efo

rro

tati

on

and

late

ralfl

exio

n.

ICC

0.58

-0.6

5fo

rro

tati

on

and

sid

efo

rro

tati

on

and

late

ral

flex

ion

toth

en

on

affe

cted

sid

e

Sup

ine

wit

hh

ead

and

bo

dy

on

the

surf

ace.

The

PTm

easu

res

and

the

seco

nd

exam

iner

stab

ilize

sth

esh

ou

lder

s

S—es

tab

lish

ing

intr

arat

erre

liab

ility

L—ce

rvic

alro

tati

on

islim

ited

by

sup

po

rtin

gsu

rfac

e

ICC

hig

her

wh

enm

easu

rin

gth

eaf

fect

edsi

de

than

un

affe

cted

;70-

80◦

wh

enth

ein

fan

t’s

chin

tou

ches

the

sup

po

rtin

gsu

rfac

e

Go

nio

met

erw

ith

the

leve

lad

apta

tio

n

Kar

mel

-Ro

ss,

1997

19N

ASu

pp

ort

edsi

ttin

gac

cord

ing

toth

ein

fan

t’s

dev

elo

pm

ent.

The

seco

nd

exam

iner

stab

ilize

ssh

ou

lder

s

S—va

lues

can

be

assi

gn

edL—

acco

un

tin

gfo

rco

mp

ensa

tio

ns

of

tru

nk

and

sho

uld

ers

100-

120◦

of

cerv

ical

rota

tio

np

erEm

ery

valu

es19

94

Vis

ual

insp

ecti

on

Bo

ere-

Bo

on

ekam

pan

dva

nD

erLi

nd

en-K

uip

er,

2001

15

NA

Sup

ine

S—ea

syto

adm

inis

ter

NA

Palp

atio

no

fex

ten

sib

ility

Cam

ero

nan

dC

amer

on

,199

48N

ASu

pin

e:2

exam

iner

s,1

mea

sure

san

dth

ese

con

dex

amin

erst

abili

zes

the

sho

uld

ers

S—ea

syto

adm

inis

ter;

sub

ject

ive

Sym

met

ryo

fm

ove

men

tb

yfe

el;

gra

des

assi

gn

edb

ym

ild,m

od

erat

e,se

vere

(co

nti

nu

ed)



TABL

E3:

MEA

SURE

MEN

TEV

IDEN

CETA

BLE

(con

tinu

ed)

MEA

SUR

EMEN

TO

FIN

TER

EST

TYPE

OF

MEA

SUR

EMEN

TTO

OL

CIT

ATI

ON

S

LEV

ELO

FEV

IDEN

CE,

VA

LID

ITY,

AN

DR

ELIA

BIL

ITY

POSI

TIO

NFO

RM

EASU

REM

ENT

(IN

FAN

TA

ND

EXA

MIN

ERS)

STR

ENG

THS

AN

DLI

MIT

ATI

ON

SW

HA

TN

OR

MS

AR

EU

SED

Act

ive

late

ral

flex

ion

/sid

eb

end

ing

Mu

scle

Fun

ctio

nSc

ale

Oh

man

etal

,20

0912

Inte

r-an

dIn

trar

ater

relia

bili

tyka

pp

a>

0.9;

ICC

0.9

The

infa

nt

ish

eld

ina

vert

ical

po

siti

on

and

low

ered

toh

ori

zon

tal

S—va

lidan

dre

liab

lem

easu

reo

fla

tera

lflex

ion

stre

ng

thL—

late

ralfl

exio

no

nly

0-5

sco

res;

valid

ated

on

infa

nts

>4

mo

;5/5

isn

orm

alst

ren

gth

of

late

ralfl

exio

n

CR

OM

—in

clin

om

eter

sm

ou

nte

do

ng

lass

hea

dan

dm

agn

etyo

lko

ntr

un

k

Kar

mel

-Ro

ss,

1997

19N

ASu

pp

ort

edsi

ttin

gin

anad

apte

dca

rse

atm

ou

nte

do

nh

ing

e

S—m

easu

res

for

late

ral

flex

ion

L—st

abili

zin

go

fth

eb

od

y.C

hild

nee

ds

hea

dan

dtr

un

kco

ntr

ol

NA

Act

ive

cerv

ical

rota

tio

nV

isu

altr

acki

ng

Pers

ing

,200

316;

Lau

gh

lin,2

01186

NA

Sup

ine:

infa

nts

<4

mo

,an

dsu

pp

ort

edsi

ttin

gin

exam

iner

s’la

pfo

rin

fan

ts>

4m

o

Easy

toad

min

iste

rb

ut

no

valu

es−0

-Co

mp

aris

on

bet

wee

nri

gh

tan

dle

ftra

ng

es

Bo

ere-

Bo

on

kam

pan

dva

nD

erLi

nd

en-K

uip

er,

2001

15

NA

Sup

ine:

1ex

amin

erto

enco

ura

ge

the

infa

nt

totr

ack

S—ea

syto

adm

inis

ter

bu

tn

ova

lues

L—su

bje

ctiv

e−0

-Co

mp

aris

on

bet

wee

nri

gh

tan

dle

ftra

ng

es

CR

OM

—in

clin

om

eter

sm

ou

nte

do

ng

lass

hea

dan

dm

agn

etyo

lko

ntr

un

k

Flet

cher

,200

887In

trar

ater

relia

bili

tyIC

C0.

92fo

rla

tera

lfl

exio

n,I

CC

0.94

for

rota

tio

n

1ex

amin

erw

ith

sub

ject

ind

epen

den

tsi

ttin

gS—

rep

rod

uci

ble

ifth

ech

ildis

old

eran

dco

op

erat

ive

L—ad

ult

so

nly

,hea

dar

ray

nee

ds

tob

ew

orn

No

valu

esfo

rin

fan

ts

You

das

,199

288In

terr

ater

ICC

0.80

;in

trar

ater

ICC

0.67

-0.9

0(m

edia

n=

0.86

)fo

rle

ftla

tera

lfl

exio

n,I

CC

0.60

-0.9

4(m

edia

n=

0.85

)fo

rri

gh

tla

tera

lflex

ion

,0.

81-0

.95

(med

ian

=0.

84)

for

left

rota

tio

n,

and

0.58

-0.9

9(m

edia

n=

0.80

)fo

rri

gh

tro

tati

on

1ex

amin

erw

ith

sub

ject

ind

epen

den

tsi

ttin

gS—

rep

rod

uci

ble

ifth

ech

ildis

old

eran

dco

op

erat

ive

L—ad

ult

so

nly

,hea

dar

ray

nee

ds

tob

ew

orn

No

valu

esfo

rin

fan

ts

Ab

bre

viat

ion

s:C

MT,

con

gen

ital

mu

scu

lar

tort

ico

llis;

CR

OM

,ce

rvic

alra

ng

eo

fm

oti

on

;IC

C,

intr

acla

ssco

rrel

atio

nco

effi

cien

t;N

A,

no

tav

aila

ble

;PR

OM

,p

assi

vera

ng

eo

fm

oti

on

;PT,

ph

ysic

alth

erap

ist.



position. In typically developing infants, greater time spentin prone while awake is positively correlated with higherAlberta Infant Motor Scale (AIMS) scores and fewer delaysin achieving prone extension, rolling, unsupported sitting,and fine motor control.91,92 In infants with CMT, posi-tioning in prone at least 3 times per day is correlated withhigher AIMS scores.12

In sitting, supported sitting, and supported uprightpositions (eg, holding the infant vertically in the air orsupported standing as age appropriate), document asym-metrical preferential postures and compensations in theshoulders, trunk, and hip.7,12,22,56

If feasible, digital photography may be a fast, reliablemethod of measuring preferred positioning in supine.85 Abaseline is drawn through the acromial processes, and an-other line is drawn through the midpoints of both eyes.The intersection angle of the eye line with the shoulderbaseline provides an objective measure of preferred headtilt. Care needs to be taken not to record artifacts of theplacement of the baby on the surface; photos should rep-resent the typical posture to which the baby repeatedlyreverts during the examination session.

� PROM: Document the infant’s passive cervical rota-tion and lateral flexion when CMT is suspected ordiagnosed (Evidence Quality: II; RecommendationStrength: Moderate)

Both passive cervical rotation and lateral flexion orside bending should be measured bilaterally with an arthro-dial protractor as described by Ohman and Beckung.83 Theseverity of CMT is determined by the differences betweenthe left and right measures of ROM. Cervical neutral87

needs to be maintained for all measures, but is easily com-promised when the infant compensates with rotation orextension movements at the end ranges. The PT visuallychecks the cervical neutral position, assuring that the in-fant’s nose, chin, and visual gaze are directed forwards(neutral rotation), with the nose, mouth, and chin verti-cally aligned (neutral lateral flexion) and the ear lobes andbase of the nares are horizontally level (neutral flexion–extension).87

Passive cervical rotation should be measured withthe infant in supine, the head in neutral, and the nosealigned with the 90◦ vertical reference.17,83 This ap-proach with an arthrodial protractor is the most com-monly referenced standard for measuring passive cervicalrotation,13,17,18,37,43,61,62,83 despite a lack of published datato support a reported interrater ICC of 0.71.17 The ben-efit of an arthrodial protractor is that the infant’s head issupported beyond the edge of the supporting table, allow-ing fuller neck rotation and removing the table surface as apossible barrier to full range. Cervical rotation can be mea-sured reliably by the same rater (ICC = 0.87-0.97) using

a goniometer aligned along the support surface with theinfant lying supine, or in the horizontal plane with chil-dren more than 2 years old if they can independently sitand cooperate84; however, values from the method usedby Klackenberg et al84 of 49 to 67 ± 4 to 9◦ are distinctlylower than the 110 ± 6◦ found by others.18,83

The clinical challenge of using either a goniometeror an arthrodial protractor is that they minimally require2 adults; one to stabilize the infant’s trunk on the sup-port surface (and this can be the parent/caregiver) and theother to rotate the head/neck while measuring range. Athird person may be needed to hold the arthrodial protrac-tor in place unless it can be attached to the support sur-face and calibrated to be level. The GDG strongly valuesthe objective measurement of cervical rotation as a meansof establishing a baseline for future comparison. Currentpractice surveys in New Zealand and Canada suggest thatPTs often visually estimate, rather than measure rotationrange with an instrument; the greatest barrier being theabsence of a time-efficient and reliable tool.21,22

Lateral flexion should be measured in supine withthe shoulders stabilized, using an oversized or arthrodialprotractor. PTs can either place their hands on the side ofthe head, or place one hand under the head and the otherhand on the baby’s chest to palpate for trunk movement.The head should be in cervical neutral, avoiding neck ex-tension or flexion. The head is laterally flexed until theear contacts the stabilized shoulder84 while the oppositeshoulder is stabilized; ROM typically reaches 70 ± 2.4◦

with cheek size being the limiting factor.83 This method isreliable (ICC = 0.94-0.98) when the measures are takenby the same person, using the same setup and procedure,and may be more accurate by 2 to 3◦ than photographstaken of the same end-range positions.84

When testing passive ROM, known orthopedic con-ditions may require modification or avoidance of tests (eg,children with osteogenesis imperfecta, congenital hemiver-tebrae, or Down syndrome who have not been cleared forcervical instability). In these cases, the GDG recommendsthat testing for passive range use only very gentle guid-ance through the range, ending at the first palpable sign ofresistance.

R. Research Recommendation 5. Researchers should con-duct studies to develop a reliable, valid, and time-efficientmethod of measuring infant cervical ROM and determinenormative data of cervical passive ROM.

� AROM: Document the infant’s active cervical ROM.(Evidence Quality: II; Recommendation Strength:Moderate).

Active range is considered an important indicator ofsymmetrical development and neck strength7,62,83,93 and



the baby’s integration of PROM for functional activities.Treatment to improve active range is consistent with thegoals of early intervention.72 Asymmetrical movementsand movement compensations can indicate muscle tight-ness, restrictions, or weakness.2,94

Active range is challenging to measure in infants dueto behavior and movement variability, difficulty with iso-lating cervical movements, and a paucity of practical mea-surement tools that capture infant movements in the clini-cal setting in a timely manner.21,22 Studies may list “activemovement” as an outcome but do not describe how it ismeasured, and most PTs rely on visual estimation.22

Physical therapists should measure active cervicalmovement by using one of these techniques, looking foractive and full range in all planes, including diagonals,while the baby is enticed to follow toys, sounds, or otherforms of stimulation to elicit full range.

For the infant who is younger than 3 months, headrotation is tested in supine.86

For the infant who is older than 3 months, test neckrotation while the infant sits in the clinician’s lap who issitting on a rotating stool. The parent entices the infant tomaintain eye contact while the PT rotates the baby awayfrom the parent. The PT observes neck rotation from aboveusing the baby’s nose as a midline indicator as it approachesthe shoulder.86 Additionally, neck flexion and extensioncan be screened in this sitting position.

For infants older than 2 months, the Muscle FunctionScale provides an objective categorization of active lateralflexion in developmentally appropriate positions.83,95 Byholding the infant vertically in front of a mirror and tippingthe baby horizontally, the PT classifies the head rightingposition according to a 6-point scale.95 Typically devel-oping infants rarely show a difference between sides, andinfants with CMT frequently have a difference of 2 to 3points.95 Clinicians should refer to Ohman et al95 for spe-cific reference values and procedures.

R. Research recommendation 6. Researchers should con-duct studies to determine the sensitivity and specificityof the Muscle Function Scale to (1) differentiate infantswith clinically significant limitations from typically devel-oping infants; (2) establish a clinically practical, objectivemethod of measuring active ROM in infants 0 to 3 monthsand infants older than 3 months to assess baselines andchange over time; and (3) determine what, if any, correla-tion between active and passive ROM should be used fordischarge criteria.

� Extremity ROM: Document the infant’s passive andactive ROM of the spine, upper and lower extrem-ities, and screen for developmental dysplasia of thehip (DDH). (Evidence Quality: II; RecommendationStrength: Moderate)

The PT should examine passive and active ROM ofthe spine, shoulder and hip girdle, and arms and legs byobserving the natural movements of the infant and by pas-sively moving the arms and legs through all available rangeat each joint to rule out brachial plexus injuries, clavi-cle fractures, neurological impairments, hypermobility, orCNS lesions.13,39,42,56,57,66 Physical therapists should ob-serve for symmetry and stability of the hip, and symmetryof the leg lengths and gluteal skin folds.90

The incidence of DDH with CMT ranges from 2.5%14

to 17%38 depending on inclusion criteria, and it increaseswith the severity of neck rotation restriction.17 Whileguidelines do not recommend routine screening of all in-fants for DDH,96 infants at risk for or those diagnosed withCMT have a slightly higher incidence.38,76 Factors such asa history of breech position (OR: 4.68 [1.66, 13.03]) or ce-sarean delivery (OR: 5.19 [2.06, 12.04]),75 family history,maternal age less than 20 years, Apgar scores less than 8at 1 minute,97 and being female96 have been associatedwith greater risk of DDH. No single test or observationis sufficient to diagnose the presence of DDH, nor doesthe presence of DDH in young infants necessitate immedi-ate treatment, as more than 90% of newborns with DDHconfirmed by ultrasound may resolve on their own.98 Con-versely, a missed diagnosis of DDH may cause the infantmore difficulty if treated later with bracing or surgery; thus,the Ortolani and Barlow maneuvers and skin fold assess-ment are traditionally included in the evaluation of theinfant younger than 3 months with CMT.90 Although thesensitivity of the tests varies among studies,96,99 the speci-ficity for ruling out DDH is stronger.96,100 After 3 monthsof age, the Ortolani and Barlow maneuvers may not besensitive enough to pick up DDH as the joint capsulestighten.100 For infants older than 3 months, the Galeazzisign (asymmetrical shortening of the affected leg), asym-metrical posture of the legs and skin folds, and restrictionsof hip adductors may be stronger red flags for DDH, espe-cially since it would be expected to resolve by that time.100

� Pain: Document the infant’s pain or discomfort(Evidence Quality: IV; Recommendation Strength:Weak)

The PT should observe for behaviors reflective of dis-comfort or pain reactions in the infant and child duringthe examination process.70,89,101 Pain is not typically as-sociated with the initial presentation of CMT1 but may beassociated with passive stretching.5,102 The infant may cryin response to stretching,102 or in response to handling bythe therapist, and children older than 2 years may be ableto provide self-reports of pain.101 The PT should differen-tiate actual pain responses from discomfort or behavioralreactions to stretching, anxiety, or the stress of an un-usual environment. Despite acknowledging the possibility



of pain, no assessment tools for identifying or rating painare reported in the CMT literature.

There are 3 clinician-rated pediatric pain scales thatquantify infant pain-related behaviors and that do not relyon physiological monitoring (eg, heart rate, blood pres-sure, O2 saturation, and body temperature). The Childrenand Infants’ Postoperative Pain Scale (ChIPPS)103 has beenvalidated for newborns through 5 years of age for postsurgi-cal pain, and is available in English and Portuguese.104 TheFace, Legs, Activity, Crying and Consolability (FLACC) isvalid for children from 2 months to 7 years of age105,106

and in children younger than 3 years before and afteranesthesia.107 The revised FLACC (rFLACC)108 is validfor children 4 to 19 years old including those with cog-nitive impairments. Parent descriptions of their children’sspecific pain reactions are part of the rFLACC, and theclinician can observe for those specifically.

Since the FLACC is valid for the typical age range ofinfants and children treated for CMT, the GDG is recom-mending its use over the ChIPPS or rFLACC. The FLACCis administered by having the clinician rate facial expres-sions, movement, and behavior state with a 3-point scale of“0” = no expression or a quiet state, “1” = occasional ex-pression or movements, and “2” = inconsolable and large,frequent movements” for a maximum of 10 points; lowerscores indicate fewer pain-related behaviors and higherscores indicate more behaviors. Training in the use of theFLACC is required to achieve adequate reliability.107 Caremust be taken to interpret the infant’s behavioral reactionswhen the PT is handling the infant to differentiate cry-ing and behavioral distress due to pain versus discomfort,separation anxiety, or other infant fears. One method todifferentiate pain from behavioral distress is to hand theinconsolable baby back to its parent/caregiver, observinghow quickly the infant quiets. Another option is to havethe caregiver do the handling with PT instruction and ob-serve the infant’s reactions to differentiate true pain fromdiscomfort or behavioral reactions.

R. Research Recommendation 7. Researchers should con-duct studies to describe and differentiate signs of discom-fort from the types of pain reactions typically observed ininfants with CMT during specific testing or interventions,as well as to determine the validity of the FLACC in ratingtrue pain reactions during CMT examinations or interven-tions.

� Skin: Document the condition of the infant’s cervicalskin and hip folds. (Evidence Quality: V; Recommen-dation Strength: Theoretical/Foundational)

Physical therapists should observe the symmetry andcondition of the skin folds around the neck and hips. Typ-ically, the neck skin folds on the anterior affected side are

deeper and reddened.71 Infants with brachycephaly andlimited cervical ROM in all directions may have deeperposterior folds.70 Observe for symmetry of the hip skinfolds in the inguinal and upper thigh area as an indicatorof DDH.65,90

� Muscle: Document the condition of the infant’s mus-culature, and particularly the SCMs and secondarycervical muscles. (Evidence Quality: II; Recommen-dation Strength: Moderate)

Physical therapists should visually inspect and palpateboth SCM muscles and document the side of tightness, thepresence or absence of a fibrous band and/or mass, and ifa mass is present, note its size and location along the SCMmuscle (inferior, middle, superior or entire length).109 Thepresence of a fibrous band and/or mass, particularly a massthat involves more than the distal one third of the muscle iscorrelated with greater severity of the condition.9,109 Thus,these qualities are useful for determining the CMT sever-ity and estimating the episode of care.2,9,17,18,46,66,109 Ul-trasound imaging is useful for quantifying the size, shape,and organization of the fibrous bands or masses66,109-111

and for indicating the amount of muscle fiber realignmentthat occurs over time.109,111,112

Physical therapists should document the presence ofsecondary asymmetries or compensations in the shoul-ders, trunk, hips, and distal extremities while the infantmoves through positions during the examination. Typi-cal compensations include tightness of the upper trapeziusmuscle,113 imbalance of neck muscle strength,83 hiking ofthe shoulder on the side of the involved muscle,114 asym-metrical preference for limb use,7,115 asymmetrical and de-layed protective and righting reactions of the head, neck,and trunk,69 Trendelenburg’s sign in children who arewalking,90 and scoliosis.7 Secondary compensations andasymmetries of movement need to be continually moni-tored across the episode of care as they can develop and/orworsen over time.7,35,54,114

� Craniofacial characteristics: Document the condi-tion of the infant’s craniofacial characteristics to in-clude head shape and facial features. (Evidence Qual-ity: II; Recommendation Strength: Moderate)

Facial asymmetries involve the relative alignment ofthe each side of the jaw, the cheekbones, eye orbits, and earpositions.10,36,37,44,54,61,116 Plagiocephaly refers to asymme-tries of the skull, including the frontal, temporal, parietal,and occipital bones, presenting with posterior unilateralflatness, bilateral flattening (brachycephaly), asymmetri-cal brachycephaly, or flattening on both sides of the skull(scaphocephaly).56,117,118

The incidence of cranial asymmetries in typical single-ton infants is about 13%,118 55.6% in twins,118 and 67%119



to 90%18 of children with CMT have plagiocephaly. Thereported incidence of combined craniofacial asymmetryvaries among studies from 10% in typical newborns37 to100% of infants with CMT.36

Untreated CMT can cause craniofacial asymmetrieson the side of the torticollis, including reduced jaw orramal height, a smaller and elevated eye with changes inthe orbit, (recession of the ipsilateral zygoma), recessionof the ear on the affected side, a flat appearance of the jaw,malocclusion, and possible gum line asymmetry.36,37,54,116

Plagiocephaly can either cause or be a result of CMT.Limited active ROM from CMT may cause skull defor-mation as asymmetrical muscle tensions lead to devel-opment of positional plagiocephaly.1,15,16,36,64,86,118 Con-versely, positional preference of the infant with CMT canlead to asymmetrical muscle activity and persistent po-sitioning of the skull on one side with subsequent de-formation. Finally, for infants with plagiocephaly and noinitial CMT, an asymmetrical resting position of the skullmay cause persistent neck rotation that can lead to SCMtightness.1,15,16,64,86,120

Physical therapists should document asymmetries ofthe skull and face using Argenta’s classifications.117 Themethod is clinically practical, does not require equipmentother than a copy of the scale, and has established interrater (0.51-0.66) and intrarater reliability (0.6-0.85).121

Other methods to quantify head shape asymmetries ex-ist, such as the modified “severity scale for assessment ofplagiocephaly,”122 molding a flexible ruler to the infant’shead shape and tracing the shape,123 3-dimensional com-puterized scanning,124 and plaster of Paris molds of theinfant’s head,119 but these alternatives are sometimes nottolerated well by the infant or are not clinically practicalfor many physical therapy settings.

P. Action Statement 8: CLASSIFY THE LEVEL OFSEVERITY. Physical therapists and other health careproviders should classify the level of CMT severity choos-ing 1 of 7 proposed grades (Figure 2). (Evidence Quality:V; Recommendation Strength: Best Practice)

Action Statement ProfileAggregate Evidence Quality: Clinical and research

experience of the GDG.Benefits:

� Classifying levels of severity may assist with progno-sis and parent education.

� The 7 grade levels integrate 2 of the strongest fac-tors related to outcome: the infant’s age at whichtreatment is initiated and the type of CMT the infantpresents with.

� More precise classification grades are needed to com-pare outcomes across research samples.

Risk, Harm, and Cost: NoneBenefit–Harm Assessment: Preponderance of BenefitValue Judgments: The GDG recommends the use of

its Classification of CMT Severity, recognizing that it hasonly been minimally piloted, and that further research isneeded to validate the 7 levels.

Intentional Vagueness: NoneRole of Patient/Parent Preferences: NoneExclusions: None

Supporting Evidence and Clinical InterpretationFive taxonomies of CMT classification recur in

the literature: age of treatment initiation,11,49 type ofCMT,9,11,13,18 severity of ROM limitations,17,18 presenceof plagiocephaly,56,57 and muscle fiber appearance byultrasound.40,109,125 In most studies, these taxonomiesare detailed enough to answer the research questionsabout incidence of various types, incidence of surgi-cal outcomes, and usefulness of ultrasound as a di-agnostic tool or classification process. At this writing,the use of ultrasound by PTs to determine a classifica-tion of CMT would require advanced training, and isbeyond the scope of typical pediatric physical therapypractice.

When looking for guidance on intervention effective-ness for CMT, study samples typically analyze outcomesaccording to the type of CMT, the age of presentation, orthe ROM limitations,9,58 but no studies have combinedthe factors to determine the interaction effects of age ofinitiation and type of CMT. Both factors are consideredstrongly correlated with outcomes, such that the earlierthe infant is treated and the milder the form of CMT, theshorter the episode of care and the higher the probabilityof complete resolution.49

The GDG proposes a more detailed classificationmethod to add clarity to research and aid communica-tion among clinicians. Figure 2 is a flow diagram that canbe used to guide practice and inform prognosis. The verti-cally aligned ovals, at the left most edge of the diagram, listthe factors that are most relevant to the classification pro-cess (age asymmetry noted, age of referral, type of CMT),followed by diamonds that describe the cycle of PT exami-nation, intervention, and reassessment. To the right are therange of conditions and actions that link the classificationwith PT management.

The 7 grades of severity are defined as follows:Grade 1—Early Mild: These infants present between

0 and 6 months of age, with only postural prefer-ence or muscle tightness of less than 15◦ of cervicalrotation.

Grade 2-—Early Moderate: These infants present be-tween 0 and 6 months of age, with muscle tightnessof 15 to 30◦ of cervical rotation.



Grade 3-–Early Severe: These infants present between0 and 6 months of age, with muscle tightnessof more than 30◦ of cervical rotation or an SCMmass.

Grade 4-–Late Mild: These infants present between7 and 9 months of age, with only postural prefer-ence or muscle tightness of less than 15◦ of cervicalrotation.

Grade 5-–Late Moderate: These infants present be-tween 10 and 12 months of age, with only posturalor muscle tightness of less than 15◦ of cervical ro-tation.

Grade 6—Late Severe: These infants present between7 and 12 months of age, with muscle tightness ofmore than 15◦ of cervical rotation.

Grade 7—Late Extreme: These infants present after 7months of age with an SCM mass or after 12 monthsof age with muscle tightness of more than 30◦ ofcervical rotation.

Clinicians should begin the classification process atthe top of the diagram. The age that asymmetry is firstnoted should be documented followed by the age of refer-ral for treatment. Classifications are first dichotomized aseither “early” or “late” and have a range of severity withinthese 2 categories. The age of referral in combination withthe type of CMT determines the classification grade. Forexample, Classification Grade 2, Early Moderate, is as-signed to an infant referred to the PT either prior to 90days of age (3 months) or between 4 and 6 months withSCM muscle tightness and a limitation in cervical rotationof 15 to 30◦. A Classification Grade 7, Late Extreme, isassigned to an infant referred to the PT after 1 year of agewith muscle tightness and limitation in cervical rotationROM greater than 30◦ and or an SCM mass. The GDG rec-ommends that these grades also be used to describe patientstudy samples in order to better understand the impact ofselected interventions on more clearly defined subsets ofinfants.

Decisions regarding treatment intensity and durationtake into consideration each of the factors within the large,center oval: Classification Grade, Access to Services, Pa-tient/Caregiver Adherence (with interventions), MuscleTissue Elasticity, and Comorbidities. Action Statement 11regarding prognosis supports the idea that the earlier andmore intense the intervention, the shorter the episode ofcare and the more complete the resolution of symptoms.No specific recommendation of intensity of treatment isappropriate for all cases. Regardless of severity, if PT treat-ment is initiated, passive stretching and active positioningshould be frequently performed throughout each day andspecific to the limitations, with responses to treatment reg-ularly evaluated for effectiveness. While a minimum of 1.5months49 and a maximum of 36 months2 of conservative

treatment is reported, the majority of studies cite a rangeof 4 to 6 months in duration for intervention.

R. Research Recommendation 8. Researchers should con-duct studies to determine a reliable, valid, and clinicallypractical method of measuring lateral flexion, and to de-termine how the severity of lateral flexion may affect theClassification of CMT Severity grades.

B. Action Statement 9: EXAMINE ACTIVITY ANDDEVELOPMENTAL STATUS. During the initial andsubsequent examinations of infants with suspected ordiagnosed CMT, PTs should document the types of andtolerance to position changes, and examine motor devel-opment for movement symmetry and milestones, usingan age-appropriate, valid, and reliable standardizedtool. (Evidence Quality: II; Recommendation Strength:Moderate)

Action Statement ProfileAggregate Evidence Quality: Level II evidence from

cohort and outcome studies.Benefits:

� Early detection of developmental delays, neurologicalimpairments, movement capabilities, muscle func-tion in developmental positions, and infant prefer-ences help to direct the plan of care.

� Provides opportunities for parent education on typ-ical development, importance of prone playtime, al-ternative positioning, and reinforcement of parentadherence to home programs.

� Standardizes measurement and documentation ofmotor activity to evaluate group outcomes acrossclinical settings for infants with CMT.

Risk, Harm, and Cost:� No risks or harms.� Some standardized tests are proprietary and thus

have associated costs for the forms and test manuals.Proficiency in administering the tests may requiretraining.

Benefit–Harm Assessment: Preponderance of BenefitValue Judgments: Measures of the infant’s activity,

symmetry of movements, and developmental progressionmust be documented as part of any physical therapy exam-ination. These are consistent with professional standardsof practice33 and clinical practice specific to CMT.21,22

Intentional Vagueness: NoneRole of Patient/Parent Preferences: Parents may per-

ceive that the baby experiences discomfort from the testingpositions or that the prone position is harmful, and mayrequest that testing not continue if the baby is crying. Theclinician should fully explain the importance of varying



the infant’s positions, including use of prone positioning,which may be avoided by parents due to misinterpretationof Back to Sleep instructions.12

Exclusions: None

Supporting Evidence and Clinical InterpretationInfants with CMT are shown to have a higher in-

cidence of persisting developmental delay in early child-hood in comparison to the typical population,13 and maydemonstrate those delays as early as 2 months.12 Manymay resolve by 10 months12 but approximately 10% maynot.14 Physical therapists should use a standardized toolwith established predictive validity to monitor infants withCMT for potential developmental delays, and if identified,should address remediation of those delays in their plansof care. The GDG recommends using age-appropriate, re-liable, and valid standardized tools, such as the Test of In-fant Motor Performance through 4 months of corrected age(http://thetimp.com/) and the AIMS from 4 to 18 monthsof corrected age,126 during the initial and periodic reex-aminations. While neither requires certification to admin-ister the tools, the validity of the scores and test-retestreliability may be improved following formal training. Ad-ditionally, the PT should observe and document asymme-tries of age-appropriate developmental activity, movement,and upper and lower limb use throughout all examinationpositions.7

R. Research Recommendation 9. Researchers should con-duct studies to identify the best developmental screeningtests to use for infants with suspected or diagnosed CMT,from birth through 12 months. This research would enablestandardization of measures to document outcomes acrossstudies.

B. Action Statement 10: EXAMINE PARTICIPA-TION STATUS. The physical therapist should docu-ment the parent/caregiver responses regarding:

� Whether the parent is alternating sides when breastor bottle-feeding the infant. (Evidence Quality: II;Recommendation Strength: Moderate)

� Sleep positions. (Evidence Quality: II; Recommen-dation Strength: Moderate)

� Infant time spent in prone. (Evidence Quality: II;Recommendation Strength: Moderate)

� Infant time spent in equipment/positioning devices,such as strollers, car seats, or swings. (EvidenceQuality: II; Recommendation Strength: Moderate)

Action Statement ProfileAggregate Evidence Quality: A predominance of level

II prospective cohort follow-up studies with small samplesizes.

Benefits:� Identifies routine passive positioning that facilitates

asymmetrical positions of the head, neck, and trunk.� Provides information about the general developmen-

tal activities and position preferences of the infant.� Provides opportunities for parent/caregiver educa-

tion and counseling about positioning and activitiesthat facilitate symmetrical development.

Risk, Harm, and Cost: NoneBenefit–Harm Assessment: Preponderance of BenefitValue Judgments: NoneIntentional Vagueness: NoneRole of Parent or Patient Preferences: Parents and

caregivers must accurately describe the infant’s daily careroutines, so positioning and home exercise programs canbe tailored to maximize implementation opportunities.Fear of blame for the infant’s condition may lead par-ents/caregivers to provide inaccurate descriptions. Clini-cians should be sensitive to this and may need to build alevel of trust with the parents/caregivers before an accuratedescription can be obtained.

Exclusions: None

Supporting Evidence and Clinical InterpretationConsensus exists about the need to assess across

all the domains of the ICF, including infant participa-tion in daily routines, to develop a comprehensive planof care.21,22,69 Moderately strong evidence suggests thatspecific activities either are red flags for possible asym-metrical development or are the consequences of existingasymmetries.

Positioning: Documentation should address position-ing when awake and asleep, while feeding, and while us-ing positioning devices (eg, car seats, changing tables, andcribs). The purpose of asking parents/caregivers about po-sitioning is to prevent deformational plagiocephaly that canlead to CMT,57 to correct positional preference that canlead to CMT and plagiocephaly,37,56,64 and to treat CMTif present. Three aspects of positioning support an interac-tion effect with CMT resolution: use of prone positioning;asymmetrical handling to activate weak neck musculatureand active ROM toward the limited side; and feeding fromalternate sides.

Prone positioning while awake for greater than 1 cu-mulative hour per day, with no minimum amounts of timeper opportunity, appears to offset the transient effects ofsupine sleep positions on motor skill acquisition.127,128

Supine positioning is associated with positional preferenceand consequently may facilitate asymmetrical neck ROMand secondary development of plagiocephaly.15,120 Infantswho spend more time in prone and side lying positions re-duce the effect of preferred positioning15 and keep better



http://thetimp.com/

pace with motor milestones.12,129 Although prone sleepingis counter to the Back to Sleep recommendations,130 it hasbeen associated with faster achievement of developmentalmilestones.131

The conscientious use of positioning during wake-ful activities (eg, play, feeding, and dressing) facilitatessymmetrical development of head shape,57,132 active andpassive neck motion,48,57 midline hand play,15 toler-ance of prone positioning,128 and achievement of motormilestones.62,133 Conscientious positioning means that theparent actively places the infant in positions during play,on changing tables, in cribs or carries the infant in waysthat require head righting, rotation toward the restrictedside, neck and upper body extension,62 or visual attractiontoward the tight side. Active movement toward the affectedside10 and alternation of trunk and limb movements134

help to counteract asymmetries and prevent potential ones.For the infant with positional preference, these activitiesmay reduce the preference and avoid consequential tight-ness.

Parents are reported to avoid prone positioning withinfants who are typically developing because the infantdoes not tolerate the position or because the infant hasalready achieved independent sitting.128 Education aboutthe importance of prone playtime is critical for infants withsuspected or diagnosed CMT, as they have multiple risks ofasymmetrical development and delayed motor milestones.Physical therapists should assess each parent’s ability tocarry out exercises and home program positioning.

Feeding: Physical therapists should document theinfant’s feeding positions and difficulties as reported bythe parent/caregiver during the initial and periodic eval-uations. Feeding problems have been identified in in-fants with CMT and/or plagiocephaly as asymmetrical jawpositioning,135 preference for side of nursing,64,120 and /orside of bottle-feeding.58,120 As many as 44% of infantswith CMT may demonstrate a feeding preference to oneside,58 and as many as 2.4% are described as having ad-ditional feeding problems.66 In conjunction with infantpreference, the parent’s preferred side or hand dominancemay also bias positioning to bottle-feed from the sameside.15 Conversely, infants who breastfeed from both sideshave a lower incidence of skull deformation and torti-collis, possibly due to the frequency of position changesas compared to infants who are bottle-fed on the sameside of the caregiver at each feeding.136 Intervention thataddresses alternating sides for feeding can effectively in-crease symmetrical positioning and reduce preferred po-sitioning by the infant. Interviewing parents/caregiversabout their comfort with alternating feeding positions isa common practice,21,22 is consistent with family-centeredcare,72 and provides an opportunity to suggest positioningstrategies.

Equipment/Positioning Devices: Physical therapistsshould document the amount of time the infant spendsin positioning equipment as reported by the parents (eg,positioning/seating devices, strollers, car seats, cribs, orswings).86 Persistent use of supportive equipment, in lieuof time spent playing in prone or side lying, may facili-tate the deformation of the developing skull due to grav-itational forces, which increases the risk of CMT andother asymmetrical developmental movement patterns.The PT should discuss practical strategies with the par-ents/caregivers regarding positioning and movement facil-itation, including alternating positioning of toys and place-ment in cribs,7,136 and ensuring frequent opportunities toplay in prone from an early age.12,70,133 Avoidance of proneplacement by parents can occur if the infant does not toler-ate prone well; the discussion offers an opportunity to as-sess parent/caregiver comfort and provide graded strategiesfor prone positioning that build on the infant’s tolerance.

B. Action Statement 11: DETERMINE PROGNO-SIS. Physical therapists should determine the progno-sis for resolution of CMT and the episode of care aftercompletion of the evaluation, and communicate it to theparents/caregivers. Prognoses for the extent of symptomresolution, the episode of care, and/or the need to re-fer for more invasive interventions are related to theage of initiation of treatment, classification of severity(Figure 2), intensity of intervention, presence of comor-bidities, rate of change, and adherence to home program-ming. (Evidence Quality: II; Recommendation Strength:Moderate)

Action Statement ProfileAggregate Evidence Quality: Level II-IV cohort stud-

ies and case reports with long-term follow-up.Benefits:

� Classifies the severity of CMT in the infant for com-munication purposes.

� Links the examination results and severity level toclassification and associated interventions and/or re-ferrals.

� Provides guidance on the frequency and dosage ofintervention(s) across episodes of care.

� Allows parents/caregivers to psychologically preparefor what to expect from the PT and the range ofpossible outcomes for their infants.

� Assists parents with understanding and implement-ing the plan of care.

� Articulates the relationship of examination resultsto expected outcomes for documentation, includingletters of medical necessity.

Risk, Harm, and Cost: Lack of determining a progno-sis by either the referring pediatrician or the PT may lead to



underestimation of the severity of CMT, resulting in inad-equate or untimely delivery of care and/or parent/caregiverconfusion about what to expect.

Benefit–Harm Assessment: Preponderance of BenefitValue Judgments: The GDG supports the need to

document the potential for improvement of CMT priorto initiating intervention. The PT’s prognosis is the bridgebetween the evaluation of initial examination results andclassification of severity with the associated interventionswithin an expected timeframe; thus, the prognosis shouldinclude both objective outcomes to achieve, and timeframes in which to achieve them. Articulating the prog-nosis for physical therapy management ensures clear com-munication of expectations for the parents/caregivers, andsets objective milestones as a basis for referral back to theprimary health care provider if outcomes are not met.

Intentional Vagueness: NoneRole of Patient/Parent Preferences: The prognosis for

improvement, or the time to achieve change, may need tobe adjusted based on the parent/caregiver ability to complywith a home program designed by the PT.

Exclusions: None

Supporting Evidence and Clinical InterpretationA PT is responsible for determining a prognosis fol-

lowing the patient evaluation.33 A prognostic statementshould include the expected outcome in objective mea-surable terms, the time frame for intervention to achievethe outcomes, and a description of the potential coursesof the condition if treated or not. The prognosis for fullresolution of CMT that is treated conservatively prior to 3months of age is 100% and lower (75%) when treated after3 months of age.11 The later the onset of treatment afteridentification of the condition, the lower the chance of fullresolution2,5,49,58,59 and the greater the need for surgery.49

Tatli et al40 report 94% resolution of CMT symptoms forinfants if treated by a PT before 24 weeks with a home pro-gram of positioning, including infants with masses. Theability of the caregivers to frequently implement a homeprogram of active positioning and passive stretching alsocorrelates with a high level (94%) of full resolution.59

The challenge is to identify the appropriate level ofintervention intensity to remediate the limitations that arepresent and to prevent secondary impairments. Essentially,the earlier and more intense the intervention, the shorterthe episode of care and the more complete the resolutionof symptoms.5,10,17,49,112,137 No specific recommendationof intensity of treatment is appropriate for all cases. Opera-tional definitions of treatment intensity vary across studieswith frequencies of home exercises ranging from 8 times aday10 to 2 times a day,8 or as unspecified frequencies perday but specific repetitions and durations of holds (eg, 4sets of 15 repetitions).112 Ohman et al59 provide prelimi-

nary evidence of better outcomes when infants are treatedby a PT versus parents, but the combination of physicaltherapy and a home program is the more frequent inter-vention plan.2,9,43,112

The time frame for change is estimated based on theage at CMT identification and the age at treatment initi-ation. Infants younger than 3 months may only need 1.5to 3 months of care, whereas infants older than 3 months,or who initiate treatment several months or more after di-agnosis, will require 3 to 6 months of intervention. Prog-nosis is also related to the extent of fibrous mass at initialdiagnosis80 with longer treatment durations with more fi-brosis; however, if treatment is initiated before 3 months ofage, then 99% have resolution of symptoms. The severityof ROM restrictions is noted by Emery2 to be the best pre-dictor of treatment duration. Within the estimated episodeof care, the PT should be documenting changes in all ob-jective measures to demonstrate the effectiveness of thechosen interventions.

Some infants will not gain sufficient active or pas-sive ROM without more invasive interventions.138 The 2most commonly reported are surgical lengthening or re-lease of the SCM muscle and, more recently, injections ofbotulinum toxin (Botox).

The prognosis for needing surgery is based on ex-tent and severity of symptoms,1,8,11,49,137 including the tis-sue condition,125 with an incidence as low as 5% whenstretching is initiated in the first few months after birth.46

The severity of limitation in cervical ROM, presence of amass, and an older age at initiation of treatment all affectprognosis. Limitations in cervical ROM of more than 15◦

or having an SCM mass, and presenting after 1 month,combined with older age at diagnosis are strongly corre-lated with the need for surgery at a later age.9 Recom-mendations for surgery are typically made after a periodof conservative treatment, ranging from a minimum of 3months, but more typically, between 6 and 12 months oftreatment.1,7,8,11,66,137,139

Botox injections have been used after conservativephysical therapy treatment has failed to eliminate symp-toms and to prevent surgery,50,113 although only Oleszek etal113 objectively measured cervical ROM and head tilt, butnot in all participants. Although initial studies are promis-ing, this represents an off-label use of Botox. Long-termstudies on its effectiveness, side effects, and/or adverse ef-fects are warranted.

PHYSICAL THERAPY INTERVENTION FOR INFANTSWITH CMT

Manual stretching is the most common form of treat-ment for CMT. Active and passive ROM exercises are cho-sen specific to the child’s body structure limitations of tightneck, trunk, and/or upper extremity muscles. Stretching



should elongate the shortened muscles by moving in thedirection opposite to the atypical posture.

It is well supported that the earlier intervention be-gins, the more successful the outcomes and the shorter theduration of intervention. Outcomes of intervention havetypically focused on the incidence of achieving full cervicalpassive ROM and symmetrical head positioning, whetherthrough care, surgery, or botulinum toxin. Cohort studiesprovide rich descriptions of these same outcomes follow-ing typical conservative care, relative to selected variablesof age, ROM limitations, and type of CMT. Passive ROMand symmetrical head posture are important body struc-ture characteristics, but they are only one part of the ICFdisablement model.

Early on, Binder et al7 recognized the importanceof looking at overall development, in addition to neckmobility. Newer concepts of early intervention encouragelooking beyond the infant’s body structure limitations.They stress the importance of perceptual–motor experi-ences within the context of the infant’s social environment,and the contribution of gross and fine motor explorationto the development of cognition.72 The domains ofimpairment, perceptual–motor development, and socialand environmental factors parallel the ICF terminology ofbody structures, activity, and participation, respectively,and should not be viewed as separate identities; ratherthey develop together to form the infant’s cognition.Infants with limited or asymmetrical exploration, asseen in CMT and deformational plagiocephaly,13,14,69,133

have demonstrated delays in early motor developmentthat may have an effect on the development of earlyperceptual–motor skills and, therefore, cognition.72

Therefore, pediatric PTs should treat beyond the bodystructure level to design and provide interventions that in-corporate the infant’s available functional range into ac-tivities that promote age-appropriate participation, andthat promote current and future development and learningacross domains.72

B. Action Statement 12: PROVIDE THE FOLLOW-ING 5 COMPONENTS AS THE FIRST-CHOICEINTERVENTION. The physical therapy plan of carefor the infant with CMT or postural asymmetry shouldminimally address these 5 components:

� Neck PROM. (Evidence Quality: II; Recommenda-tion Strength: Moderate)

� Neck and trunk active ROM. (Evidence Quality: II;Recommendation Strength: Moderate)

� Development of symmetrical movement. (EvidenceQuality: II; Recommendation Strength: Moderate)

� Environmental adaptations. (Evidence Quality: II;Recommendation Strength: Moderate)

� Parent/caregiver education. (Evidence Quality: II;Recommendation Strength: Moderate)

Action Statement ProfileAggregate Evidence Quality: Level II cohort and out-

come studies.Benefits to the Infant:

� Increases infant’s active and passive ROM.� Facilitates normal and prevents, reduces, or elimi-

nates asymmetrical postural, gross motor, skeletal,cognitive, sensory, and visual development.

� Reduces use of environmental supports/equipmentthat may increase asymmetry.

� Avoids or minimizes need for future, more invasiveprocedures.

Benefits to the Parent:� Enables parents to be active and effective caregivers.� Education empowers parents to implement interven-

tions between physical therapy appointments.� Education helps parents to understand the factors

that contribute to asymmetry.� Balances use of supine as the preferred infant posi-

tion by parents, overemphasized by the Back to Sleepcampaign, with activities in prone, side lying, andsitting during supervised, wakeful activities.

� Provides parents with information about typical de-velopmental milestones.

� Reduces potential overall cost of care for CMT withearly intense treatment.

Risk, Harm, and Cost:� Stretching of the SCM can result in muscle snap-

ping, which may or may not cause momentary infantdiscomfort; however, the documented long-term out-comes are positive.46

� Cost of care may be a burden for families.� Parents/caregivers may apply interventions incor-

rectly.� Parents might ease up on home exercises if they per-

ceive that the PT is implementing the treatment.62

Value Judgments: NoneIntentional Vagueness: The duration of treatment is

dependent on the classification of severity of the CMT,with mildest forms requiring an average of 2 to 3 monthsof treatment, and more severe forms requiring up to 5to 6 months of treatment.17 Infants who receive surgicalinterventions may require an additional 418 to 635 monthsof treatment. There are no dosage formulae to linktechnique and duration of stretches, repetitions withineach treatment session, frequency of treatment sessionsper day, overall duration of care, and frequency of clinicvisits, including tapering schedules, to CMT severityclassifications; thus, the GDG cannot define “intensetreatment” except that stretching should be frequentthrough the day, every day.



Role of Parent/Caregiver or Patient Preferences: Par-ent/caregiver adherence to the plan of care is essential forachieving early intense treatment dosages.

Exclusions: NoneNote: Table 4 provides a summary of evidence on

passive stretching.

Supporting Evidence and Clinical InterpretationNeck PROM: Manual stretching is the most com-

monly reported form of treatment for CMT10,11,89,112;however, there are no consistent formulae reported todetermine the intensity of stretching to improve passiverange, nor consensus on the techniques to perform thestretches. The frequency of stretching sessions per day,the number of repetitions and the duration of stretchesand rest periods, and the number of individuals requiredfor the stretches vary across studies. While the specific in-tensity of many approaches is not clearly defined, thereis a trend that more frequent intervention throughoutthe day, every day, results in more rapid resolution ofsymptoms.

Stretching as an intervention should not be painful,and stretches should be stopped if the infant resists.1,48

Low-intensity, sustained, pain-free stretches are recom-mended to avoid microtrauma to the muscle tissue.1 Theoptimal time of the sustained stretch has not been stud-ied, and protocol recommendations range from 180 to 30seconds,140 with one report71 describing progressive toler-ance developing for up to 2 to 3 minutes.

The 2-person technique for stretching has the firstperson stabilizing the infant in supine with the head heldbeyond the support surface and the second person holdingthe head to guide it through the available range of cer-vical rotation and lateral flexion.2,10,141 Alternatively, thesingle-person technique has the infant positioned in supineon the caregiver’s lap with 1 hand stabilizing the chestand shoulders and the other guiding the head through therange.61 Hand placement is important when using eitherthe 1- or 2-person stretch to properly stabilize the infant,to minimize compensatory movements and to guide the in-fant’s head through the available range.2,61,141 The choiceof technique may depend on the size and age of the infantwhen stretching is initiated, with younger, smaller infantsmore easily managed by 1 person, whereas larger or moreactive infants may require 2 people to provide adequatepositioning support.

Neck PROM can also be achieved through position-ing and handling,7,48,62,142 including carrying the infantin side lying with the tighter side down, having the infantsleep or lie on the affected side to obtain a gentle stretch onthe contracted muscle1,7,10,48,142 and while lying prone withthe neck turned to the affected side.10,43,48 Passive cervi-

cal stretching can also be achieved during feeding120,136

by encouraging turning away from the shortened side topursue a bottle or breast, and when necessary, throughpositioning in car seats and infant carriers.16,48,61,86

Neck and Trunk Active ROM: Strengthening cer-vical and trunk muscles can be achieved through ac-tive ROM during positioning, handling, carrying theinfant,7,48,62,74,142 while feeding,120,136 and through exer-cises isolating the weaker muscles.7,48,62,142 Incorporatingrighting reactions in upright postures, rolling, side lying, orsitting has been used effectively during treatment and dailycare routines to strengthen muscles opposite of the affectedmuscles.43,48,142 The affected side of CMT is placed down-ward, elongating the tighter muscles and encouraging ac-tivity of the weaker, nonaffected side.7,48,62 Positioning theinfant in prone encourages bilateral neck flexor elongationand strengthens neck and spine extensors.2,71 Using visualand auditory tracking to elicit head turning in supportedsitting toward the affected muscle can strengthen cervicalrotation.7,10

Development of Symmetrical Movement: Develop-mental exercises should be incorporated into PT interven-tions and home programs to promote symmetrical move-ment in weight-bearing postures and to prevent the devel-opment of impaired movement patterns in prone, sitting,crawling, and walking.7,74,120

Environmental Adaptations: Adaptations to the in-fant’s environment can be incorporated into the home ex-ercise program. Alternating the infant’s position in the criband changing table encourages head turning in the de-sired direction.61,118,120 Adapting the car seat to promotesymmetry,48,129,136 minimizing the amount of time in acar seat and infant carrier,16,86 and placing toys on theaffected side for the infant to turn the head toward thetighter side48 have been recommended as part of homeprogramming, but not studied.

Parent/Caregiver Education: Parents and caregiversshould be educated about the importance of “tummy time”or prone play,1,12,128,131,133 positioning and handling to en-courage symmetry,1,61,62,71,120 minimizing the time spentin car seats and carriers to avoid plagiocephaly as a precur-sor to CMT,15,61,86 and alternating feedings to each side.136

These strategies should be integrated into the daily routinesand home programs to enhance adherence.

Parents and caregivers may be inclined to seek ad-vice from internet sites and support groups. These sourcescan provide an array of information, but the veracity ofinformation can vary, and the sites cannot tailor interven-tions to an individual child’s body structures and activitylimitations. Parents should be encouraged to review infor-mation with their primary pediatrician and/or PT regardingexercises or interventions they are considering. Identifica-tion of evidence-based, reputable internet resources would



TABL

E4:

PASS

IVE

STRE

TCH

ING

EVID

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TABL

E

FREQ

UEN

CY

WH

OW

HO

PER

DA

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ON

CIT

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ON

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ETIT

ION

OF

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No

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cces

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ry;2

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TABL

E4:

PASS

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STRE

TCH

ING

EVID

ENCE

TABL

E(C

onti

nued

)

FREQ

UEN

CY

WH

OW

HO

PER

DA

YO

RD

UR

ATI

ON

CIT

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ON

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RM

SIN

STR

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ETIT

ION

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LDS

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PRO

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0814

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ns

NA

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Ho

me

stre

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ises

Infa

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1059

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Pro

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Infa

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s.

assist both clinicians and families in keeping up with cur-rent and valid management approaches.

R. Research Recommendation 10. Researchers shouldconduct studies to identify intervention techniques anddosages, and link them to classifications of severity. Dosageshould address the technique and duration of stretches oractive movements, the repetitions within each treatmentsession, the frequency of treatment sessions per day, theoverall duration of care, and the frequency of clinic visits,including tapering schedules.

C. Action Statement 13: PROVIDE SUPPLEMEN-TAL INTERVENTION(S), AFTER APPRAISINGAPPROPRIATENESS FOR THE INFANT, TO AUG-MENT THE FIRST-CHOICE INTERVENTION.Physical therapists may add supplemental interventions,after evaluating their appropriateness for treating CMTor postural asymmetries, as adjuncts to the first-choiceintervention when the first-choice intervention has notadequately improved range or postural alignment, and/orwhen access to services is limited, and/or when the in-fant is unable to tolerate the intensity of the first-choiceintervention, and if the PT has the appropriate trainingto administer the intervention. (Evidence Quality: III;Recommendation Strength: Weak)

Action Statement ProfileAggregate Evidence Quality: Level II-IV studies with

small sample sizes, and case reports.Benefits: On an individual basis, combining supple-

mental interventions supported by weaker evidence withfirst-choice interventions:

� May be effective in addressing asymmetrical postures.� May accommodate an infant’s temperament or toler-

ance to treatment.� May improve ROM.� May avoid or minimize the need for future, more

invasive procedures.� May increase parent/caregiver ability to implement

home program.

Risk, Harm, and Cost:� Selected supplemental interventions (ie, microcur-

rent, kinesio tape, myokinetic stretching, or Tschar-nuter Akademie for Motor Organization [TAMO])should only be applied by clinicians skilled in thatspecific technique or modality.

� There may be an added burden to the par-ent(s)/caregivers to learn additional interventiontechniques.

� Some interventions may not be covered by insurance.� Some approaches may increase the cost of care.



Benefit–Harm Assessment: Preponderance of BenefitValue Judgments: The GDG recommends these ap-

proaches as supplements to more established interventionsdue to the limited number of studies and the small samplesizes in the available studies.

Intentional Vagueness: Whereas selected interven-tions are presented, there is no evidence as to when it isbest to add them to a plan of care.

Role of Parent/Caregiver or Patient Preferences: Par-ents may inquire about different interventions for the treat-ment of CMT.

Exclusions: None

Supporting Evidence and Clinical InterpretationThe following interventions are recommended as sup-

plements to the first-choice interventions described in Ac-tion Statement 12. They are presented in descending orderof evidence strength. Finally, there are some interventionsdescribed in the common press for which there are nostudies to support their effectiveness. Departures from theguideline should be documented in patient records at thetime the relevant clinical decisions are made.

Interventions With Limited Level II EvidenceMicrocurrent is a low-intensity alternating current

applied superficially at a level that is not perceived by thepatient. Thirty minutes of microcurrent applied directlyto the SCM of infants with CMT, 3 times per week for2 weeks, improved tilt angle (P < .01), neck rotation onthe affected side (P < .05), and yielded less crying duringtherapy (P < .05) when compared to a control group ofinfants with CMT who received traditional stretching andexercises.102 The sample groups were small (7 experimen-tal vs 8 control) and there was no long-term follow-up,but the average infant age was 7 months, and many hadalready been treated with stretching programs. This ap-proach should be further tested for reproducibility, butmay be appropriate to try after 2 to 3 months of interven-tion if changes are slowing.

Myokinetic stretching as applied by Chon et al112

consists of sustained 2-finger overpressure on the taut SCMmuscle; 60 repetitions were delivered over 30 minutes, 5times per week for an average of 1.7 months. Pre- andposttreatment measures of the SCM thickness in infantswith either the muscular torticollis or SCM mass typeswere made by ultrasound. Results describe significant re-ductions in SCM thickness (P < .05), improved cervicalrotation and head symmetry (P < .05), with retention at1-year follow-up by parent reports. The study had no con-trol group, and the average age of the sample was 50 days(range of 30-70). Additionally, the parents performed anunspecified home program of stretching and handling, so

it is not clear if the improvements are due to the treat-ment technique, or the intensity of treatment, and/or theage of the study subjects. Most studies demonstrate thatinfants less than 2 months of age will resolve with tra-ditional stretching approaches delivered at frequencies ofless than 5 days per week. Physical therapists may wantto try this approach if an infant is not progressing or isresisting passive stretching.

Interventions With Level III EvidenceKinesiological taping (KT) refers to the use of stretch-

able tape to support muscles, to provide sensory feedback,and, although suggested as an approach to assist with thetreatment of CMT,19,89 only 1 retrospective study couldbe found. Ohman143 reports the effect of KT on 28 infantsdiagnosed with CMT. The KT was applied with 3 differ-ent techniques, either muscle relaxation on the affectedside, muscle facilitation on the unaffected side, or a com-bination of both approaches. Muscle Function Scale scoreswere significantly higher (P < .001) when KT was appliedto the affected side for the purpose of muscle relaxation;however, these are preliminary results. Prospective con-trolled trials are needed to determine the true contributionof KT to the speed of CMT resolution.

Interventions With Level IV EvidenceThe TAMO approach promotes problem solving and

movement exploration during treatment, emphasizinglight touch and the infant’s responses to gravity and sup-port surfaces. A single case study of TAMO therapy de-scribes the treatment plan for an infant with CMT.74 Thesubject was a twin born prematurely, hospitalized in theNICU for 5.5 weeks, and who had additional hospitaliza-tions for other medical conditions during which he ap-peared to develop asymmetrical posturing. Despite homeprogramming of position changes, encouragement of ac-tive ROM, and use of prone positioning, SCM tightnessdeveloped and the infant was referred for treatment at6.5 months of age (4.5 months corrected age). The ap-plication of TAMO therapy was mixed with active ROMactivities, soft tissue mobilization, parent instruction foruse of home positioning to facilitate muscle lengtheningand carrying techniques that facilitate head righting op-posite of the tightness. While the changes across time arewell documented, it is not clear what contribution theTAMO approach provides separate from the positioningand handling approaches that others have shown to beeffective7,62 except for the noticeable absence of passivestretching. This approach may be a useful addition for PTswho have received postgraduate training in the TAMO ap-proach, particularly for infants who are resistant to stretch-ing. Prospective comparison studies are needed to deter-mine its true benefit.



Interventions With Level V EvidenceThe Tubular Orthosis for Torticollis (TOT) collar has

been described by Jacques in Karmel-Ross,19 by Emery2

and online (www.symmetric-designs.com) as a neck or-thotic designed to prevent movement toward and stimulateactive movement away from the tilted head position. Thecollars are used as an adjunct to conservative treatmentof infants with CMT aged 4 to 4.5 months who demon-strate adequate head control in supported sitting, and whodemonstrate more than 5 to 6◦ of head tilt.19,142 Althoughnoted as part of routine intervention in the treatment ofinfants with CMT who meet criteria for their use,2,71,89,142

there are no studies that isolate the outcomes of the TOTcollar compared to other interventions. Pilot data reportedin Karmel-Ross19 suggest that infants treated with the TOTcollar achieve 89.5/90◦ vertical head position as comparedto 84.8/90◦ for those who did not.

Soft foam collars have been described by Jacques19

and have been used postsurgery,68 postsurgery in con-junction with physical therapy,138,139,144-146 and postbo-tulinum toxin50 without specific rationales provided. Theymay be useful as passive support for the lengthened mus-cle, to protect incisions from curious hands, or to facilitateactive movement away from the previously shortened side.Binder et al7 describe the use of a soft felt and stockinet col-lar for infants presenting with less than 45◦ passive cervicalrotation and a constant tilt. In all cases, no studies havebeen found that isolate the effect of foam or soft collars onthe outcomes of conservative care.

Custom-fabricated cervical orthoses have beendescribed for postsurgical management of CMT inchildren145,147 and young adults.148 They reportedly pro-vide greater stabilization of the spine and less mobility thanthe softer foam collars or semirigid cervical orthoses149,150;however, their use with infants has not been reported inthe literature.

Interventions Without Evidence of EfficacyThe following approaches are reported in the litera-

ture, but either have been shown not to provide any ad-ditional benefit or have not been studied systematically.Additional approaches have been found on websites andin the lay press for which no peer-reviewed literature wasfound.

Manual therapy, when defined as cervical manipula-tion of the infant in supine, has been compared to stan-dard stretching alone in a small double-blind randomizedtrial (n = 32).151 Results indicate no differences betweenthe groups, with many confounding variables. The studywas underpowered; both groups received stretching andhome programs; the infants were young, ranging from 3to 6 months of age when stretching alone is known to be

effective; and selected measures were reported as unreli-able due to infant cooperation. The actual technique usedfor cervical manipulation was not well described in thestudy. Others have concluded that the use of cervical ma-nipulation in infants has no sufficient evidence of benefits,and may be associated with higher risks of apnea and pos-sible death.152,153 In weighing the potential risks againstthe benefits of other approaches, the GDG does not recom-mend cervical manipulation as an intervention for infantswith CMT.

The following interventions appear in print, on-line, in continuing education brochures and parentsupport groups for infants with torticollis and defor-mational plagiocephaly, but no peer-reviewed studieshave been found that describe the specific approachesor their effectiveness for resolving CMT: soft tissuemassage,19,71,74,112 craniosacral therapy,19 Total MotionRelease, and Feldenkrais.19 Referring physicians, thera-pists, and parents should be aware that these approacheshave not been systematically described or studied for CMT,and their clinical application, risks, and anticipated out-comes are not known. Due to a lack of studies, the GDGcannot recommend these approaches for management ofCMT at this time. Clinicians who choose to use these ap-proaches should document departures from the guidelinein patient records at the time the relevant clinical deci-sions are made, obtain consent to treat from parents thatacknowledges the lack of published evidence, and carefullydocument objective measures of change.

R. Research Recommendation 11. Researchers shouldconduct studies to describe and clarify the efficacy of allsupplementary interventions, including determinants fortheir choice, principles of application, dosage, and out-comes measures.

B. Action Statement 14: REFER FOR CONSUL-TATION WHEN OUTCOMES ARE NOT FULLYACHIEVED. Physical therapists who are treatinginfants with CMT or postural asymmetries shouldinitiate consultation with the primary pediatricianand/or specialists about alternative interventions whenthe infant is not progressing. These conditions mightinclude when asymmetries of the head, neck, and trunkare not resolving after 4 to 6 weeks of initial intensetreatment; after 6 months of treatment with only moder-ate resolution; or if the infant is older than 12 months oninitial examination and either facial asymmetry and/or a10 to 15◦ difference persists between the left and rightsides; or the infant is older than 7 months on initialexamination and a tight band or SCM mass is present;or if the side of torticollis changes. (Evidence Quality:II; Recommendation Strength: Moderate)



http://www.symmetric-designs.com


on cohort follow-up studies.Benefits:

� Alternative invasive interventions (eg, Botox orsurgery) can be considered to resolve the currentasymmetries and prevent further progression of de-formities and compensations.

� Provides the family/caregivers with alternative man-agement strategies to help resolve asymmetries.

Risk, Harm, and Cost: The consultations and possiblesubsequent interventions may add to the cost of care.

Benefit–Harm Assessment: Preponderance of BenefitValue Judgments: Collaborative and coordinated care

is in the best interest of the infant and family-centered care.Intentional Vagueness: NoneRole of Patient/Parent Preferences: The age of the

infant, the severity of the CMT, the rate of changes, theneeds of the family, the cooperation and developmentalneeds of the infant, and the available resources of the fam-ily/caregivers should help to determine the episode of carebefore an infant is referred back to the primary pediatricianfor consideration of alternative interventions.

Exclusions: None

Supporting Evidence and Clinical InterpretationThe literature supports a wide range of treatment du-

rations for conservative care; the question of when to referan infant who is not progressing has no clear answer. Theduration of care will vary depending on the age of diagno-sis and referral of the infant for services and the severitygrade. Infants who are referred within the first 3 monthswith a severity grade of 1 to 3 (Figure 2) will most likelynot require 6 months of conservative intervention, if theinterventions appropriately address the impairments andthere is adherence with home programming. Infants whopresent with severity grades of 4 to 7 will more likely re-quire the full 6 months of care, or more, depending onthe number of comorbidities. Factors that might extendtreatment duration include slow but progressive improve-ment in asymmetries, the initial age of treatment,49 thepresence or absence of a mass in the SCM, the amountof head tilt,2,9,18,49 the presence of facial asymmetry orplagiocephaly,49 parental preference for conservative care,inconsistent adherence by parents/caregivers, and infanthealth conditions that may interfere with CMT interven-tions. Throughout the episode of care, the PT should becollaborating with the primary pediatrician and the fam-ily, to make a judgment about when to consider alternativeapproaches. This decision should be based on the rate ofchanges, the persisting impairments, the age of the in-

fant, and the needs and values of the family. The literaturesupports that if infants have treatment initiated before 3months of age, 98% to 100% will respond to conserva-tive treatment within a 6-month period of time,2,8,10,11

although full resolution may require a longer duration.The determining factors should be documented measuresof progressive improvement, with referral triggered byplateaus at or after 6 months of consistent and intensiveintervention.

Invasive Procedures: There are 2 conditions forwhich a child may be referred for consideration of moreinvasive interventions. If after 6 months of conservativetreatment there is a lack of progress, or if the child firstbegins intervention after 1 year of age and presents withsignificant restrictions and/or an SCM mass, the PT shouldconsult with the primary pediatrician or referring physi-cian about alternative approaches; the 2 most commonbeing botulinum toxin injections and surgery. The follow-ing brief descriptions are provided for information, but arenot exhaustive reviews of these approaches. Clinicians andfamilies should discuss these options separately as alterna-tives when conservative care has not been successful.

Botulinum toxin is a neurotoxin that is postulatedto act on the tight SCM in 2 ways: as a neuromuscularblock that inhibits acetylcholine release, thus reducingstimulation of an already tight muscle, and as a neuro-toxin causing muscle atrophy and weakening that allowsfor easier stretching.113,154 Although it is not formally ap-proved for use with infants, it is approved for adults withcervical dystonia.154 Three relatively recent retrospectivestudies50,113,114 describe botulinum toxin as varying from25%114 to 74%113 to 93%50 effective for increasing ROMin infants with CMT. Adverse effects include pain andbruising,50 temporary dysphagia,113 and neck weakness,113

all of which are reported to resolve.Surgery is the more traditional alternative for treat-

ing recalcitrant CMT.138,139,155 It is beyond the scope ofthis CPG to describe the variety of surgical approaches,which generally fall into 3 categories: tendon lengthening,unipolar release of the distal SCM attachment, or bipo-lar release of both muscle attachments.156,157 Criteria thathave been used to determine the timing for surgery in-clude persisting limitations in cervical ROM more than15◦,9,137 progressing limitations,1 having an SCM massand being older than 12 months combined with lateage diagnosis,9 persistent visual head tilt,9,18,137 not re-sponding to treatment after 6 months,9,18 and reachingthe age of 1 year without resolution.137 The postopera-tive management of CMT is similar to preoperative man-agement, and can range from 4 to 6 weeks158 up to 4months159 to work on scar management, muscle strength,and ROM.



PHYSICAL THERAPY DISCHARGE AND FOLLOW-UPOF INFANTS WITH CMT

B. Action Statement 15: DOCUMENT OUTCOMESAND DISCHARGE INFANTS FROM PHYSICALTHERAPY WHEN CRITERIA ARE MET. Physicaltherapists should document outcome measures and dis-charge the infant diagnosed with CMT or asymmetricalposture from physical therapy services when the infanthas full passive ROM within 5◦ of the nonaffected side,symmetrical active movement patterns throughout thepassive range, age-appropriate motor development, novisible head tilt, and the parents/caregivers understandwhat to monitor as the child grows. (Evidence Quality:II-III; Recommendation Strength: Moderate)

Action Statement ProfileAggregate Evidence Quality: Levels II-III with evi-

dence from long-term follow-up studies and cohort andcase reports of unresolved CMT in infancy that later re-quire surgical intervention.

Benefits: Use of these criteria for discharge reasonablyensures that:

� The CMT has resolved within accepted ranges ofmeasurement error.

� There are no lingering secondary compensations ordevelopmental delays.

� The parents/caregivers know how to assess for re-gression as the infant grows and when to contacttheir primary pediatrician and/or the PT for reexam-ination.

� Discharge documentation reflects the expected out-comes of care, relative to the baseline measures takenat the initial examination.

Risk, Harm, and Cost: There is an unknown amountof risk that discharge from physical therapy services with5◦ residual asymmetry will progress to other anatomicalareas (cervical scoliosis, craniofacial) or return as the in-fant grows. There appears to be a slightly higher risk thangeneral prevalence of developmental coordination disor-der and attention-deficit hyperactivity disorder that is notassociated with the type or severity of the CMT,13 althoughmore studies are needed.

Benefit–Harm Assessment: Preponderance of BenefitValue Judgments: NoneIntentional Vagueness: NoneRole of Patient/Parent Preferences: Parents/

caregivers need to be educated about the importance ofscreening for asymmetries as the child grows and becomesmore active against gravity. They should be advised thatpreferential positioning is often observed during times offatigue or illness, and that reevaluation is warranted if itpersists.

Exclusions: None

Supporting Evidence and Clinical InterpretationAlthough the duration of intervention for the indi-

vidual infant will vary depending on the constellation offactors identified in Figure 2, the criteria for discharging aninfant from physical therapy services are based on normsfor infant growth and development,83 known risk of earlydelays,12-14 and the emerging evidence of possible long-term sequelae.5,13 Functionally, it is critical that the infantwho has achieved full PROM can actively use the avail-able range; consequently, physical therapy criteria for dis-charge should address developmental activity rather thanfocus solely on biomechanical measures of change.69 Per-sistent functional limitations or developmental delays, af-ter achievement of full PROM, are reasons to extend theepisode of care. Finally, these discharge criteria are com-mon across the literature and thus are in keeping withcurrent practice norms.140

B. Action Statement 16: PROVIDE A FOLLOW-UPSCREENING OF THE INFANT 3 to 12 MONTHSPOSTDISCHARGE. Physical therapists who treat infantswith CMT should examine positional preference, thestructural and movement symmetry of the neck, face andhead, trunk, hips, upper and lower extremities, and de-velopmental milestones, 3 to 12 months following dis-charge from physical therapy intervention or when thechild initiates walking. (Evidence Quality: II; Recommen-dation Strength: Moderate)


on longitudinal follow-up studies with moderately largesamples, reasonable follow-up periods, and reliable out-come measures.

Benefits:� Detection of postures and movement consistent with

relapsing CMT, particularly as infants initiate walk-ing and move against gravity.

� Detection of developmental delays.� Ability to restart home exercise programs if asymme-

try is identified.� Screening identifies causes of asymmetry, other than

CMT, if asymmetries reappear.

Risk, Harm, and Cost: A single follow-up visit willminimally add to the cost of care.

Benefit–Harm Assessment: Preponderance of BenefitValue Judgments: A single follow-up physical therapy

visit for infants with a history of CMT is consistent with theAPTA Guide to Physical Therapist Practice that describesthe roles of a PT to include prevention of recidivism andpreservation of optimal function.33

Intentional Vagueness: The recommended time atwhich follow-up is scheduled (3-12 months) is wide



because the age of the infant at discharge will vary. Foryounger infants, discharged between 4 to 6 months ofage, follow-up may need to occur sooner after dischargewhen the infants are initiating standing and walking. It isnot known how far out into early childhood that screen-ing should occur. Literature suggests that by 18 months,infants with delays at 10 months catch up with theirpeers14,63; however, longer follow-up suggests that someinfants are at greater risk for persistent neurodevelopmen-tal conditions such as developmental coordination disor-der and attention deficit hyperactivity, which may not be-come evident until the early school years.13

Role of Patient/Parent Preferences: Parents/caregivers may choose to forego a follow-up visit if itplaces undue burden on the family for travel, time, orfinances. Parents should be advised at discharge of thesmall chance that developmental conditions may becomeevident when the child enters school, and parents shouldbe educated to observe for persistent asymmetry.

Exclusions: None

Supporting Evidence and Clinical InterpretationThe long-term consequences of CMT are implied from

studies of older children and adults who require surgeriesfor correction of unresolved asymmetry5,53,156 and froma few long-term follow-up studies.10,13,14 Although theshort-term outcomes of conservative management are welldocumented, there is little direct evidence of the long-termeffectiveness of early physical therapy intervention, northe rate of recidivism following early intervention. Stud-ies report an “excellent” resolution of CMT as having lessthan 5◦ of passive rotation asymmetry with the oppositeside,17,18,52,80 and a “good” resolution with as much as10◦17,52 residual. It is not known whether the last 5 to 10◦

will resolve on its own, in whom it remains as a mild limita-tion, whether achieving passive ROM equates to full activeuse of the available ROM, and whether mild residual asym-metry influences normal development. The documentedpotential for increasing muscle fibrosis,111 developmen-tal delays,13,14 and hemisyndrome7 supports that a singlephysical therapy follow-up visit is prudent to determine if

the resolution of CMT achieved at an earlier age is main-tained as the infant continues to develop, and to assess forpotential developmental delays or biased limb use. Pedi-atricians should be cognizant of the risk for asymmetriesand/or motor delays during routine physical examinationsas infants with a history of CMT are followed through totheir teen years.

The length of time after discharge that a physical ther-apy follow-up should be conducted is supported by level IVevidence. Wei et al66 propose following infants until com-plete resolution, or a minimum of 12 months. Ultrasoundimages suggest that while clinical indicators of ROM mayimprove, they are not correlated with SCM fibrous changes,and these fibrous changes can continue until at least age3 years.111 Finally, the potential for developmental delaysmay not become evident clearly until early school age13;a reexamination when the child enters elementary schoolmay be warranted if a parent or teacher reports, or thechild presents with residual asymmetries, developmentaldelays, or preferential positioning.

R. Research Recommendation 12. Researchers shouldconduct studies to determine the most reasonable follow-up times after discharge from physical therapy based oninitial presentations, to establish the level of risk of devel-oping asymmetries following an episode of intervention.

R. Research Recommendation 13. Researchers shouldconduct studies to document parent/caregiver concernsand/or satisfaction with physical therapy intervention.

SummaryA scoping review of the literature resulted in 16

graded action statements with varying levels of obligationthat address referral, screening, examination and evalu-ation, prognosis, first-choice and supplementary physi-cal therapy interventions, interprofessional consultations,discharge, and follow-up, with suggestions for imple-mentation and compliance audits. Flow sheets for re-ferral paths and classification of CMT severity are pro-posed. Research recommendations are made for 13 practiceissues.



G U I D E L I N E I M P L E M E N T A T I O N R E C O M M E N D A T I O N S

A growing body of literature exists on the uptake ofevidence into practice. The following suggestions are pro-vided as possible strategies for clinicians to implement theaction statements of this CPG, but are not an exhaustivereview. Many variables affect the successful translation ofevidence into practice; clinicians will need to assess theirown practice structures, cultures, and clinical skills to de-termine how to best implement the action statements asindividuals and how to facilitate implementation by others.

Strategies for Individual Implementation� Keep a copy of the CMT CPG in a location that is

easy to reference.� Compare items in the recommended examination list

to determine what should be added to an examinationto increase adherence.

� Adapt examination forms to include a place to docu-ment each of the recommended measures.

� Seek training in the use of the recommendedstandardized measures and/or interventionapproaches.160

� Build relationships with referral sources to encourageearly referral of infants.

� Measure individual service outcomes of care (eg, pa-tient effect across the ICF domains, costs, and par-ent/caregiver satisfaction).161,162

Strategies for Facilitating CPG Implementation inOther Clinicians

� Recognize that adoption of the recommendations byothers may require time for learning about the CMTCPG content, developing a positive attitude towardadopting the action statements, comparing what isalready done with the recommended actions, tryingselected changes in practice to determine their ef-ficacy, and finally, routine integration of the testedchanges.161,163

� Identify early adopting clinicians as opinion leadersto introduce the guideline via journal clubs or staffpresentations.161,163

� Identify gaps in knowledge and skills following pre-sentation of content to determine needs of staff foradopting recommendations.163

� Use documentation templates to facilitate standard-ized collection and implementation of the recom-mended measures and actions.164,165

� Institute quality assurance processes to monitor theroutine collection of recommended data and imple-mentation of recommendations, and to identify bar-riers to complete collection.161,166

� Measure structural outcomes (eg, dates of refer-ral, equipment availability), process outcomes (eg,use of tests and measures, breadth of plan ofcare), and service outcomes (eg, patient effectacross the ICF domains, costs, and parent/caregiversatisfaction).161,162

Plan for Revision: The GDG recommends that theCPG be updated in 5 years, as the body of evidenceexpands.23



S U M M A R Y O F R E S E A R C H R E C O M M E N D A T I O N S

R. Research Recommendation 1: Researchers should con-duct studies to determine whether routine screening atbirth increases the rate of CMT identification and/or in-creases false positives.

R. Research Recommendation 2: Researchers should con-duct studies to clarify the predictive baseline measuresand characteristics of infants who benefit from immediatefollow-up, and compare the cost–benefit of early physicaltherapy intervention and education to parental instructionand monitoring by physicians. Longitudinal studies of in-fants with CMT should clarify how the timing of referraland initiation of intervention affect changes in body struc-ture, function, and overall costs of care.

R. Research Recommendation 3: Researchers should con-duct studies to identify the precision of screening proce-dures specific to CMT.

R. Research Recommendation 4: Researchers should con-duct studies to determine who would benefit from imaging,at what time in the management of CMT images are useful,and how images affect the plan of care.

R. Research Recommendation 5: Researchers should con-duct studies to develop a reliable, valid, and time-efficientmethod of measuring infant cervical ROM and determinenormative data for cervical passive ROM.

R. Research Recommendation 6: Researchers should con-duct studies to:

a. Determine the sensitivity and specificity of theMuscle Function Scale to differentiate infants withclinically significant limitations from infants whoare typically developing.

b. Establish a clinically practical, objective method ofmeasuring active ROM in infants 0 to 3 months andinfants older than 3 months to assess baselines andchange over time.

c. Determine what, if any, correlation between activeand passive ROM should be used for discharge cri-teria.

R. Research Recommendation 7: Researchers should con-duct studies to describe and differentiate signs of discom-fort from the types of pain reactions typically observed ininfants with CMT during specific testing or interventions,as well as determine the validity of the FLACC in ratingtrue pain reactions during CMT examinations or interven-tions.

R. Research Recommendation 8: Researchers should con-duct studies to determine a reliable, valid, and clinicallypractical method of measuring lateral flexion, and deter-mine the relationship between the severity of lateral flexionand the severity grades.

R. Research Recommendation 9: Researchers should con-duct studies to identify the best developmental screeningtests to use for infants with suspected or diagnosed CMT,from birth through 12 months. This research would enablestandardization of measures to document outcomes acrossstudies.

R. Research Recommendation 10: Researchers shouldconduct studies to define home exercise program inter-vention dosages and link them to classifications of severity.Dosage should address the type and duration of stretchesor active movements, the repetitions within each treatmentsession, the frequency of treatment sessions per day, theoverall duration of care, and the frequency of clinic visits,including tapering schedules.

R. Research Recommendation 11: Researchers shouldconduct studies to describe and clarify the efficacy of allsupplementary interventions, including determinants fortheir choice, principles of application, dosage, and out-comes measures.

R. Research Recommendation 12: Researchers shouldconduct studies to determine the most reasonable follow-up times after discharge from physical therapy servicesbased on initial presentations, to establish the level of riskof developing asymmetries following an episode of physi-cal therapy.

R. Research Recommendation 13: Researchers shouldconduct studies to document parent/caregiver concerns orsatisfaction with physical therapy intervention.

ACKNOWLEDGMENTS

This CPG is the product of many people’s work andsupport, particularly the support provided by the Sectionon Pediatrics of the American Physical Therapy Associa-tion. From the initial period of conceptualization througheach phase of development, the authors have benefittedfrom the work and advice of clinicians, methodologists,and patients with whom we work. We formally acknowl-edge and express appreciation to the many contributorsalong the way.

Literature search and abstract review: Karen GageBensley, PT, DPT, PCS; Catie Christensen, PT, DPT; StacieLerro, PT, DPT, PCS; Barbara Sargent, PT, PhD, PCS; Kath-leen Kelly, PT, PhD; Magdalena Oledzka, PT, MBA, PCS;Melanie O’Connell, PT, PCS; Allison Yocum, PT, DSc, PCS

Literature review, appraiser reliability training, andcritical appraisal ratings: Karen Bensley, PT, DPT, PCS;Carol Burch, PT, DPT, Med; Yu-Ping Chen, PT, ScD; CatieChristensen, PT, DPT; Hsiang-han Huang, OT, ScD; Sta-cie Lerro, PT, DPT, PCS; Barbara Sargent, PT, PhD, PCS;Kathleen Kelly, PT, PhD; Caitlin McSpadden, PT; AllisonYocum, PT, DSc, PCS



Action statement generation and literature summa-rization: Richard Shiffman, MD (BRIDGE-Wiz developer)

External AGREE II raters: Eileen G. Fowler, PT, PhD;Christine M. McDonough, PT, PhD

Special acknowledgments: Pam Corley, Reference Li-brarian, USC; and Christina Germinario, PT, DPT, for cler-ical assistance during the early stages of literature review.

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Appendix 1: ICF AND ICD 10 CODES

ICF CODES CMT PRESENTATION

Impairments of body functions and structures

B7108 Mobility of joint functions, other specified Cervical PROM and AROM

B7300 Power of isolated muscles and muscle groups Strength of lateral neck flexion and cervical rotation; strengthof neck and back extensors in prone; symmetrical strength ofSCM in pull to sit

B7350 Tone of isolated muscles and muscle groups Hyper- or hypotonia; spasm

B7600 Control of simple voluntary movements Active visual pursuit toward the shortened side; symmetricalmovements of trunk; UE and LEs in developmental positions

S7103 Joints of head and neck region Cervical PROM and AROM

S7104 Muscles of head and neck region Presence of an SCM mass

S7108 Structure of head and neck region, otherspecified

Facial and skull symmetry

S7401/ S5001 Hip joint Hip dysplasia

Activity limitations

D110 Watching TIMP, AIMS, AROM, ocular torticollis

D440 Fine hand use Hands to midline; hemisyndrome

D445 Hand and arm use Hands to midline; hemisyndrome; AIMS, AROM

Participation restrictions

D7600 Parent–child relationships Parent comfort and knowledge with positioning and homeprogramming

D7601 Child–parent relationships Infant engagement with parent during feeding and play

D920 Recreation and leisure AIMS, attention to toys

ICD 10/9 CodesThese codes are offered for reference and are not in-

tended to be directional for billing purposes.754.0 Plagiocephaly754.1 Congenital musculoskeletal deformities of

sternocleidomastoid muscle723.5 Torticollis, unspecifiedQ67.0 Facial asymmetryQ67.3 PlagiocephalyQ68.0 Congenital deformity of sternocleidomastoid

muscleQ79.8 Other congenital malformations of the

musculoskeletal systemP15.2 Sternomastoid injury due to birth injuryM43.6 TorticollisAbbreviations: AIMS, Alberta Infant Motor Scale;

AROM, active range of motion; CMT, Congenital MuscularTorticollis; ICD, International Classification of Diseases;ICF, International Classification of Functioning, Disabilityand Health; LEs, lower extremities; PROM, passive rangeof motion; SCM, sternocleidomastoid; TIMP, Test of InfantMotor Performance; UE, upper extremity.

Appendix 2: Operational DefinitionsBrachycephaly: Flattening of the entire posterior sur-

face of the head.Cervical rotation: Movement in the transverse plane,

such that the chin turns toward or past the ipsilateralshoulder.

Congenital muscular torticollis: Congenital muscu-lar torticollis (CMT) is a common pediatric orthopediccondition, described as an idiopathic postural deformityof the neck evident at birth or shortly thereafter. CMT istypically characterized by a head tilt to 1 side and the neckrotated to the opposite side, due to unilateral shortening orfibrosis of the sternocleidomastoid muscle. CMT may beaccompanied by cranial deformation or hip dysplasia, andless frequently, atypically present as a head tilt and necktwisting to the same side.9,44,167 CMT has been associatedwith hip dysplasia,4 brachial plexus injury,39-41 distal ex-tremity deformities, early developmental delay,14,39 persis-tent developmental delays,13 facial asymmetry, which mayaffect function and cosmesis,6 and temporal–mandibularjoint dysfunction.54



Lateral cervical flexion, side bending, or head tilt:Movement in the coronal plane, such that the infant’s earapproaches the ipsilateral shoulder.

Plagiocephaly: Cranial asymmetry with flattening of1 side of the head.121

Sternocleidomastoid mass (synonymous with fibro-matosis colli, tumor, pseudotumor, or node): A conditionin which the sternocleidomastoid muscle is enlarged dueto fibrosing of muscle cells with identifiable histologi-cal changes.110 This condition is referred to as a “mass”throughout this document.



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