© 2008 ronald g. barr, mdcm, frcpc robert wood johnson foundation center for health policy at unm...

© 2008 Ronald G. Barr, MDCM, FRCPC

Robert Wood Johnson FoundationCenter for Health Policy at UNM

FALL 2008 LECTURE SERIESInter-/Trans-Disciplinary Research on Health: What? How? Why?

“Where the Rubber Hits the Road:How Science Can Be Translated into Policy for

Prevention of Shaken Baby Syndrome”

Ronald Barr, MDCM, FRCP Canada Research Chair in Community Mental Health and

Professor of PediatricsUniversity of British Columbia

Co-Sponsors: College of Education; Center for Development and Disability, Health Sciences Center


Note on this slide set

• This is an abbreviated set of slides from the presentation. A number of slides could not be reproduced because of copyright and distribution rights limitations.

• This may result in some of the slides seeming to be “discontinuous” from one another.

• Note that these are copyrighted and for information only, and may not be distributed for any reason.


Where the rubber hits the Where the rubber hits the road: road: How science can be How science can be translated into policy for translated into policy for

prevention of Shaken Baby prevention of Shaken Baby SyndromeSyndrome

RWJ Foundation Center for Health PolicyUniversity of New Mexico

November 13, 2008

Ronald G. Barr, MA, MDCM, FRCPCDirector, Centre for Community Child Health Research, CFRI

Canada Research Chair in Community Child Health Research

Vancouver, BC, Canada


Disciplines/Methodologies Necessary Disciplines/Methodologies Necessary for SBS Prevention Programfor SBS Prevention Program

• Pediatrics• Primary Care Practice• Epidemiology• Clinical Research

Design• Child Developmental

Psychology• Statistics• Gastroenterology• Nursing• Neuroradiology

• Neuroscience• Anthropology, Cultural

and Biological• Nonlinear Dynamic

Systems Theory• Developmental

Psychobiology• Child Abuse• Injury Prevention• Community-based

Prevention


The Science:The Science:Four Lines of EvidenceFour Lines of Evidence

Shaking Your Baby

Is Dangerous

Crying

And Colic

Is NormalIs Normal

The most common stimulus

Prevention?


The ShakingThe ShakingThe ShakingThe Shaking

• Weak Neck Muscles• Normal Large Head

to Body ratio• Violent, sustained

shaking

Guthkelch (1971)Guthkelch (1971)

demonstrated the dangersdemonstrated the dangers

of shakingof shaking


Intracranial “Cascade” Intracranial “Cascade” from Shakingfrom Shaking


Mechanical Stresses During Mechanical Stresses During Shaking & Eye LesionsShaking & Eye Lesions


Traumatic RetinoschisisTraumatic RetinoschisisTraumatic RetinoschisisTraumatic Retinoschisis


Outcomes of Outcomes of Hospitalized CasesHospitalized Cases

• 20-35% die• Of the survivors, 65-80% have

significant longterm neurological and developmental abnormalities

• 40% of survivors are blind


Challenges:Challenges:Determining Determining occurrenceoccurrence

• Cases that never come to clinical attention?• “Missed” cases (~30% [Jenny et al 1999]

and “repetitive” cases (~30-70% [many authors]) imply that some children are shaken and never come to clinical attention

• The Gabbi and Michele story


Why crying in Why crying in normalnormal infants infants might be relevant to Shaken might be relevant to Shaken

Baby Syndrome?Baby Syndrome?


Four Lines of EvidenceFour Lines of Evidence

Shaking Your Baby

Is Dangerous

Crying

And Colic

Is NormalIs Normal


Different Lines of Evidence:Different Lines of Evidence:The Normalcy of CryingThe Normalcy of Crying


What is colic?What is colic? Defining features Defining features

(Gormally & Barr, 1997)(Gormally & Barr, 1997)

1. Age-dependent crying patterns (peak during 2nd month).

2. Associated behaviors (prolonged cry bouts, unsoothability, “pain facies”)

3. “Paroxysmal” (unpredictable)


Wessel’s “Rule of 3’s”Wessel’s “Rule of 3’s”

An infant has colic when s/he cries: > 3 hours/day > 3 days/week > 3 weeks

Wessel et al, “Paroxysmal fussing in infancy, sometimes called ‘colic.’” Pediatrics, 1954


Typical Assumption:Typical Assumption:Colic is an abnormality,Colic is an abnormality,or “something wrong” or “something wrong”

with the infant with the infant


Current Evidence-based Current Evidence-based Assumption:Assumption:

Colic and early increased Colic and early increased crying are crying are normalnormal,,

and there is and there is nothing nothing wrongwrong with the infant with the infant


What is colic?What is colic? Defining features Defining features

(Gormally & Barr, 1997)(Gormally & Barr, 1997)

1. Age-dependent crying patterns (peak during 2nd month).

2. Associated behaviors (prolonged cry bouts, unsoothability, “pain facies”)

3. “Paroxysmal” (unpredictable)


The “crying curve”The “crying curve”(Brazelton, 1962)(Brazelton, 1962)

Large differences

from infant to infant


““Peak Pattern” of Peak Pattern” of Early Crying BehaviorEarly Crying Behavior

Hunziker & Barr, Pediatrics 1986


Caregiving ContextsCaregiving Contexts

!Kung San Western Contact Constant Intermittent

Carry Constant Response to cry

Feeding “Continuous” “Pulse”

Posture Upright Supine

Responsivity Universal Occ. Non-response


Hourly Hourly Cry/Fret DurationCry/Fret Duration in !Kung San Infantsin !Kung San Infants

Barr, Konner et al DMCN 1991

Large differences

from infant to infant


““Distress Curves” have been Distress Curves” have been found in all non-human found in all non-human mammalian (i.e. breast mammalian (i.e. breast

feeding) species investigated.feeding) species investigated.

• Guinea pig pups (Pettyjohn, 1979)

• Infant rat pups (Hofer et al, 1999)

• Chimpanzees (Bard, 2000)

• Free-living Rhesus macaques (Barr et al, 2005)


Reasons for the Reasons for the Frustrating Properties of Frustrating Properties of

Colic and Early CryingColic and Early Crying

1. The crying curve

2.2. The unsoothable crying The unsoothable crying boutsbouts


Unsoothable bouts Unsoothable bouts are are unsoothable!unsoothable!


Unsoothable Crying BoutsUnsoothable Crying Boutsin London, Copenhagen, and with a in London, Copenhagen, and with a

“proximal” form of care“proximal” form of careInfants with Bouts of Unsoothable Crying

0%

5%

10%

15%

20%

25%

30%

35%

40%

45%

50%

10 days 5 weeks 12 weeks

Age of Infants

Per

cen

tag

e o

f In

fan

ts

London Community

Copenhagen Community

Proximal Care

St James-Roberts, I., Alvarez, M., Csipke, E., Abramsky, T., Goodwin, J., Sorgenfrei, E. Infant crying and sleeping in London, Copenhagen, and when parents adopt a 'proximal' form of care. Pediatrics,2006.

© 2008 Ronald G. Barr, MDCM, FRCPCThe Period of PURPLE Crying is a registered trademark and all content is copyright protected. All rights reserved, Ronald G. Barr, MDCM and the National Center on Shaken Baby Syndrome (2004-2008)

In SummaryIn Summary

““Colic”Colic” is a manifestation of normal is a manifestation of normal behavioral developmentbehavioral development

““Colic”Colic” is the is the upper endupper end of a of a continuumcontinuum of crying behavior in normal infants of crying behavior in normal infants (like height: some infants are taller and (like height: some infants are taller and some are shorter)some are shorter)

““Colic”Colic” is not an is not an indicationindication of diseaseof disease in in the infant.the infant.


Clinical ImplicationsClinical Implications

1 2 3 4 5

Wessel’s criteria

“False positive” effective

“False negative” ineffective


Clinical ImplicationsClinical Implications

• If you do not take the curve into account, therapeutic interventions can be misinterpreted as effective when the are not effective, or ineffective when they are effective

• ALL infants experience the curve, and “organic causes” only move the infant “up” within the range of crying


Why normal infant Why normal infant crying is a “window crying is a “window of opportunity” to of opportunity” to

prevent SBSprevent SBS


““John’s story” illustrates…John’s story” illustrates…

• Age of baby, 7 weeks• Accumulated frustration over time• Wouldn’t stop crying as immediate stimulus• Took out his “anger and frustration”• “…and he stopped crying” – the positive

feedback cycle• Confession of shaking• No associated physical contact or trauma


Questionnaire Study of Questionnaire Study of Soothing Methods in Soothing Methods in

HollandHollandvan der Wal et al, Arch Dis Child, 1998van der Wal et al, Arch Dis Child, 1998

Techniques used to soothe infants:

1. Smother 2%2. Slap 3%

3.3. ShakeShake 5%5%


Runyan.Runyan. The challenges of assessing the The challenges of assessing the incidence of inflicted traumatic brain incidence of inflicted traumatic brain

injury: A world perspective.injury: A world perspective.Amer J Prev Med 2008;34 (4S)

“The impact of these private acts must be further studied as there may be other long-lasting and serious intracranial impacts that have not been characterized.”


Crying as a Stimulus for Shaken Crying as a Stimulus for Shaken Baby SyndromeBaby Syndrome

Danger of Danger of shaking shaking

an infantan infant

Normalcy of Normalcy of Increased Increased

Inconsolable Inconsolable CryingCrying

Crying as a Crying as a stimulus stimulus

to shakingto shaking

Early crying Early crying is the most is the most

commoncommon stimulus stimulus

for Shaken for Shaken Baby Baby

SyndromeSyndrome


The “crying curve” The “crying curve” (Brazelton, Pediatrics, 1962)(Brazelton, Pediatrics, 1962)Hypothesis:Hypothesis: IF crying was a

significant stimulus for sbs, THEN the pattern of age-

related incidence of sbs should be similar to the age-related

properties of the crying curve


Age-specific incidence of Age-specific incidence of hospitalizedhospitalized cases of SBS cases of SBS

(Barr, Trent et al Child Abuse & Neglect 2006)(Barr, Trent et al Child Abuse & Neglect 2006)

0

5

10

15

20

25

30

35

40

45

50

0 8 16 24 32 40 48 56 64 72 80

Age (weeks)

No

. of

ca

se

s


Age-specific Incidence ofAge-specific Incidence ofPublicly-reportedPublicly-reported Cases of SBS Cases of SBS

(Lee, Barr et al JDBP 2007)(Lee, Barr et al JDBP 2007)

0

20

40

60

80

100

120

0-4 5-8 9-12 13-16 17-20 21-24 25-28 29-32 33-36 37-40 41-44 45-48 49-52 53-56 57-60 61-64 65-68 69-72 73-76 77-80

Baby's Age (weeks)

No

. o

f C

ases

Crying Stimuli (n=166) All Stimuli (n=591)


Curves of Early Crying Curves of Early Crying and SBS Incidenceand SBS Incidence

1 2 3 4 5Months of Age

LagO

nset

Cry Curve

SBS Curve


Prevention:Prevention:The Period of PURPLE CryingThe Period of PURPLE Crying

Dangers Dangers of of

ShakingShaking

Normalcy Normalcy of Early of Early CryingCrying

Crying as Crying as Stimulus to Stimulus to

SBSSBS

PreventionPrevention??


Normal Crying as aNormal Crying as a“window of “window of

opportunity”opportunity”to prevent SBSto prevent SBS

• An opportunity to teach caregivers and all members of society about the normality of early increased normality of early increased cryingcrying;

• An opportunity to see SBS as the only only negative clinical consequencenegative clinical consequence for infants of early increased crying;

• Tells us whenwhen the teaching must occur to be effective.


The Period of PURPLE CryingThe Period of PURPLE Crying

Dangers Dangers of of

ShakingShaking

Normalcy Normalcy of Early of Early CryingCrying

Crying as Crying as Stimulus to Stimulus to

SBSSBS

Prevention: Prevention: Period of Period of PURPLE PURPLE CryingCrying


The properties of early The properties of early crying are extremely crying are extremely

frustrating to caregiversfrustrating to caregivers


The Period of PURPLE The Period of PURPLE CryingCrying

PP Peak of CryingPeak of Crying

UU UnexpectedUnexpected

R R Resists Resists SoothingSoothing

PP Pain-like FacePain-like Face

LL Long LastingLong Lasting

EE EveningEvening


Pathways to ShakingPathways to Shaking

Crying

Threshold

Frustration ……….Anger

Shaking


The Pathways to Prevention:The Pathways to Prevention:

AppropriatenessAppropriatenessof Adviceof Advice

Crying

Threshold


Shaking

Appropriate Accurate Advice


The Importance of The Importance of Appropriate Information, Appropriate Information, Reassurance and AdviceReassurance and Advice


““If you were a good If you were a good mother, you would…”mother, you would…”

• Listen carefully to the cry and Listen carefully to the cry and learn to read what the cause of learn to read what the cause of the crying is so that you address the crying is so that you address the needs of your baby…the needs of your baby…


““If you were a good If you were a good mother, you would…”mother, you would…”

• Listen carefully to the cry and learn to read what the cause of the crying is so that you address the needs of your baby…

• Learn the right way to soothe Learn the right way to soothe your infant so that s/he can be your infant so that s/he can be calmed and not cry…calmed and not cry…


“…“…calming your baby the right calming your baby the right way” as a preventionway” as a prevention

• Fussing and crying may be reduced in response to care giving practice, but there is no evidence that unsoothable crying bouts are.


Tummi Time “Proven Tummi Time “Proven Remedy for Colic”Remedy for Colic”


Different Starting Different Starting AssumptionsAssumptions

Period of PURPLE CryingPeriod of PURPLE Crying:: In the first three to five months of life, there is a normal period of

increased crying, somesome of which is inconsolable crying that is notnot amenable to changes in care

giving techniques

“…“…calm your baby the right way”:calm your baby the right way”: There are ways that will always calm your baby if only you do them the right way (and there is no such thing

as inconsolable crying)


The Pathways to Shaking:The Pathways to Shaking:

Wrong Advice?Wrong Advice?

Crying

Threshold


Shaking

InaccurateInappropriate

WrongAdvice

•Must not result in Must not result in more harm than goodmore harm than good


Period of Period of PURPLEPURPLE Crying Program: Crying Program: Achieving “Universal coverage” Achieving “Universal coverage”

• Educational, and attractiveattractive to parents of newborns on the first day of life

• Clear, memorable, salient, meaningful, positivepositive message

• Grade 3 level language• Multicultural• Valuable for all parents• Acceptable to Public Health Nurses

• no bottles, blankets, bumpers, etc.)

• Economical • Each parent receives a copyEach parent receives a copy to review

and to share with othersshare with others


Do education programs Do education programs change knowledge and change knowledge and

behavior?behavior?


The “Parents Helping The “Parents Helping Infants”Infants”StudiesStudies

• Randomized controlled trials in community settings in Vancouver and Seattle

Delivery systems: • Public health nurse home

visitors• Pediatric Offices• Prenatal Classes• On Maternity Wards


Testing the hypothesis that Testing the hypothesis that education materials can change education materials can change

knowledge and behaviorknowledge and behavior

RR

Infant safety intervention

Period of PURPLE Crying Intervention


Testing the hypothesis thatTesting the hypothesis that education materials can change education materials can change

knowledge and behaviorknowledge and behavior

BirthHome visit

Intervention at ~2 weeks

4-day diary at 5 weeks

of age

Knowledge and Behavior

Questionnaire at 2 months


Implementation Implementation HypothesisHypothesis

To make a long term sustained reduction in the number of cases of shaken baby syndrome, there will need to be a cultural change in the

way society understands(1) the meaning of increased crying in

early infancy, and(2) the danger of shaking as a response

to the frustration with that crying.


Preventing abusive head trauma Preventing abusive head trauma among infants and young children:among infants and young children:A hospital-based, parent education A hospital-based, parent education

program.program.Dias et al Pediatrics 2005: 115, 470-477Dias et al Pediatrics 2005: 115, 470-477

• Hospital-based parent education program• Intervention:

• Nurse provision of AAP leaflet, video (Portrait of Promise), commitment statement, posters on wards

• Follow-up telephone interviews at 7 months


Dias Dias modelmodel

ProcessProcess ContentContent

Process elements (7):

Teachable moment

Nurse delivery

PURPLEPURPLE and the Dias model and the Dias model


Dias Dias modelmodel

ProcessProcessPeriod of

PURPLE Crying

Materials

Process elements (7):

Teachable moment

Nurse delivery

PURPLEPURPLE Program Materials Program Materials with the Dias Modelwith the Dias Model

Dose 1 benefits from and builds on

the Dias process

© 2008 Ronald G. Barr, MDCM, FRCPCThe Period of PURPLE Crying is a registered trademark and all content is copyright protected. All rights reserved, Ronald G. Barr, MDCM and the National Center on Shaken Baby Syndrome (2004-2008)

““Three Dose” ProgramThree Dose” Program Dose 1:Dose 1: Maternity unitsMaternity units

Dose 2:Dose 2: Public Health, Family Public Health, Family Physicians, Nurse PractitionersPhysicians, Nurse Practitioners

Dose 3:Dose 3: Public Education CampaignPublic Education Campaign

Reinforcement and Reinforcement and Enhancements:Enhancements:

Emergency personnel, pediatrics, Emergency personnel, pediatrics, physicians, social work, community physicians, social work, community programs and all health professionals programs and all health professionals who work with parents of infantswho work with parents of infants


What do we know about What do we know about Shaken Baby Syndrome?Shaken Baby Syndrome?

• SBS has already been shown to:• be the most severemost severe form of child abuse,• be a preventablepreventable form of child abuse

(25-47% reduction),• have a clear stimulusclear stimulus (crying) and riskrisk

behaviorbehavior (shaking) leading to the abuse;

• have educational materials with demonstrated efficacydemonstrated efficacy in changing relevant knowledge and behavior (Period of PURPLE Crying).


The Pyramid of PreventionThe Pyramid of Prevention

All parents of new infantsAll parents of new infants

Parents of infants with ‘colic’ (20%)Parents of infants with ‘colic’ (20%)

Health care providersHealth care providers

Parents lacking confidence (10%)Parents lacking confidence (10%)

Neglected infantsNeglected infants

Physically abused & shaken infantsPhysically abused & shaken infants

Homicide victimsHomicide victims

General publicGeneral public

Temporary care givers/ family membersTemporary care givers/ family members

© 2008 ronald g. barr, mdcm, frcpc robert wood johnson foundation center for health policy at unm...

Documents

health sciences centernote

featuresgormally barr

cfricanada research

lines of evidenceshaking

agedependent crying

frcp canada research

early increased crying

san infant