enca 2016 - genoa - carine wouters

Transfer and Transition of adolescents and young adults with juvenile idiopathic arthritis

in Belgium

Carine Wouters, Pediatric Immune-inflammatory Diseases, Leuven, Belgium ENCA at PRES congress, GenoA, September 2016

Agenda

• Background: transfer and transition

• Exploration of the field

• Design of a transition program

• Evaluation of clinical impact

JIA in adolescence

physical symptoms• e.g. chronic pain, fatigue, limited

joints

medical regimen• e.g. taking medication,

physiotherapy

psychosocial problems• e.g. risk for restriction in social

activities

parental care• e.g. balance autonomy/protection

JIA impact

identity development

changing social landscape

changing familial

relationships

changing peer relationships

emerging individuation

emerging autonomy

Adolescence: developmental tasks

Terminology

• Transition : the process by which adolescents and young adults with a chronic childhood illness are prepared to take charge of their lives and their health in adulthood.

• Transfer: defines an event through which adolescents and young adults with chronic physical and medical conditions move their care from a pediatric to an adult health care environment.

Transition and Transfer

paediatrics adult health care

TRANSITIONPROGRAMME

personal development

role of parents

transfer

While, A., 2004

transition

Aim of a transition programme

• Prepare young adults for increased responsibility for their health and self-care

• Provide uninterrupted health care that is patient-centered, age- and developmentally appropriate, flexible and comprehensive

• Gather in-depth knowledge about the disease and drugs

• Evolve to active (instead of passive) participation in decision taking

Exploration of the field

feasibilitycomponents

guidelineseffectiveness intervention

replication other

settingsconsensus statements

research TP

exploration

Exploration: research questions

RQ 1: What is the current attitude of rheumatology practitioners in Europe on transfer and transition?

RQ 2: In which setting are patients with JIA followed-up after leaving paediatric rheumatology?

RQ 3: What does it mean to grow up with JIA?

RQ 4: What are the experiences and expectations of young adults with JIA concerning the transfer from paediatrics to adult-focused care?

RQ 1: Attitude of rheumatology practitioners in Europe on transfer and transition?

n = 133

QUARTT: Questionnaire about Attitudes of Rheumatology Practitioners toward Transfer and Transition

Valencia

Paediatric Rheumatology European Society


transfer

transition

RQ 1: Attitude of rheumatology practitioners in Europe towards Transfer:

• adult rheumatologist (87%)destinations of care

• paediatric rheumatologist• reaching certain ageinitiators for transfer

• transfer meeting with the patient• referral letter• transfer medical file

transfer communication tools


transfer

transition

RQ 1: Attitude of rheumatology practitioners in Europe towards Transition:

participants in transition

transition barriers

patient education

transition components

• paediatric rheumatologist• adult rheumatologist• parents• nurse specialist

• social worker• physiotherapist• ophthalmologist

• medication and side effects• general health issues

• sexual issues and pregnancy• education & jobs

• promotion independence• dealing with fatigue

• medication adherence• meeting peers

• limited time• unavailability of a transition coordinator

paediatricsJIA patients followed at

pediatric rheumatology clinic (n = 44)

RQ 2: Adolescents with JIA, who cares after the age of 16 ?

paediatrics

FU rheumatologist

FU general practitioner

No medical FU

JIA patients followed at pediatric rheumatology clinic

(n = 44)

RQ 2: Adolescents with JIA, who cares after the age of 16?

• Clinical disease activity• General health status• Function and quality of life

RQ 2: Adolescents with JIA, who cares after the age of 16 ?

paediatrics

FU rheumatologist

FU general practitioner

No medical FU

JIA patients followed at pediatric rheumatology clinic

(n = 44)

• on medication for JIA• worse general health • more limitations and more pain• worse quality of life

• many in remission• 20% with mild disability • 40% with mild/moderate pain

57%

13%

30%

Adolescents with persistent disease and functional limitations tend to remain in

rheumatology circuit

JIA is not necessarily controlled for all patients leaving medical care


transfer

55

n = 15

growing up with JIA

o qualitative study using in-depth interviewso young adults with persistent severe JIAo in FU at adult rheumatology department in Leuven



Physical impact• functional limitations• pain• fatigue

Medication• adherence difficulties• side effects

Relationships & Family• role as family member• pregnancy, raising children

Friends• friends who understand• making social contact can be difficult

Future• evolution of disease• what to expect?

RQ 4: Experiences and expectations of transfer from paediatric to adult care?

Good preparation

Voice in parental involvement

To an adapted setting for adolescents

Young adults with severe JIA followed at Leuven university

n = 15

Exploration: conclusions

Essential in TP: gradual transition towards adult rheumatology clinic

Important components in TP: transition coordinatorinformation and education on medicationinformation about and contact with adult rheumatology

programme dealing with fatigue, school, friendsmeeting with peersaddressing parents

Leuven Transition programme

effectiveness intervention

replication other

settings

• Designed as a brief intervention

• Series of structured conversations (2 to 5) with patients and their parents

start at age 15-16, stable disease activity

• Focus on o adequate integration of condition in their liveso enhancing motivation for appropriate health behaviourso engagement in healthcare services

Leuven Transition program: aims

effectiveness intervention

replication other

settings

Improvement of physical, psychosocial and arthritis-specific health of adolescents with JIA

Improvement of medication adherenceillness-related knowledgequality of life and fatigueparenting concerns and behaviours

Steps en components

Design of a transition programme

paediatrics adult 5ealth care

transfer

1 2 3 4 5

outpa

tient

visit

outpa

tient

visit

ado-

info-d

ay

outpa

tient

visit

trans

fer pl

antransition

coordinatorinformation &

education

availability by telephone

contact adult rheumatology programme

guidance parents meeting peers

transfer plantransfer to

adult rheumatology

programme

Transition ProgrammeFirst consultation with family • Introduction transition coordinator• Getting to know the young person & parents• Education JIA & medication + weblinks/written information• Treatment plan & follow-up

Addressing the parents• Communication gradually shifts from parents toward adolescent• Support to facilitate gradual detachment: → set up time alone with the parents, agree on shared goals

transfer

Outpatient visit

1

Outpatient visit

2

Ado-info day

3

Transfer plan

4

Outpatient visit

5

Paediatrics Adult health care

Transition Programme outpatient visit 1

Transition Programme• Focus on health behaviour, fatigue, school, friends, self-image,

knowledge about disease, difficulties with medication adherence

• Adolescent communication using HEEADSSS tool• Home & Environment• Education & Employment• Eating & exercise• Activities & peer relationships• Drugs/cigarettes & Alcohol• Sexual Health, contraception• Suicide/spirituality/sleep• Social Media

transfer

Outpatient visit

1

Outpatient visit

2

Ado-info day

3

Transfer plan

4

Outpatient visit

5


Transition Programme outpatient visit 2

Adolescent-info day

• informal get-together• parallel programmes: adolescent – parents• meeting with peers• meeting adult rheumatology team• orientation tour at adult care facilities• workshop on psychological issues • cooking workshop

transfer

Outpatient visit

1

Outpatient visit

2

Ado-info day

3

Transfer plan

4

Outpatient visit

5


Adolescent-info day

Transition Programme• Individual transfer plan in electronic medical record• Communication (multidisciplinary care team, GP)

Transfer plan

Transfer outpatient visit

• Transition coordinator, adolescent and parents, adult rheumatologist

• Patient is formally handed-over to adult rheumatology team

1 3 4

Ouptient visit

5


Outcome variables and instruments

adolescent parent

Health status (PedsQL) (generic & disease specific)

Health status (PedsQL for parents) (generic and disease specific)

Medication adherence (VAS, SHCS-AQ)

Support of autonomy (Autonomy Support Scale)

Ilness-related knowledge (modified PKQ) Promotion of independence (PI Scale)

Global quality of life (LAS) Psychological control (PC Scale)

Fatigue (MVI-20)

Impact of a transition programme

Longitudinal study

Patients

35 JIA patients and parents14-18 y.

T0 T2


Patients

JIA patients and parents with TPcompared to JIA patients and parents without TP

T2

T2


Comparative study

Positive effect

Negativeeffect

Impact of a transition programme: outcomes

Adolescents

medium positive effects

‘psychosocial health’, ‘treatment’

small positive effects

‘communication’, ‘daily activities’, ‘physical health’

‘pain and hurt’

Effects of a transition programme: Primary outcome: health status (PedsQL)

large positive effect

quality of life


illness-related knowledge, activity, motivation

general, mental and physical fatigue

Effects of a transition programme: Secondary outcomes adolescents

Small to medium positive effects autonomy support, promotion of

independence behavioural control

Variable effects

worry, pain and hurt, psychological control communication

Effects of a transition programme: Secondary outcomes parents

Impact of a transition program: interviews

Transition coordinator• personal advisor• psychosocial coaching

Parents experiencesgraduality in responsibility and roleawareness of persistent diseaseconcern about evolution and future

Adolescent-information day• introduction to

adult team• feelings of

fellowship and reassurance

Illness-related knowledge

little improvement, no major interest to visit

illness-related websites/information vs

interaction TC

Conclusions

A brief transition programme for adolescents with JIA was developed, found to be feasible and well received.

A transition coordinator, a coordinated and organized programme are essential.

The transition programme was associated with improved physical & psychosocial and health status, quality of life and parenting style.

Some improvement of illness-related knowledge, but no effect on medication adherence was seen.

Involvement from young teenage life on may be important.

http://www.kuleuven.be/switch2/

Self-management and Well-being Improvements by Transitioning adolescents with Chronic disorders in

Hospital and at Home

http://www.kuleuven.be/switch2/

Transition Programme

transfer

Outpatient visit

1

Outpatient visit

2

Ado-info day

3

Transfer plan

4

Outpatient visit

5


Consult voorbereidingwww.opeigenbenen.nl


Physical impact• functional limitations• pain• fatigue

Medication•adherence problems•side effects

Relationships & Family•role as family member•pregnancy, raising children

Friends• friends who understand• making social contact can be difficult

Future•Evolution of disease•What to expect?

Adolescents

medium positive effect

‘psychosocial health’


‘daily activities’, ‘physical health’ ‘treatment’, ‘communication’

Impact of a transition programmeComparative study

Adolescents


‘activity’, ‘motivation’, ‘quality of life’

‘mental’, ‘general’ and ‘physical fatigue’


Parentsmedium positive effects ‘worry’, ‘behavioural control’


‘treatment’, ‘autonomy support’

small negative effects

‘autonomy support’, ‘psychosocial health’, ‘physical health’

medium negative effects ‘promotion of independence’

‘psychological control’

large negative effect ‘communication’


enca 2016 - genoa - carine wouters

Health & Medicine