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
paediatrics adult health care
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
paediatrics adult health care
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
paediatrics adult health 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
RQ 3: What does it mean to grow up with JIA?
RQ 3: What does it mean to grow up with JIA?
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
Paediatrics Adult health care
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
Paediatrics Adult health care
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
Paediatrics Adult health care
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
Impact of a transition programme
Patients
JIA patients and parents with TPcompared to JIA patients and parents without TP
T2
T2
Impact of a transition programme
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
small positive effects
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
Transition Programme
transfer
Outpatient visit
1
Outpatient visit
2
Ado-info day
3
Transfer plan
4
Outpatient visit
5
Paediatrics Adult health care
Consult voorbereidingwww.opeigenbenen.nl
RQ 3: What does it mean to grow up with JIA?
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’
small positive effects
‘daily activities’, ‘physical health’ ‘treatment’, ‘communication’
Impact of a transition programmeComparative study
Adolescents
small positive effects
‘activity’, ‘motivation’, ‘quality of life’
‘mental’, ‘general’ and ‘physical fatigue’
Impact of a transition programmeComparative study
Parentsmedium positive effects ‘worry’, ‘behavioural control’
small positive effects
‘treatment’, ‘autonomy support’
small negative effects
‘autonomy support’, ‘psychosocial health’, ‘physical health’
medium negative effects ‘promotion of independence’
‘psychological control’
large negative effect ‘communication’
Impact of a transition programmeComparative study
Recommended