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Transition of care in patients with Juvenile Idiopathic

Arthritis

Philomine van Pelt, rheumatologist, trainee in paediatric

rheumatology

Wilhelmina Children's Hospital, Utrecht, Netherlands

Introduction

• What is transition of care?

• Why do we need transition?

• Current problems in transition, example

• Future models of transitional care

What is transition of care?

• purposeful, planned process

• adolescents and young adults

• chronic conditions

• child-centred to adult-orientated system

• Society for Adolescent Medicine, paediatrics 1996

Why do we need transition? (1)

• child to adult health care• continuous follow-up is important

– remission – physical disabilities– psychological changes– social consequences

• Packham and Hall, Rheumatology 2002

Why do we need transition? (2)

• Special problems during adolescence– physical– mental– social

• Problems for JIA adolescents– compliance

Example (1)

• Simone, 16 years old

• polyarticular JIA, systemic onset

• corticosteroid in past, current MTX and diclofenac

• fell in love….

Example (2)

• Klaas (16 years old), oligoarticular JIA,

• earlier knee arthritis, with leg length difference, current low back pain, stiffness

• current medication: MTX, diclofenac

• physical problems in education as a car mechanic

Who plays a role in transition?

• Patient

• Paediatric specialist

• Adult specialist

• Parents

Current problems: the patient

• No active disease activity• Can this patient cope in adult care

setting:– autonomy

• Dealing with adolescence

– Callahan et al, Curr Opinion in Ped 2001

Current problems: the paediatric specialist

• concise summary, letting go..• knowledge of adolescence• knowledge, to prepare adolescent and

parents• specialised allied health care available

– Pediatrics 2000

Current problems:the adult specialist

• getting to know the patient

• knowledge of JIA (not comparable to adult form of arthritis)

• knowledge of adolescence

• specialised allied health care available

Current problems:the parent

• letting your child go…

• knowledge of adult health care supports this process

Transition is a process, involving:

• diversity of persons

• disease related factors

• adolescence related factors

• correct timing for transition is complicated

Current transition of care in JIA in Europe, questionnaire

• preparation for patients: 82%

• preparation for adolescents: 58%

• preparation for parents: 50%

• specialised adolescence care: 64%

• AHP for adolescence: 59%

• mean age at transition: 15-20 years

Models of transition of care

• isolated care

• integrated care

• adolescence clinic

• continuous shared clinical care

!

Future models

• education in adolescence for paediatric and adult specialist

• specialist in adolescence (available in US)

Summary transition of care

• is important for adolescent with a chronic disease like JIA

• complex situation, many people involved, and at a difficult age (adolescence)

• can be improved in Europe

Utrecht Medical Centre,

in cooporation with: • Paediatric immunology and rheumatology,

Wilhelmina Children Hospital:– Dr. N.M. Wulffraat, Prof. Dr.W. Kuis

• Dept of Immunology and Rheumatology:– Dr. A.A. Kruize, Prof. J. Bijlsma

• Paediatric Medical Psychology– Dr. G. Sinnema

• Paediatric Physiotherapy– Dr. J. van der Net, Prof. Dr. P. Helders

• Dutch associate of patients– mw. H. Weustenraad