?. Transition of care in patients with Juvenile Idiopathic Arthritis Philomine van Pelt, rheumatologist, trainee in paediatric rheumatology Wilhelmina.

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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: 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