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Transition of care in patients with Juvenile Idiopathic Arthritis

?. 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?

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Transition of care in patients with Juvenile Idiopathic Arthritis

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  1. ?

  2. Transition of care in patients with Juvenile Idiopathic Arthritis Philomine van Pelt, rheumatologist, trainee in paediatric rheumatology Wilhelmina Children's Hospital, Utrecht, Netherlands

  3. Introduction • What is transition of care? • Why do we need transition? • Current problems in transition, example • Future models of transitional care

  4. 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

  5. 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

  6. Why do we need transition? (2) • Special problems during adolescence • physical • mental • social • Problems for JIA adolescents • compliance

  7. Example (1) • Simone, 16 years old • polyarticular JIA, systemic onset • corticosteroid in past, current MTX and diclofenac • fell in love….

  8. 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

  9. Who plays a role in transition? • Patient • Paediatric specialist • Adult specialist • Parents

  10. 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

  11. 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

  12. 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

  13. Current problems:the parent • letting your child go… • knowledge of adult health care supports this process

  14. Transition is a process, involving: • diversity of persons • disease related factors • adolescence related factors • correct timing for transition is complicated

  15. 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

  16. Models of transition of care • isolated care • integrated care • adolescence clinic • continuous shared clinical care

  17. !

  18. Future models • education in adolescence for paediatric and adult specialist • specialist in adolescence (available in US)

  19. 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

  20. 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

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