Transition in Juvenile Arthritis patients

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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

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Introduction

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

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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

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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

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Why do we need transition? (2)

• Special problems during adolescence
• physical
• mental
• social
• Problems for JIA adolescents
• compliance

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Example (1)

• Simone, 16 years old
• polyarticular JIA, systemic onset
• corticosteroid in past, current MTX and
  diclofenac
• fell in love.

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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

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Who plays a role in transition?

• Patient
• Paediatric specialist
• Adult specialist
• Parents

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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

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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

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Current problemsthe 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

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Current problemsthe parent

• letting your child go
• knowledge of adult health care supports this
  process

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Transition is a process, involving

• diversity of persons
• disease related factors
• adolescence related factors
• correct timing for transition is complicated

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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

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Models of transition of care

• isolated care
• integrated care
• adolescence clinic
• continuous shared clinical care

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Future models

• education in adolescence for paediatric and adult
  specialist
• specialist in adolescence (available in US)

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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

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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