?. transition of care in patients with juvenile idiopathic arthritis philomine van pelt,...
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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