Rheumatology Advance Access originally published online on March 15, 2005
Rheumatology 2005 44(6):806-812; doi:10.1093/rheumatology/keh603
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Growing up and moving on in rheumatology: a multicentre cohort of adolescents with juvenile idiopathic arthritis
Institute of Child Health, University of Birmingham, Birmingham, UK.
Correspondence to: J. E. McDonagh, ARC Senior Lecturer in Paediatric and Adolescent Rheumatology, Institute of Child Health, Diana, Princess of Wales Children's Hospital, Steelhouse Lane, Birmingham B4 6NH, UK. E-mail: j.e.mcdonagh{at}bham.ac.uk
Objectives. To define the transitional care workload of a multicentre cohort of adolescents with juvenile idiopathic arthritis (JIA) including disease, self-advocacy and vocational issues prior to the implementation of a transitional care programme.
Methods. Data were collected using questionnaires completed by senior clinicians, patients and parents in 10 UK paediatric rheumatology centres. Entry criteria for patients included a confirmed diagnosis of JIA for at least 6 months and an age of 11, 14 or 17 yr.
Results. Of 359 families invited to participate, 308 (85.79%) adolescents with JIA and 303 parents/guardians accepted. Of these, 19.5% had persistent oligoarthritis. Despite their imminent transfer to adult care, ongoing transitional issues were identified in the 17-yr-old cohort: 55.8% were still seeing the rheumatologists with their parent, 20% were not self-medicating, 68.5% had not had intra-articular injections under local anaesthetic and 14% had received no careers counselling. This age group also had significant disease-related issues; 54.6% had moderate to severe functional disability, 67.5% were still on disease-modifying anti-rheumatic drugs and, as a group, they had significantly greater pain than younger patients.
Conclusions. This study has objectively identified the transitional care workload facing paediatric and adult rheumatologists in terms of disease-related, self-advocacy and vocational issues. Outcome data following the implementation of a coordinated transitional care programme are awaited.
KEY WORDS: Juvenile idiopathic arthritis, Adolescence, Self-advocacy, Vocational readiness, Transition, Transfer
*Contributors: E. Baildam, J. Camelleri, D. Coulson, J. Davidson, S. Ferguson, H. Foster, P. Galea, J. Gardner-Medwin, J. Hackett, A. Hall, G. Jackson, J. Kelly, S. Kemp, N. Kennedy, R. McGowan, S. Phillips, C. Pilkington, H. Venning, T. Whitely, J. Wilby, S. Wyatt, H. Wythe.
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