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Rheumatology Advance Access published online on March 23, 2004
Rheumatology, doi:10.1093/rheumatology/keh175
Rheumatology © British Society for Rheumatology 2004; all rights reserved
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© 2004 British Society for Rheumatology; all rights reserved

Original Papers

User perspectives of transitional care for adolescents with juvenile idiopathic arthritis

K. L. Shaw 1, T. R. Southwood 1, J. E. McDonagh 1*, and on behalf of the British Paediatric Rheumatology Group

1 Institute of Child Health, University of Birmingham, Birmingham, UK

* Corresponding author. E-mail: j.e.mcdonagh{at}bham.ac.uk.

Received 13 November 2003 ; accepted 11 February 2004

Abstract

Objectives. To gain insight into the transitional needs of adolescents with juvenile idiopathic arthritis (JIA) and to examine how these needs may be addressed within a structured programme of transitional care.

Methods. A qualitative study using focused group discussions was performed. Groups comprised (i) adolescents with JIA aged 12-18 yr, (ii) young adults with JIA aged 19-30 yr, (iii) parents of adolescents with JIA, and (iv) parents of young adults with JIA.

Results. Transitional needs included aspects of participants’ physical, social, psychological and vocational lives. Participants (n = 55) called for developmentally appropriate care based upon shared decision-making, continuity of health professionals, and wider access to information and community services. Suggestions for improved care included individualized assessment of patient’s holistic needs and increased transfer preparation.

Conclusions. These results provide a useful guide to transitional care and suggest an approach that is adolescent-focused and evidence-based.

Key words: Juvenile idiopathic arthritis, Adolescence, Transition, Focus groups.
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