Growing up and moving on. A multicentre UK audit of the transfer of adolescents with Juvenile Idiopathic Arthritis JIA from paediatric to adult centred care

Lindsay P Robertson ¹, Janet E McDonagh ^2*, Taunton R Southwood ² and Karen L Shaw ²

¹ Bristol Royal Infirmary, United Kingdom
² University of Birmingham, United Kingdom

^* To whom correspondence should be addressed. E-mail: j.e.mcdonagh{at}bham.ac.uk.

Accepted 14 June 2005

Abstract

Objectives: To assess the provisions made for the transfer of adolescents with juvenile idiopathic arthritis (JIA) to adult rheumatology clinics in the UK and the impact of a transitional care programme.

Methods: An audit of the documentation of the provisions made for transfer in 10 centres participating in a controlled trial of transitional care. Each centre conducted a retrospective case-note audit of the recent patients transferred to adult care before and 12 - 24 months after commencement of the trial. Demographic details, age when transition was first discussed, age at transfer, transitional issues, multidisciplinary team involvement, adolescent self-advocacy and readiness were documented.

Results: There were considerable improvements at follow-up in the documentation of transitional issues, disease-specific educational needs, adolescent readiness and parental needs with the exception of dental care, dietary calcium and home exercise programmes. The age at which the concept of an independent clinic visit was introduced was lower (16.8 ± 1.06yrs vs 15.8 ± 1.46yrs, p=0.01) but there were no other changes in the age-related transitional milestones. Significantly more had preparatory visits to the adult clinic, had a transition plan and had joint injections awake at follow up.

Conclusions: The improvement in documentation suggests that involvement in the research project increased awareness of transitional issues beyond the actual study participants. The difficulty of changing policy into practice however is highlighted with room for improvement particularly at the paediatric-adult interface. The reasons for this are likely to be multiple including resources and/or lack of specific training in this area.

Keywords: Adolescents, JIA, audit, transfer

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