Audit of rheumatology services for adolescents and young adults in the UK. British Paediatric Rheumatology Group

Abstract

Background: Juvenile idiopathic arthritis (JIA) is associated with significant morbidity in adulthood with at least one third of children continuing to have active inflammatory disease into their adult years and up to 60% of all patients continuing to have some limitation of their activities of daily living. A survey of service provision for these young people in the transition from paediatric to adult rheumatology care was therefore undertaken.

Methods: A postal questionnaire was sent to all 92 members of the British Paediatric Rheumatology Group, representing 61 units providing a paediatric rheumatology service in the UK and Eire.

Results: Fifty-five replies were received representing a 60% completion rate of doctors and 84% of units on the mailing list. The majority of respondents were adult rheumatologists (n = 36, 65%) with 42% of respondents based in teaching hospitals. A median of 24 patients (new and follow-up, range 1-225) were seen in a median of two paediatric rheumatology clinics (range 0-15) per month. Eighteen per cent of units had a dedicated adolescent clinic (n = 9) with a median of one clinic per month and a median number of new patients per month of two (range 0-24) and 10 review patients (4-32). All the adolescent clinics involved an adult rheumatologist with five having a paediatrician in clinic and four having access to a paediatrician. The majority of clinics involved a specialist registrar (n = 6), a nurse specialist (n = 6), an occupational therapist (n = 6) and a physiotherapist (n = 5). The majority of clinics had flexible entry and exit criteria. In seven clinics there was a standardized process of transfer, first discussed at a median age of 13 yr (range 12-16) but no unit provided literature or organized pre-visits for this process. A demand for patient information resources (e.g. disease and drug information, careers) specifically aimed at adolescents with rheumatic diseases was identified. Generic health issues were only addressed by two clinics. Obstacles to current service provision and ideas for future developments were identified.

Conclusions: This survey identifies a heterogeneity of provision of healthcare for adolescents with rheumatic disease and highlights the potential for further research and development.