Adolescents with juvenile idiopathic arthritis: who cares after the age of 16?

OBJECTIVES

Medical follow-up in the most appropriate treatment setting is important for patients with juvenile idiopathic arthritis (JIA). The aims of this study were 1) to identify the settings in which JIA patients are followed up after leaving paediatric rheumatology, and 2) to compare the clinical profile of patients in different settings.

METHODS

The Short Form-36, Health Assessment Questionnaire, and linear analogue scale for quality of life were sent to JIA patients older than 16 years, who had been followed in one academic paediatric rheumatology centre from 1994 to 2007 and who did not participate in a structured transitional care program. Forty-four patients participated in this cross-sectional, comparative study.

RESULTS

Thirteen patients were no longer in medical follow-up, 6 patients were followed by their general practitioner, and 25 patients were followed by a rheumatologist. All patients treated with glucocorticosteroids, DMARDs and anti-TNF were followed by a rheumatologist. Patients under the care of a rheumatologist had worse physical functioning (U=33.5, p<0.001); greater disability (U=49.0, p=0.001); more pain (U=59.0, p=0.002); and lower quality of life (U=69, p=0.02) than patients not in follow-up. Of the patients no longer in follow-up, 2 (16.7%) had disabilities and 5 (41.7%) reported persistent pain.

CONCLUSIONS

The present data indicated that JIA patients with persistent disease and associated functional disabilities tend to remain in the rheumatology circuit. However, the disease of patients leaving specialised rheumatology care is not necessarily controlled. These data may be helpful for organising the proper transfer of patients from paediatric to adult-focused care.