Transition in pediatric rheumatology- experiences from the pediatric rheumatismcenter Sankt Augustin

BackgroundTransition is ajoint effort of the young patients, their families and the attending pediatric and adult rheumatologists. The quality of the transitional process for patients with rheumatic diseases was retrospectively reviewed using astandardized questionnaire. Patients were transferred to rheumatologists for adult care through personal contact, if possible.MethodsInclusion criteria were: diagnosis of chronic inflammatory rheumatic joint disease or systemic rheumatic disease, duration of care for >2years in the pediatric rheumatology center and 2presentations at the age of 17-18years. Atelephone interview was performed using astandardized questionnaire on the type of care, medication, diagnosis, satisfaction with the care and the transition process.ResultsOf the 62 enrolled patients 50 (81%) had juvenile idiopathic arthritis (JIA). In total, 40patients (65%) were seen by an adult rheumatologist on aregular basis. Reasons for discontinuation of medical care were mainly freedom of symptoms, lack of time and non-compliance. Before and after transition, 15 and 9 patients, respectively were treated with conventional disease-modifying antirheumatic drugs (DMARD) and 27 and 27, respectively with biologics. The subjective assessment of medical care in pediatric rheumatology was (mean +/- SD) 9.3 +/- 1.05, in adult rheumatology 7.6 +/- 1.1 and the satisfaction with the transition process was 7.7 +/- 2.1. Problem issues mentioned by some patients were lack of time with the rheumatologist and long waiting periods for appointments.DiscussionIndividual transfer of patients from pediatric to adult rheumatology care was associated with a high degree of satisfaction in this analysis. Change of diagnosis or an unexpected termination of rheumatology treatment was not detected