Healthcare of Children, Adolescents and Young Adults with Juvenile Idiopathic Arthritis

Background Multi-centre observational studies, such as the National Paediatric Rheumatologic Database (NPRD), and nationwide claims data provide information on the healthcare situation of children, adolescents and young adults with juvenile idiopathic arthritis (JIA). They allow to characterise changes in JIA phenotypes, treatments and outcomes over time, and to identify healthcare deficits. Methods Based on data from the NPRD, the survey on paediatric rheumatologic care services conducted by the Society of Paediatric Rheumatology in 2017 and recent publications, the healthcare situation of JIA patients is presented. In addition to patients' disease activity recorded in the NPRD (assessed on the basis of the clinical JADAS-10 [Juvenile Arthritis Disease Activity Score]), the patient- reported outcomes functional ability (determined by means of the Childhood Health Assessment Questionnaire) and pain (determined by means of a numerical rating scale) were considered to assess the burden of disease. Results The healthcare of children and adolescents suffering from JIA has changed dramatically since 2000. More than 160 paediatric rheumatologists are now available nationwide for the treatment of affected children and adolescents. Specialist care for JIA patients is mainly provided by rheumatologists working at hospitals. However, the frequency of inpatient treatment has decreased. In 2016, 22 % of all JIA patients were treated with biologics; in patients with systemic JIA this percentage was almost 40 %. As the use of biologics has increased, glucocorticoids and NSAIDs have become less important. The burden of disease among children and adolescents with JIA has declined in recent years. Both average disease activity and functional limitations in everyday life have decreased over time, whereas the mean pain intensity has not changed. It is estimated that at least two-thirds of JIA patients receive specialist care by rheumatologists in childhood and adolescence. In young adulthood, the proportion of those in specialist care is smaller, which has an effect on the medical treatment of affected patients. Conclusion With the currently available healthcare services and treatment strategies, the burden of disease in JIA patients can be successfully reduced. However, patients can only benefit from the new options if they have early access and receive continuous specialist care.