Access to paediatric rheumatology care in juvenile idiopathic arthritis: what do we know? A systematic review

Abstract

Objective: This review examines time to access appropriate care for JIA patients and analyses the referral pathway before the first paediatric rheumatology (PR) visit. We also describe factors associated with a longer referral.

Methods: We performed a systematic literature review, screening electronic databases (PubMed, Web of Science, EMBASE, Cochrane library and Open Grey database) up to February 2020. Articles written before 1994 (i.e. before the introduction of the unifying term JIA) were excluded.

Results: From 595 nonduplicate citations found, 15 articles were finally included in the review. Most of the studies took place in Europe. The median time to first PR visit ranged from 3 to 10 months, with some disparities between referral pathway and patient characteristics. Patients with systemic-onset JIA had the shortest time to referral. Some clinical and biological factors such as swelling, fever, and elevated CRP and/or ESR were associated with a shorter time to first PR visit. Conversely, enthesitis, older age at symptom onset or pain were associated with a longer time. Whatever the country or world region, and despite disparities in healthcare system organization and healthcare practitioner availabilities, times to access PR were not wide-ranging.

Conclusion: This is the first systematic review to summarize research on access to PR for JIA patients. The pathway of care for JIA patients remains complex, and reasons for delayed referral depend on several factors. Standardized clinical guidelines and fast-track pathways to facilitate prompt referral to specialized teams have to allow for worldwide disparities in healthcare provision.

Keywords: JIA; access to care; paediatric rheumatology; referral pathway; time to referral.