Background Juvenile Idiopathic Arthritis (JIA) is chronic inflammatory disease which affects 1 in 1000 children worldwide. There is limited access to Paediatric Rheumatology (PR) worldwide and more in United Arab Emirates (UAE). Society is multi-cultural. Healthcare insurance coverage is premium-free and comprehensive for Emirati children and standard for non-Emiratis. Healthcare is provided through public hospitals and private sector. PR is only available in one public hospital in the country with referrals from public and private healthcare givers.
Objectives The primary objective is to identify barriers to access care in JIA to paediatric rheumatology in UAE. The secondary objective is study the effect of health care insurance coverage on type of care provided and clinical outcome.
Methods JIA cases identified through hospital electronic coding system from January 2011 to December 2014. Retrospective review of electronic records and paper case notes of cases presented to the hospital Centre. We looked at percentage of Emirati children to total children. Subtypes of JIA in each group. Time in months (with range) from onset to first appointment in PR and diagnosis. Number of patients on DMARD alone and with biologics. Number of patients in remission on treatment and number of patients with disability secondary to JIA. Ethical approval granted by hospital IRB.
Results 73 cases with JIA: 40 Emirati (29 female and 11 male). Non Emiratis 33 (21 females and 12 male). The 40 Emiratis (4 systemic, 10 persistent oligo, 2 extended oligo,17 poly (7 RF +ve, 10 RF-ve), no enthesitis or psoriatic and 7 other JIA (1 cystic fibrosis associated arthritis and 6 progressive with suspected genetic component).The 33 non-Emiratis (9 systemic, 6 persistent oligo, 1 extended oligo,15 poly (5 RF +ve, 10 RF -ve), 1 enthesitis related arthritis, 1 psoriatic and 0 other JIA. Mean time from onset to first appointment with paediatric rheumatology and diagnosis of 9 months (range 1 to 48) for Emiratis and 12.4 months (range 1 to 96) for Non-Emiratis. 31 (77.5%) Emiratis and 25 (75.7%) none-Emiratis saw more than 2 health professionals prior to referral to PR. 10 Emiratis currently on biologics with methotrexate (4 etanercept, 2 adalimumab, 1 infliximab, 2 tocilizumab and 1 abatacept) and 10 on methotrexate alone. For non-Emiratis 15 on biologics with methotrexate (7 etanercept, 2 adalimumab, 1 infliximab, 5 tocilizumab) and 5 on methotrexate alone. For Emiratis 9 currently in remission while on treatment and for non-Emiratis 8 (symptom free, CHAQ score of 0, joint count of 0 and normal inflammatory markers). One Emirati patient with blindness and one non Emirati with joint deformities secondary to noncompliance and previous under treatment.
Conclusions Although numbers are small and this by itself reflects under referral of patients with the possible diagnosis of JIA. We have identified that referral time is the number one barrier to access care for children with JIA. Type of health care coverage did not influence type of care given or outcome. There is still lack of awareness of other health professionals of presentations of juvenile arthritis hence the lengthy referral time and the public awareness of condition and education of treatments provided is vital to avoid preventable significant disability
Disclosure of Interest None declared