Objective: The objective of this study was to identify patient-reported school barriers and their associated impact in juvenile idiopathic arthritis (JIA).
Methods: A cross-sectional observational study of children aged 8 to 17, diagnosed with JIA, and followed in the rheumatology clinic/Alberta Children's Hospital was performed. Demographics, diagnosis, and disease course were obtained from health records. A questionnaire was administered to the child to assess the barriers experienced by JIA patients at school. The questionnaire collected information about school attendance/performance, impact of JIA symptoms (eg, pain and fatigue), physical challenges and accommodations, communication, participation and peers, and school support. Descriptive statistics were used to analyze the data.
Results: A total of 98 children with JIA were recruited into the study. The median age of participants was 13 years (interquartile range 11-15). The JIA subtypes in this cohort reflected the normal JIA distribution. Physical challenges at school (eg, gym, writing, and sitting for long periods of time) were reported by 42.1% of patients. Accommodations (eg, modified gym, accommodation letter, and computer access) were used by 23% of patients. The inability to participate in activities in class or outside with their peers occurred for 32.2% of patients and in gym for 40.7% of patients. Social concerns included embarrassment from talking about their illness, worry regarding being treated differently, and being told they were fabricating their illness.
Conclusion: Children with JIA experienced barriers at school, especially physical challenges, with a need for accommodations in a proportion of children. Decreased participation and increased social anxiety were additional key barriers.
© 2019 The Authors. ACR Open Rheumatology published by Wiley Periodicals Inc on behalf of American College of Rheumatology.