Patient-Reported Barriers at School for Children with Juvenile Idiopathic Arthritis.

Abstract

ObjectiveThe objective of this study was to identify patient‐reported school barriers and their associated impact in juvenile idiopathic arthritis (JIA).MethodsA 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.ResultsA 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.ConclusionChildren 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.