Background/Purpose:

Few studies in children with chronic illnesses/disability have reported challenges faced by patients at school. Therefore, the objective of this study is to identify 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 followed at the Rheumatology Clinic/Alberta Children’s Hospital was performed between July and December 2016. Demographics, diagnosis and disease course were obtained from health records. A survey was administered to the child/caregiver to assess the barriers experienced by JIA patients at school. The survey collected information about school attendance/performance, impact of JIA symptoms (e.g. pain, fatigue), challenges and accommodations, communication, participation/peers, and school support. Descriptive statistics were used to analyze the data.

Results:  A total of 80 children were recruited into the study. The median age of participants was 13 (range 8-17). The most common subtypes were rheumatoid factor negative polyarticular JIA (36%) and oligoarticular persistent JIA (33.7%) with a median disease duration of 5 years (range 0-15). The treatment included DMARDS (68.9%), NSAIDS (37.8%), biologics (36.7%), steroids (3.3%) and no medication (10%). Appointments, illness and JIA symptoms had a minor impact on school attendance and performance. However, physical challenges (e.g. gym, writing, sitting for long periods of time) at school were a barrier for 42.9% (sometimes 31.2%, often 9.1 %, almost always 2.6%). 25% recorded using accommodations (e.g. modified gym, accommodation letter, computer access). Patients were unable to participate in activities in class/outside with their peers (36.8%; sometimes 32.9%, almost always 3.9%) and in gym (41.4%; sometimes 35.7%, often 5.7%). Patients told their teachers/gym teacher about their disease (81%) but most patients did not continue to update their teachers. 9.5% of participants reported that their teachers did not understand their illness compared to 19.1% of gym teachers. 81.7% of participants told their friends about their illness and 41.9% told their classmates. Social concerns included being treated differently, being told they were faking their illness, and looking like they weren’t trying. The majority reported that the school was supportive of their illness (86%). Barriers tend to be reported more often by patients with active disease.

Conclusion:

JIA had a minor impact on school attendance and performance. However, many patients experienced some impacting physical challenges. Additional barriers included teacher understanding, participation and social anxiety.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/barriers-at-school-for-children-with-juvenile-idiopathic-arthritis-jia-a-patient-reported-outcome-2/