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.

Real-world psychosocial impact among patients with juvenile idiopathic arthritis and families in Spain

“…In contrast, our study showed that the school absenteeism because of JIA was low [mean (SD) 15.7 (25.2) days/24 months]. Similarly, a recent cross-sectional study of Canadian JIA patients aged 8-17 years with a mean [interquartile range (IQR)] disease duration of 5 (3-8) years, showed that fewer days of schooling were missed (7/per year) [10]. Higher school absenteeism has been reported by other authors [26].…”

“…A Danish study also showed less physical activity than healthy children of the same age, which was not justified by JIA-related inflammation or pain [27]. In Canada similar results were reported, 32.2% of patients were unable to participate in activities within or outside the class, and 40.7% were unable to participate in the gym 10 . JIA patients are encouraged to be physically active to promote positive psychosocial and biological effects of exercise [28].…”

“…Higher school absenteeism has been reported by other authors [26]. However, the countries in which these studies were performed vary drastically from North America or Europe regarding educational economic and health care systems [10].…”

Exploring academic achievement and relevant risk factors among a community sample of adolescents with chronic pain compared to peers

“…This complex coexistence of both delayed and accelerated areas of development is a critical consideration, therefore, in identifying the unique challenges that young people with chronic pain may face and the potential skills that they may possess to overcome them. Furthermore, Chomistek et al (2019) observed that most students receive additional resources from teachers to support them with difficulties arising from chronic pain, while Vervoort et al (2014) discussed how perceived teacher support of autonomy and school competence moderated the effect of chronic pain severity on perceived school performance.…”

Handwriting speed in juvenile idiopathic arthritis using the detailed assessment of speed of handwriting

“…They found 30% reported difficulties writing and 20% percent had accommodations at school including computer or tablet access, extra time for tests, or modified gym. [10] A recent qualitative study in 2021, explored the experience of teachers supporting children aged 7 to 11 years old with JIA. They describe four key themes to best support children with JIA; communicating (with child, parents, healthcare team); flexing and adapting (ability to provide individualized support to maximize inclusion); inclusion (mindful child is not seen as 'different'); and learning and knowing (continuing education).…”