ArticleCrohn's & colitis 3602026
School life in children with inflammatory bowel diseases: from a national survey to a patient-driven awareness initiative.
Article in Crohn's & colitis 360, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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8 authors.
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Abstract
Background: School plays a crucial role in the daily life of pediatric patients with inflammatory bowel disease (IBD). Our study aimed to evaluate patients' perspectives on school environment and identify improvement areas. Methods: An anonymized patient-driven school survey was distributed via an online platform between February and November 2024 to all pediatric IBD patients and families registered with the Italian IBD patient association (AMICI). Results: Overall, 362 IBD patients responded, of whom 326/362 (90%) were in secondary school. Most respondents reported being aware of their disease (327/342, 96%). While the majority expressed a positive attitude towards school (269/342, 79%) and had disclosed their condition to at least 1 person at school (286/318, 90%), challenges were identified. Only 91/308 (30%) and 84/318 (26%) felt often understood by teachers and peers, respectively. Toilet access was problematic, with 225/318 (71%) expressing fear of using school bathrooms. Additionally, 80/313 (26%) experienced at least occasionally physical/verbal bullying. More than half (172/310, 55%) attended school despite feeling unwell to avoid criticism, with a minority having opportunities to catch up on missed lessons (95/261, 36%). To address these issues, patients' suggestions included training programs to educate teachers/peers and practical improvements in restroom access and absence management. Conclusions: This national patient-driven survey highlights substantial unmet needs in the school environment for children/young adults with IBD, underscoring the need for targeted interventions to improve inclusion and quality of life. Patient associations play a key role in identifying everyday challenges and fostering collaboration among clinicians, institutions, and policymakers to implement meaningful change.
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