“School life in children with inflammatory Bowel Diseases: from a national survey to a patient-driven awareness initiative”
Laura Gianolio, Valentina Silvera, Alice Bianchi, Francesca Penagini, Enrica Previtali, Salvo Leone, Gianvincenzo Zuccotti, Lorenzo NorsaAbstract
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 were training programs to educate teachers/peers and practical improvements in restroom access and absences 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.