P0534 School-related challenges in paediatric Inflammatory Bowel Diseases and the role of patient associations: results from a national survey of over 350 italian paediatric patients
Authors: Gianolio L , Silvera V , Quaglia M , Brazzoduro V , Penagini F , Dilillo D , Previtali E , Leone S , Zuccotti G V , Norsa L 
Published: January 2025

Background

In patients with IBD quality of life (QoL) is a fundamental long-term therapeutic target1. Given the significant role that school plays in the daily lives of paediatric patients, understanding its impact on their QoL is crucial2. The present study aimed to evaluate patients’ perspectives on their relationship with school, with the goal of identifying areas for practical improvement.

Methods

An anonymized survey was distributed (02/2020-11/2024) to all paediatric IBD patients and families registered with the Italian patient association AMICI. Data collected included disease type, sex and school grade (primary, secondary school, college), along with disease awareness and responses to a 20-item questionnaire evaluating various aspects of the school experience (Table 1). Questions included binary (yes/no) or ternary (often/sometimes/never) response options.

Results

A total of 362 patients (54% females; median age 16 years, IQR 13-18) responded to the survey, with the majority attending secondary school or college (326/362, 90%). Most respondents reported being aware of their disease (327/362, 90%; 38% with Crohn’s disease, 48% with ulcerative colitis) and its chronic nature (311/362, 86% - Table 2). While a significant proportion (269/362, 74%) expressed a positive attitude towards school and had disclosed their condition to at least 1 person within the school environment (286/362, 79%), several challenges were identified. In terms of empathy, only 25% (91/362) and 23% (84/362) felt to be often understood by teachers and peers, respectively. Toilet access was problematic, with just 48% (172/362) reporting unrestricted access and 62% (225/362) expressing fear of using school bathrooms (Table 1). Additionally, 25% (91/362) reported being teased due to their condition, while 22% (80/362) experienced direct aggression and/or physical/verbal bullying. Almost half (172/362, 48%) attended school despite feeling unwell to avoid criticism, with a minority having access to a support teacher (54/362, 15%) or opportunities to catch up on missed lessons (191/362, 53%). To address these issues, patients’ suggestions were training programs to educate teachers/peers (108/362, 29%) and practical improvements in restroom access/organization and absences management (51/362, 14%).

Conclusion

Despite existing awareness campaigns, national/international initiatives to educate school staff/peers and foster understanding should be implemented to ensure a more inclusive school environment, improving paediatric IBD QoL. Patient associations can play a pivotal role by identifying patients daily needs and facilitating collaboration between healthcare providers, educators and policymakers to develop tailored programs addressing emergent challenges.

References

1.Turner D, Ricciuto A, Lewis A, et al. STRIDE-II: An Update on the Selecting Therapeutic Targets in Inflammatory Bowel Disease (STRIDE) Initiative of the International Organization for the Study of IBD (IOIBD): Determining Therapeutic Goals for Treat-to-Target strategies in IBD. Gastroenterology. 2021;160(5):1570-1583. doi:10.1053/j.gastro.2020.12.031

2.Freckmann M, Seipp A, Laass MW, et al. School-related experience and performance with inflammatory bowel disease: results from a cross-sectional survey in 675 children and their parents. BMJ Open Gastroenterol. 2018;5(1):e000236. doi:10.1136/bmjgast-2018-000236