Addressing the Unmet Educational Needs of Students with Epidermolysis Bullosa in Saudi Arabia.

PURPOSE

Epidermolysis bullosa (EB) is a rare genodermatosis characterized by fragility and blistering of the skin and mucous membranes following minor trauma. Attending school presents unique educational and psychosocial challenges for students with EB. This study aimed to investigate perceptions of school climate and educational experiences among students with EB in Saudi Arabia.

METHODS

A cross-sectional observational study was conducted involving students with EB, aged 3-22 years, recruited from the Saudi EB registry. Data were collected using a self-reported 23-item multidimensional questionnaire assessing physical, psychological, social, financial, and learning domains. Data were collected from January 2024 to April 2024. Descriptive and inferential statistical analyses were performed using SPSS software.

RESULTS

Thirty-one students with EB were enrolled in this study. The EB subtypes were as follows: EB simplex (n=10), junctional EB (n=7), dystrophic EB (n=11), Kindler EB (n=1), and two patients with unknown types. Participants had an overall negative perception of school climate (mean, 58.5±14.3). A significant proportion of students experienced delayed entry into elementary school due to EB (41.9%). Students with junctional EB, those in high school, late-entry grade 1 students, and those from low-income families reported more negative perceptions of the school climate. Key challenges included difficulty in physical education classes, stigmatization, bullying, social isolation, and chronic wound-related pain and itching. Frequent absences were reported by 51.6% of the students. Homeschooled students demonstrated better learning scores than those attending traditional schools. Students with severe EB subtypes (junctional and dystrophic EB) demonstrated a higher preference for homeschooling.

CONCLUSION

This study highlights the unmet needs of students with EB and provides insights into recommendations to enhance their adjustment in schools. Students with EB face substantial educational and psychosocial challenges. Tailored accommodations are needed to promote inclusion and improve school experiences for this population.