Inborn errors of immunity at school: How can we do better?

Adolescents with inborn errors of immunity (IEI) face physical limitations, social difficulties, psychological issues, and school absenteeism. Improving their school integration is essential. 13 adolescents with confirmed IEI attending high school, along with their parents, classmates, and teachers, participated in the study to evaluate social and academic adaptation indicators. A questionnaire was developed to gather perceptions on diagnosis, adaptation, understanding, socialization, coordination, and challenges. 13 adolescents (median age 13.8, IQR 13–15), 21 parents, 13 teachers, and 74 classmates participated. The illness impacted education, making it difficult for 50% of the students to keep up. 11 tutor teachers lacked specific knowledge and demanded more training. Most schools, 7/13, lacked absenteeism protocols, and 8/13 teachers were unaware of patient associations. Most classmates did not observe discriminatory behavior. IEI affect adolescents’ education. There is a need for better information, protocols to prevent absenteeism, improved coordination with healthcare teams, and contact with patient associations to enhance school adaptation.