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Inborn errors of immunity at school: How can we do better?
Laura Lopez-Seguer1,2,3, Sonia Rodriguez-Tello1,2,3, Miriam Gonzalez-Amores1,2
1Infection and Immunity in Pediatric Patients Research Group. Vall d'Hebron Research Institute, Vall d'Hebron Barcelona Hospital Campus, Barcelona, Spain.
Journal of Human Immunity
|May 22, 2026
Summary
Adolescents with inborn errors of immunity (IEI) experience significant challenges in school. Enhancing school adaptation requires better information, absenteeism protocols, and healthcare coordination.
Area of Science:
- Pediatric Immunology
- Adolescent Health
- Educational Psychology
Background:
- Inborn errors of immunity (IEI) present multifaceted challenges for adolescents, including physical, social, and psychological difficulties.
- School absenteeism and academic struggles are common issues faced by adolescents with IEI, impacting their overall development.
- Effective school integration is crucial for the well-being and academic success of these students.
Purpose of the Study:
- To evaluate social and academic adaptation indicators for adolescents with IEI in a high school setting.
- To assess the perceptions of adolescents, parents, teachers, and classmates regarding adaptation to IEI in school.
- To identify key challenges and areas for improvement in supporting adolescents with IEI at school.
Main Methods:
- A mixed-methods study involving 13 adolescents with confirmed IEI, their parents, classmates, and teachers.
- Development and administration of a questionnaire assessing perceptions of diagnosis, adaptation, understanding, socialization, coordination, and challenges.
- Analysis of data collected from adolescents (median age 13.8), parents (n=21), teachers (n=13), and classmates (n=74).
Main Results:
- Fifty percent of adolescents with IEI experienced difficulties keeping up with their education due to their condition.
- A significant number of tutor teachers (11/13) lacked specific knowledge and requested further training.
- Most schools (7/13) lacked absenteeism protocols, and many teachers (8/13) were unaware of relevant patient associations.
Conclusions:
- Inborn errors of immunity significantly impact adolescents' educational experiences and school adaptation.
- There is a critical need for improved information dissemination, structured absenteeism protocols, and enhanced coordination between healthcare teams and schools.
- Facilitating contact with patient associations can further support the school adaptation of adolescents with IEI.
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