Adolescents with inborn errors of immunity (IEI) experience disease-related absenteeism and psychosocial challenges that can compromise schooling. Evidence integrating perspectives across stakeholders is limited.
To map school-related strengths and gaps for adolescents with IEI across patients, caregivers, teachers, and classmates to inform actionable improvements.
Prospective cross-sectional study (May–June 2021) using multi-informant questionnaires co-created with researchers for Vall d’Hebron Research Institute and the Barcelona PID Foundation’s patient council. Instruments covered five domains (knowledge, adaptation, school’s understanding, coordination, and socialization) plus a cross-cutting prioritization of “most challenging areas.”
Participants: 13 adolescents with confirmed IEI (13 schools), 21 parents, 13 tutor teachers, and 74 classmates. Descriptive analyses summarized agreement and free-text themes.
Half of the students reported difficulty keeping up academically. Most teachers (11/13) wanted additional IEI training; 8/13 lacked detailed medical information, and 7/13 schools had no absenteeism action protocol. Parents frequently endorsed unmet academic/social needs and favored disclosure to staff/classmates. Classmates showed positive social acceptance and strong interest in learning about IEI, while perceiving insufficient disease-specific information. Free-text comments highlighted anxiety on returning after hospitalizations and the importance of role-specific guidance for school staff. Overall, supportive peer environments contrasted with system gaps in protocols and school–healthcare coordination.
IEI substantially affects schooling despite supportive peers. Priorities include co-developed, teacher-facing protocols for absenteeism, structured school–healthcare coordination pathways, and targeted educator training, disseminated via scientific societies and patient organizations. Future multicenter studies should validate stakeholder-aligned instruments and evaluate scalable implementation strategies to improve educational outcomes and quality of life in adolescents with IEI.
