Patient and caregiver perspectives on transition from pediatric to adult care in inborn errors of immunity: a Polish multicenter survey.

Introduction: Advances in the diagnosis and treatment of inborn errors of immunity (IEI) have improved survival rates, resulting in a growing population of adolescents requiring transition from pediatric to adult immunology care. However, data reflecting real-world transition practices remain limited. This multicenter survey aimed to assess current patient and caregiver experiences of the transition process in Poland. Materials and methods: The analysis included data collected from adult patients with IEI and their parents or caregivers after transition to adult care. A structured, study-specific questionnaire developed by the authors was used to assess characteristics of the transition process and satisfaction with care. Illness perception was evaluated using the validated Brief Illness Perception Questionnaire (B-IPQ). Results: A total of 50 patients with inborn errors of immunity and 18 parents or caregivers were included in the analysis. Lack of transition preparation was significantly associated with a greater emotional burden of illness, with unprepared patients reporting higher scores in the Emotional Representation domain of the B-IPQ compared with prepared patients (6.42 vs. 4.06; p = 0.019). A trend toward greater perceived personal control over illness was observed among prepared patients (p = 0.050). Prepared patients more frequently attended medical appointments without parental presence (80.6% vs. 50.0%, p = 0.033). Patients with comorbidities reported significantly greater symptom severity (p = 0.004) and greater impact of illness on daily functioning (p = 0.028) compared with patients without comorbidities. Despite this higher disease burden, patients with comorbidities reported lower rates of transition preparation (65.4% vs. 79.2%). Comparison of patient and parent perspectives demonstrated high concordance in reported transition preparation rates and ratings of adult care quality. However, patients rated the transition process more positively than their parents. The most frequently reported difficulties during transition included poor coordination between pediatric and adult centers, insufficient engagement of medical staff, and lack of psychological support. Conclusions: This first Polish study demonstrated a statistically significant association between transition preparation and lower emotional burden of illness among young adults with IEI. Patients who were not prepared for transition reported a greater negative emotional impact of their condition. These findings provide empirical support for the development of national transition guidelines for IEI in Poland, including structured transition preparation, dedicated transition coordinator roles, and the integration of psychosocial support into routine care.