Beyond immune recovery: Quality of life and psychosocial challenges in children with inborn errors of immunity after transplantation

Abstract Introduction Hematopoietic stem cell transplantation (HSCT) provides definitive treatment for many inborn errors of immunity (IEI). Although most children achieve full immune reconstitution, long-term psychosocial and quality-of-life outcomes in medically stable survivors remain insufficiently understood. Methods Children aged 8–18 years with IEI who achieved complete immune recovery and had no chronic complications were included. Quality of life and psychological status were evaluated using the Pediatric Quality of Life Inventory (PedsQL-C) and the Revised Children’s Anxiety and Depression Scale (RCADS). Healthy children matched for age, sex, and sociodemographic background served as controls. Results Thirty-six patients and 41 controls participated. Children post-HSCT had significantly lower physical, psychosocial, and total quality-of-life scores (p = 0.022, 0.015, 0.006) and higher depression scores (p = 0.027). One-quarter of school-aged patients were not attending school, and one-third of families restricted exposure to crowded environments. Conclusion Despite immune recovery, children remain vulnerable to psychosocial challenges. These findings support incorporation of routine psychological assessment and family counseling into long-term post-HSCT follow‑up.