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

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2026年6月13日

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Sezin Aydemir,
Ekin Nurhan,
Isilay Turan,
Necmiye Keser Ozturk,
Betul Gemici Karaaslan,
Zeynep Meric,
Selami Ulas,
Sevgi Bilgic Eltan,
Haluk Cezmi Cokuğras,
Elif Karakoç Aydıner,
Safa Baris,
Ahmet Ozen,
Cigdem Aydogmus,
Esra Yucel,
Gizem Durcan,
Mesut Yavuz,
Burak Dogangun,
Ayca Kiykim

摘要

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.