When cure is not enough: Parental anxiety, depression, and caregiver burden after HSCT for inborn errors of immunity
Sezin Aydemir, Gizem Durcan, 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, Mesut Yavuz, Esra Yucel, Burak Dogangun, Ayca KiykimAbstract
Introduction
Hematopoietic stem cell transplantation (HSCT) is curative for many children with inborn errors of immunity (IEIs). While research has largely focused on survival, immune reconstitution, and transplant‐related complications, the long‐term psychosocial impact on families of medically stable, complication‐free survivors remains poorly understood.
Methods
In this cross‐sectional case–control study, 79 children with IEIs who achieved full immune reconstitution after HSCT and were free of chronic disease‐ or transplant‐related complications were compared with 69 age‐ and sex‐matched healthy controls. Parents completed the Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI), and Zarit Burden Interview (ZBI). Caregivers also completed the parent‐report Strengths and Difficulties Questionnaire (SDQ). Linear regression analysis was performed to identify factors associated with caregiver burden.
Results
Mothers of transplanted children had significantly higher depression, anxiety, and caregiver burden scores than control mothers (all p ≤ .001). Fathers demonstrated higher depression scores, whereas anxiety scores did not differ significantly. Maternal depression independently predicted caregiver burden ( β = .913, 95% CI 0.512–1.314, p < .001). Children in the patient group showed higher conduct problem and hyperactivity scores, with a trend toward greater internalizing difficulties. Psychological outcomes were not associated with demographic characteristics, disease‐related factors, or time since transplantation.
Discussion
Despite successful immune reconstitution and the absence of chronic complications, families continued to experience substantial psychosocial burden. Maternal depressive symptoms emerged as the strongest determinant of caregiver burden. These findings suggest that medical recovery after HSCT does not necessarily translate into psychosocial recovery and support the integration of routine family‐centered psychological assessment into long‐term follow‐up care.