Patient and Caregiver Perceptions of Health-Related Quality of Life in Children and Adolescents After Allogeneic Hematopoietic Stem Cell Transplantation

Abstract

Purpose The purpose of this study was to analyze the patients’ and caregivers’ perceptions of health-related quality of life (HRQOL) of pediatric allogeneic hematopoietic stem cell transplant (HSCT) recipients. The perceptions in HRQOL of patients and their caregivers were studied using PROMS (patient-reported outcome measures) questionnaires. Methods Retrospective analysis of data from children and adolescents who underwent HSCT at our hospital between 2017 and 2022. The self-report and parent-proxy report versions of the Pediatric Quality of Life Inventory 4.0 generic core scales (PedsQL 4.0) were used to assess HRQOL in four areas (physical, emotional, social, and school functioning) as reported by patients aged ≥ 2 to < 18 years and their caregivers and evaluated 1 and 2 years after hospital discharge allogeneic HSCT. Results We collected data on the HRQOL of 36 patients and their caregivers through self- and proxy-reports. More than 70% of children and their caregivers perceived good HRQOL in all areas both 1 and 2 years after allogeneic HSCT. Patients and caregivers largely agreed in their assessments, although caregivers gave slightly higher HRQOL ratings. Children aged < 10 years had higher HRQOL scores than adolescents at both time points. Patients with an HLA-mismatched donor were at greater risk of impaired HRQOL than those with an HLA-matched donor, particularly in terms of physical functioning. Conclusions More than 70% of patients and caregivers perceived good overall HRQOL (total PedsQL score) 2 years after hospital discharge from the HSCT unit.