Patient‑Reported Late Effects in Allogeneic Hematopoietic Stem Cell Transplantation Survivorship: A Nationwide Population‑Based Study

Background Survivorship after allogeneic hematopoietic stem‑cell transplantation (allo‑HCT) is associated with late effects and chronic graft‑versus‑host disease (cGVHD), but population‑level data on patient‑reported outcomes remain limited. Objective To characterize the multidimensional burden of patient-reported late effects in a nationwide cohort of allo-HCT survivors, compare health-related quality of life (HRQOL) with Danish population reference values, and identify symptoms and functional impairments exceeding thresholds for clinical importance. Study design In this nationwide, population-based cross-sectional study, adult allo-HCT survivors transplanted in Denmark between 1973 and 2024 were identified through transplant databases and registry linkage. Participants completed the EORTC Survivorship Questionnaire (QLQ-SURV100). QLQ-C30-equivalent HRQOL scores were compared with age- and sex-stratified Danish population reference values, and thresholds for clinical importance were applied. Results Of 1333 eligible survivors, 895 participated (67%). Median age was 64 years (range, 21–84), and median time since transplantation was 7 years (range, 0–44). Participants reported a mean of 18 concurrent symptoms, including 8 of moderate-to-high severity; only 1% reported none. Negative health outlook (93%) and fatigue (90%) were the most prevalent late effects. Overall, 91% reported low or moderate sexual functioning, and sexual problems showed the highest severity. Among participants aged ≤67 years, 45% were not working, and loss of income was reported by 54% overall. Participants reported poorer HRQOL than population reference values, and 38% exceeded thresholds for clinical importance in at least 5 domains. Conclusion Allo-HCT survivorship is characterized by multiple concurrent symptoms and impairments, demonstrating a substantial population-level burden with implications for long-term survivorship care. Registration: ClinicalTrials.gov, NCT06277479.