Patient-reported outcomes in chronic GVHD: instruments, clinical utility, and survivorship integration

Abstract Chronic graft-versus-host disease (cGVHD) is a leading driver of long-term morbidity after allogeneic transplantation. This review synthesizes evidence on patient-reported outcomes (PROs) across organ systems and survivorship domains, appraises psychometrics and minimal clinically important differences (MCIDs), and translates measures into routine care. Validated tools—including the Lee Symptom Scale (LSS), FACT-BMT, SF-36, PROMIS, and pediatric instruments—capture symptom burden and function beyond clinician ratings, and studies have demonstrated associations of some measures with survival, failure-free survival, and non-relapse mortality. Concordance between provider-rated and PRO-defined responses is limited, while PRO changes often track clinically meaningful improvement. We propose an implementation framework and two practical tables mapping measures to organ involvement and use-cases. Key barriers include workflow integration, patient burden, and cross-cultural adaptation-gaps that are pronounced in Chinese cohorts. Embedding PROs in trials and survivorship models can sharpen risk stratification, inform shared decisions, and improve patient-centered outcomes in cGVHD.