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

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.