Patient-Reported Outcomes in Hematopoietic Stem Cell Transplant Recipients: Design, Implementation, and Pilot Results

Abstract

Background: Patient-reported outcome measures (PROMs) offer a collaborative opportunity between the patient and the care team to improve the quality of care. Objectives: To define PROMs in patients receiving hematopoietic stem cell transplant (HSCT), a pre-visit questionnaire (PVQ) was developed, which included a single agenda-setting question, the PROMIS-29 survey, and the National Comprehensive Cancer Network (NCCN) Distress Thermometer (DT). Study Design: Patients completed the PVQ 1 month prior to transplant (baseline) and at 1, 3, 6, and 12 months following transplant. Results: Sixty-five patients (n = 27 allogenic; n = 38 autologous) participated. Survey completion rates were 95% at 1 month post-transplant, 74% at 6 months, and 65% at one year. One month following transplant, patients’ fatigue (P < .001) increased, while physical (P < .001) and social (P < .001) functions decreased. Each returned to baseline at 3 months (P < .001). Fatigue was more pronounced in allogeneic recipients (P = .017) and autologous recipients recovered physical function much sooner (P = .021). Conclusions: This study confirms the feasibility of capturing PROMs longitudinally in patients receiving HSCT and demonstrates significant changes in fatigue and physical and social functioning following transplant.