Longitudinal Health-Related Values Discussions for Patients Undergoing Hematopoietic Stem Cell Transplant: Do Values Change Over Time?

Purpose: Hematopoietic stem cell transplant (HSCT) for patients with hematologic malignancies (HM) is associated with significant morbidity. Patients who undergo HSCT benefit from receiving palliative care that addresses their health-related values (HRV). We previously reported results of a pilot study incorporating repeated HRV discussions for patients undergoing HSCT and now aim to explore how patients' values may change throughout the transplant course. Methods: Consecutive patients with HM receiving HSCT were approached for enrollment. Patients' HRV (e.g. personhood, sources of strength, concerns about the future) were assessed using a structured guide and repeated at clinically significant milestones during the transplant course (pre-transplant, Day 10-14, Day 30, Day 100, 6 months, and 1-year). Values discussions were analyzed using qualitative content analysis and transitions (changes in value hierarchy) were identified for individual patients and across treatment subgroups. Results: 31 patients enrolled in the study and participated in 149 discussions. There was little change in personhood. Patients expressed the most changes in their values early in the transplant course (day 10-14 and 30); sources of strength and their meaning of living well were the most variable. Conclusion: Patients with HM undergoing HSCT experience some transitions in their HRV during the first year after transplant. This study suggests that patients may experience changes in the ways that they understand, prioritize, and reflect on their values in response to a HM diagnosis and its treatment. Person-centered communication should be an iterative process to allow for alignment of decision-making with patients' values.