Quality of Life Following Allogeneic Hematopoietic CELL Transplant: WHAT Patients Wish They HAD Known

BACKGROUND:  Quality of life is increasingly recognized as one of patients’ primary concerns and an important clinical endpoint of hematopoietic cell transplant (HCT).  Although a growing body of research has examined change in quality of life during the transplant process, the extent to which these data have been incorporated into patient education is unclear.  The goal of the current study was to examine education regarding post-HCT quality of life from the patient’s perspective.

METHODS:  Men and women who had received allogeneic HCT two to four years previously participated in one of four qualitative focus groups based on a semi-structured interview guide.  Participants were asked to recall what they had been told about post-HCT quality of life as they were deciding to undergo the transplant, how their current quality of life differed from what they expected, and how to best educate future HCT recipients about quality of life.  Verbatim transcripts were coded for a priori and emergent themes using content analysis.

RESULTS:  A total of 24 patients participated (54% female, mean age 51, range 23-73).  Regarding patient education, most participants noted that they had been told about potential side effects of HCT and behavioral and dietary restrictions, but little about quality of life.  Many reported actively trying to avoid information about HCT pre-transplant and instead focused on surviving the procedure.  Participants often reported that their post-HCT quality of life fluctuated, which was contrary to their expectations regarding sustained improvement.  Participants widely agreed that patient education regarding quality of life should occur throughout the transplant process.  They emphasized that the ability to control the amount of information was important, as was hearing about quality of life from other patients.

CONCLUSIONS:  These data suggest that patient education regarding post-HCT quality of life could be improved.  Educational materials that are tailored to patients’ information preferences, can be used throughout transplant and survivorship, and feature other HCT recipients are preferred.