Patient education in allogeneic hematopoietic cell transplant: what patients wish they had known about quality of life

Abstract

Quality of life (QOL) is increasingly recognized as an important clinical outcome of hematopoietic cell transplantation (HCT), but patient education is often overlooked. The goal of the current qualitative study was to examine education regarding post-HCT QOL from the patient’s perspective. Allogeneic HCT recipients participated in one of four focus groups. Participants were asked to recall what they had been told about post-HCT QOL as they were preparing for transplant, how their QOL differed from what they expected, and how to educate future patients about post-HCT QOL. Verbatim transcripts were coded for both a priori and emergent themes using content analysis. A total of 24 patients participated (54% female, mean age 51, range 23-73). Participants frequently expressed the desire for additional education regarding post-HCT QOL, particularly late complications. They noted that late complications were often unexpected, had a profound impact on their QOL, and threatened their ongoing sense of recovery. They emphasized that the timing, content, and format of education regarding QOL should be flexible to meet their diverse needs. Findings from the current study draw attention to the importance of patient education regarding post-HCT QOL as well as additional QOL research designed with patient education in mind.

Caregivers’ quality of life after blood and marrow transplantation: a qualitative study

“…Caregiver support groups are available as well. Results of the patient focus groups have been reported previously (5). Caregivers were asked about their quality of life and their perceptions of the patient’s quality of life, with a focus on how the transplant team could better prepare future caregivers for life after transplant.…”

Adult Acute Myeloid Leukemia Long-Term Survivors

“…Further QOL studies can also better tailor patient/caregiver education programs. For example, focus groups exploring what post allogeneic transplant patients wish they had known about quality of life prior to transplant found majority of suggestions centered on education of late transplant complications (20). In general, long-term prospective follow-up studies of this population will be able to provide much needed information.…”

Process of allogeneic hematopoietic cell transplantation decision making for older adults

“…Although the majority indicated additional information would not have changed their decision, some participants reported they would have decided against transplant if they had known their caregiver's and their own QOL outcome. 41 …”

“…42 Some patients find it helpful to speak with a peer who has gone through transplant. 41 The survivor can share their experience and what helped them. However, it must be acknowledged that these survivors are a biased sample, as they are the ones with the best outcomes, not the ones who died or who live with significant morbidity.…”

“…Also, for survivors, QOL may simply mean that they are alive. 35,41 In a focus group study, patients and caregivers agreed presenting a range of possible QOL outcomes was an important part of the decision process. Although the majority indicated additional information would not have changed their decision, some participants reported they would have decided against transplant if they had known their caregiver's and their own QOL outcome.…”