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

• Published in: Bone marrow transplantation (Basingstoke) Vol. 49; no. 2; pp. 299 - 303
• Main Authors: Jim, H S L, Quinn, G P, Gwede, C K, Cases, M G, Barata, A, Cessna, J, Christie, J, Gonzalez, L, Koskan, A, Pidala, J
• Format: Journal Article
• Language: English
• Published: London Nature Publishing Group UK 01.02.2014; Nature Publishing Group
• Subjects: 631/250/1904; 692/700/1719; 692/700/784; Anesthesia. Intensive care medicine. Transfusions. Cell therapy and gene therapy; Biological and medical sciences; Bone marrow; Bone marrow, stem cells transplantation. Graft versus host reaction; Cell Biology; Complications; Content analysis; Education; Female; Hematology; Hematopoietic Stem Cell Transplantation - methods; Hematopoietic Stem Cell Transplantation - psychology; Hematopoietic stem cells; Humans; Internal Medicine; Male; Medical sciences; Medicine; Medicine & Public Health; original-article; Patient education; Patient Education as Topic - ethics; Patient Education as Topic - methods; Patient Education as Topic - standards; Patients; Public Health; Quality of Life; Stem cell research; Stem cell transplantation; Stem Cells; Transfusions. Complications. Transfusion reactions. Cell and gene therapy; Transplantation; Transplantation Conditioning - methods; Transplantation Conditioning - psychology; Transplantation, Homologous; Transplants & implants; United States; hematopoietic SCT; patient education as topic; quality of life; Human; Patient education; Hematology; Stem cell; Hematopoietic cell; Homograft; Hematopoietic stem cell transplantation; Quality of life
• ISSN: 0268-3369; 1476-5365
• DOI: 10.1038/bmt.2013.158

Quality of life (QOL) is increasingly recognized as an important clinical outcome of hematopoietic cell transplantation (HCT), but patient education is often overlooked. The aim 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 years). 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.