title: 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 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.
authors.affiliation: Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, FL, USA.
authors.forename: H S L
authors.initials: HS
authors.lastname: Jim
authors.affiliation: Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, FL, USA.
authors.forename: G P
authors.initials: GP
authors.lastname: Quinn
authors.affiliation: Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, FL, USA.
authors.forename: C K
authors.initials: CK
authors.lastname: Gwede
authors.affiliation: Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, FL, USA.
authors.forename: M G
authors.initials: MG
authors.lastname: Cases
authors.affiliation: 1] Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, FL, USA [2] Psychiatry and Legal Medicine PhD Program, Universitat Autònoma de Barcelona, Barcelona, Spain.
authors.forename: A
authors.initials: A
authors.lastname: Barata
authors.affiliation: Department of Psychology, University of South Florida, Tampa, FL, USA.
authors.forename: J
authors.initials: J
authors.lastname: Cessna
authors.affiliation: Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, FL, USA.
authors.forename: J
authors.initials: J
authors.lastname: Christie
authors.affiliation: Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, FL, USA.
authors.forename: L
authors.initials: L
authors.lastname: Gonzalez
authors.affiliation: Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, FL, USA.
authors.forename: A
authors.initials: A
authors.lastname: Koskan
authors.affiliation: Department of Blood and Marrow Transplantation, Moffitt Cancer Center, Tampa, FL, USA.
authors.forename: J
authors.initials: J
authors.lastname: Pidala
mesh_terms: D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000379:methods / Q000523:psychology*; D006801:Humans; D008297:Male; D010353:Patient Education as Topic / Q000941:ethics / Q000379:methods* / Q000592:standards; D011788:Quality of Life; D019172:Transplantation Conditioning / Q000379:methods / Q000523:psychology*; D014184:Transplantation, Homologous