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Quality of Life

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

Bone Marrow Transplantation volume 49, pages 299–303 (2014)Cite this article

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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.

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Acknowledgements

This work was supported in part by NIH K07-CA138499 (PI: Jim), the Miles for Moffitt Milestone Award (PI: Jim) and American Cancer Society MRSG-11-149-01-LIB (PI: Pidala). We acknowledge the Moffitt Survey Methods Core for their assistance with data management.

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Authors and Affiliations

  1. Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, FL, USA

    H S L Jim, G P Quinn, C K Gwede, M G Cases, A Barata, J Christie, L Gonzalez & A Koskan

  2. Psychiatry and Legal Medicine PhD Program, Universitat Autònoma de Barcelona, Barcelona, Spain

    A Barata

  3. Department of Psychology, University of South Florida, Tampa, FL, USA

    J Cessna

  4. Department of Blood and Marrow Transplantation, Moffitt Cancer Center, Tampa, FL, USA

    J Pidala

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  1. H S L Jim
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Correspondence to H S L Jim.

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Jim, H., Quinn, G., Gwede, C. et al. Patient education in allogeneic hematopoietic cell transplant: what patients wish they had known about quality of life. Bone Marrow Transplant 49, 299–303 (2014). https://doi.org/10.1038/bmt.2013.158

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