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Supportive Care in Cancer
Published in: Supportive Care in Cancer 2/2017

01-02-2017 | Original Article

Haematopoietic stem cell transplantation survivorship and quality of life: is it a small world after all?

Authors: Lisa Brice, Nicole Gilroy, Gemma Dyer, Masura Kabir, Matt Greenwood, Stephen Larsen, John Moore, John Kwan, Mark Hertzberg, Louisa Brown, Megan Hogg, Gillian Huang, Jeff Tan, Christopher Ward, David Gottlieb, Ian Kerridge

Published in: Supportive Care in Cancer | Issue 2/2017

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Abstract

Purpose

The aim of this qualitative study was to gain a rich understanding of the impact that haematopoietic stem cell transplantation (HSCT) has on long-term survivor’s quality of life (QoL).

Method

Participants included 441 survivors who had undergone HSCT for a malignant or non-malignant disease. Data were obtained by a questionnaire positing a single open-ended question asking respondents to list the three issues of greatest importance to their QoL in survivorship. Responses were analysed and organised into QoL themes and subthemes.

Results

Major themes identified included the following: the failing body and diminished physical effectiveness, the changed mind, the loss of social connectedness, the loss of the functional self and the patient for life. Each of these themes manifests different ways in which HSCT survivor’s world and opportunities had diminished compared to the unhindered and expansive life that they enjoyed prior to the onset of disease and subsequent HSCT.

Conclusions

HSCT has a profound and pervasive impact on the life of survivors—reducing their horizons and shrinking various parts of their worlds. While HSCT survivors can describe the ways in which their life has changed, many of their fears, anxieties, regrets and concerns are existential in nature and are ill-defined—making it exceeding unlikely that they would be adequately captured by standard psychometric measures of QoL post HSCT.
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Metadata
Title
Haematopoietic stem cell transplantation survivorship and quality of life: is it a small world after all?
Authors
Lisa Brice
Nicole Gilroy
Gemma Dyer
Masura Kabir
Matt Greenwood
Stephen Larsen
John Moore
John Kwan
Mark Hertzberg
Louisa Brown
Megan Hogg
Gillian Huang
Jeff Tan
Christopher Ward
David Gottlieb
Ian Kerridge
Publication date
01-02-2017
Publisher
Springer Berlin Heidelberg
Published in
Supportive Care in Cancer / Issue 2/2017
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-016-3418-5

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