4.6 Article

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

期刊

SUPPORTIVE CARE IN CANCER
卷 25, 期 2, 页码 421-427

出版社

SPRINGER
DOI: 10.1007/s00520-016-3418-5

关键词

Quality of life; Bone marrow transplantation; Haematopoietic stem cell transplantation; Cancer

资金

  1. New South Wales Agency for Clinical Innovation/NSW Blood and Marrow Transplant Network
  2. Northern Blood Research Centre

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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). 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. 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. 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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