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

• Published in: Supportive care in cancer 2017-02, Vol.25 (2), p.421-427
• Main Authors: Brice, Lisa, Gilroy, Nicole, Dyer, Gemma, Kabir, Masura, Greenwood, Matt, Larsen, Stephen, Moore, John, Kwan, John, Hertzberg, Mark, Brown, Louisa, Hogg, Megan, Huang, Gillian, Tan, Jeff, Ward, Christopher, Gottlieb, David, Kerridge, Ian
• Format: Article
• Language: English
• Subjects: Activities of daily living; Adult; Aged; Aged, 80 and over; Bone marrow; Cancer; Female; Hematopoietic stem cell transplantation; Hematopoietic Stem Cell Transplantation - methods; Hematopoietic Stem Cell Transplantation - mortality; Humans; Male; Medicine; Medicine & Public Health; Middle Aged; Neoplasms - mortality; Neoplasms - psychology; Nursing; Nursing Research; Oncology; Original Article; Pain Medicine; Qualitative research; Quality of life; Quality of Life - psychology; Rehabilitation Medicine; Stem cells; Surveys; Surveys and Questionnaires; Survival Rate; Survivors; Transplantation Conditioning - methods; Transplantation Conditioning - mortality; Transplants & implants; Young Adult
• ISSN: 0941-4355; 1433-7339
• DOI: 10.1007/s00520-016-3418-5

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.