Hematopoietic stem cell transplantation, survivorship and quality of life : Is it a small world after all?  — ASN Events
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Hematopoietic stem cell transplantation, survivorship and quality of life : Is it a small world after all?  (#173)

Lisa Brice 1 , Nicole Gilroy 2 , Gemma Dyer 2 3 , Masura Kabbir 4 , Matthew Greenwood 1 5 , Stephen Larsen 6 , John Moore 7 , Mark Hertzberg 8 , John Kwan 8 , Louisa Brown 9 , Megan Hogg , Gillian Huang 8 , Jeff Tan 7 , Chris Ward 1 5 , Ian Kerridge 1 5
  1. Royal North Shore Hospital, St Leonards, NSW, Australia
  2. Blood and Marrow Transplant Network, NSW Agency for Clinical Innovation, Sydney, NSW, Australia
  3. Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, NSW, Australia
  4. Westmead Breast Cancer Institute, Sydney, NSW, Australia
  5. Northern Blood Research Centre, Kolling Institute, University of Sydney, Sydney, NSW, Australia
  6. Department of Haematology, Royal Prince Alfred Hospital, Sydney, NSW, Australia
  7. Department of Haematology, St Vincents Hospital, Sydney, NSW, Australia
  8. Department of Haematology, Westmead Hospital, Sydney, NSW, Australia
  9. Department of Haematology, Newcastle Mater Hospital, Sydney, NSW, Australia

Abstract

Aims: Our objective with this qualitative paper was to seek insight into the beliefs thoughts and attitudes of Hematopoietic Stem Cell Transplant (HSCT) survivors regarding their Quality of Life (QoL), in order to better understand their perspective and experiences.

Method: Participants included 445 patients who had undergone HSCT for a malignant or non-malignant disease, between 2000 and 2012, in one of four major hospitals in Australia. Data was obtained by positing a single open-ended question asking respondents to list the three issues of greatest importance to their QoL in survivorship. Responses to the QoL question were uploaded into NVivo software and substantiating quotes were analysed and organized into QoL themes and subthemes encompassed by physical, psychological, social or spiritual domains.

Results: While some recipients reported relatively good QoL post HSCT, others struggled with pervasive and unrelenting side effects. The overwhelming theme evident in the responses of those struggling with QoL challenges were that the patient’s world and opportunities had diminished compared to the unhindered and expansive nature of life prior to disease and HSCT. Major themes identified included: 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.

Conclusions: Obtaining qualitative information on QoL in HSCT survivors may provide more information on a concept that is ill defined and poorly understood. This information can also be used to address gaps in service provision and to provide better information to health providers, and consequently, those undergoing HSCT.

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