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Haematopoietic stem cell transplantation survivorship and quality of life: is it a small world after all?
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.
Afiliación
  • Brice L; Department of Haematology, Royal North Shore Hospital, Sydney, NSW, Australia. lisajanebrice@yahoo.com.
  • Gilroy N; Blood and Marrow Transplant Network, New South Wales Agency for Clinical Innovation, Sydney, NSW, Australia.
  • Dyer G; Blood and Marrow Transplant Network, New South Wales Agency for Clinical Innovation, Sydney, NSW, Australia.
  • Kabir M; Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, NSW, Australia.
  • Greenwood M; Westmead Breast Cancer Institute, Sydney, NSW, Australia.
  • Larsen S; Department of Haematology, Royal North Shore Hospital, Sydney, NSW, Australia.
  • Moore J; Northern Blood Research Centre, Kolling Institute, University of Sydney, Sydney, NSW, Australia.
  • Kwan J; Department of Haematology, Royal Prince Alfred Hospital, Sydney, NSW, Australia.
  • Hertzberg M; Department of Haematology, St Vincent's Hospital, Sydney, NSW, Australia.
  • Brown L; Department of Haematology, Westmead Hospital, Sydney, NSW, Australia.
  • Hogg M; Department of Haematology, Prince of Wales Hospital, Sydney, NSW, Australia.
  • Huang G; Calvary Mater Hospital, Newcastle, NSW, Australia.
  • Tan J; Department of Haematology, Westmead Hospital, Sydney, NSW, Australia.
  • Ward C; Department of Haematology, Westmead Hospital, Sydney, NSW, Australia.
  • Gottlieb D; Department of Haematology, St Vincent's Hospital, Sydney, NSW, Australia.
  • Kerridge I; Department of Haematology, Royal North Shore Hospital, Sydney, NSW, Australia.
Support Care Cancer ; 25(2): 421-427, 2017 02.
Article en En | MEDLINE | ID: mdl-27699502
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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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Trasplante de Células Madre Hematopoyéticas / Acondicionamiento Pretrasplante / Neoplasias Tipo de estudio: Qualitative_research Aspecto: Patient_preference Límite: Adult / Aged / Aged80 / Female / Humans / Male / Middle aged Idioma: En Revista: Support Care Cancer Asunto de la revista: NEOPLASIAS / SERVICOS DE SAUDE Año: 2017 Tipo del documento: Article País de afiliación: Australia Pais de publicación: Alemania
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Trasplante de Células Madre Hematopoyéticas / Acondicionamiento Pretrasplante / Neoplasias Tipo de estudio: Qualitative_research Aspecto: Patient_preference Límite: Adult / Aged / Aged80 / Female / Humans / Male / Middle aged Idioma: En Revista: Support Care Cancer Asunto de la revista: NEOPLASIAS / SERVICOS DE SAUDE Año: 2017 Tipo del documento: Article País de afiliación: Australia Pais de publicación: Alemania