title: Haematopoietic stem cell transplantation survivorship and quality of life: is it a small world after all?
abstract: 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.
authors.affiliation: Department of Haematology, Royal North Shore Hospital, Sydney, NSW, Australia. lisajanebrice@yahoo.com.
authors.forename: Lisa
authors.initials: L
authors.lastname: Brice
authors.affiliation: Blood and Marrow Transplant Network, New South Wales Agency for Clinical Innovation, Sydney, NSW, Australia.
authors.forename: Nicole
authors.initials: N
authors.lastname: Gilroy
authors.affiliation: Blood and Marrow Transplant Network, New South Wales Agency for Clinical Innovation, Sydney, NSW, Australia.|Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, NSW, Australia.
authors.forename: Gemma
authors.initials: G
authors.lastname: Dyer
authors.affiliation: Westmead Breast Cancer Institute, Sydney, NSW, Australia.
authors.forename: Masura
authors.initials: M
authors.lastname: Kabir
authors.affiliation: Department of Haematology, Royal North Shore Hospital, Sydney, NSW, Australia.|Northern Blood Research Centre, Kolling Institute, University of Sydney, Sydney, NSW, Australia.
authors.forename: Matt
authors.initials: M
authors.lastname: Greenwood
authors.affiliation: Department of Haematology, Royal Prince Alfred Hospital, Sydney, NSW, Australia.
authors.forename: Stephen
authors.initials: S
authors.lastname: Larsen
authors.affiliation: Department of Haematology, St Vincent's Hospital, Sydney, NSW, Australia.
authors.forename: John
authors.initials: J
authors.lastname: Moore
authors.affiliation: Department of Haematology, Westmead Hospital, Sydney, NSW, Australia.
authors.forename: John
authors.initials: J
authors.lastname: Kwan
authors.affiliation: Department of Haematology, Prince of Wales Hospital, Sydney, NSW, Australia.
authors.forename: Mark
authors.initials: M
authors.lastname: Hertzberg
authors.affiliation: Calvary Mater Hospital, Newcastle, NSW, Australia.
authors.forename: Louisa
authors.initials: L
authors.lastname: Brown
authors.affiliation: Department of Haematology, Westmead Hospital, Sydney, NSW, Australia.
authors.forename: Megan
authors.initials: M
authors.lastname: Hogg
authors.affiliation: Department of Haematology, Westmead Hospital, Sydney, NSW, Australia.
authors.forename: Gillian
authors.initials: G
authors.lastname: Huang
authors.affiliation: Department of Haematology, St Vincent's Hospital, Sydney, NSW, Australia.
authors.forename: Jeff
authors.initials: J
authors.lastname: Tan
authors.affiliation: Department of Haematology, Royal North Shore Hospital, Sydney, NSW, Australia.|Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, NSW, Australia.|Northern Blood Research Centre, Kolling Institute, University of Sydney, Sydney, NSW, Australia.
authors.forename: Christopher
authors.initials: C
authors.lastname: Ward
authors.affiliation: Department of Haematology, Westmead Hospital, Sydney, NSW, Australia.
authors.forename: David
authors.initials: D
authors.lastname: Gottlieb
authors.affiliation: Department of Haematology, Royal North Shore Hospital, Sydney, NSW, Australia.|Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, NSW, Australia.|Northern Blood Research Centre, Kolling Institute, University of Sydney, Sydney, NSW, Australia.
authors.forename: Ian
authors.initials: I
authors.lastname: Kerridge
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000379:methods* / Q000401:mortality; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000401:mortality / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires; D015996:Survival Rate; D017741:Survivors; D019172:Transplantation Conditioning / Q000379:methods* / Q000401:mortality; D055815:Young Adult
keywords: Bone marrow transplantation; Cancer; Haematopoietic stem cell transplantation; Quality of life