title: The experience of survival following allogeneic haematopoietic stem cell transplantation in New South Wales, Australia.
abstract: Allogeneic haematopoietic stem cell transplantation (allo-HSCT) entails long-term morbidities that impair survivors' quality of life through broad physical and psychosocial sequelae. Current data and survival measurements may be inadequate for contemporary Australian allo-HSCT recipients. This study sought to comprehensively describe survivorship in an up-to-date, local setting through validated measurements and a novel questionnaire designed to complement and address limitations of current instruments. All adults who received an allo-HSCT between 2000 and 2012 in New South Wales were eligible and included, if alive, those literate and consenting to the study, which encompassed seven survey instruments. Four hundred and forty-three survivors participated, which is 76% of contactable (n=583) and 66% of eligible survivors (n= 669). Chronic GVHD (cGVHD) and co-morbidity rates were similar to published data. Noteworthy results include prevalent sexual dysfunction (66% females, 52% males), loss of income (low income increased from 21 to 36%, P<0.001) and employment (full-time employment fell from 64 to 33%, P<0.001), suboptimal vaccination (31% complete), and health screening (≈50%). Risk factors for poor vaccination and health screening were cGVHD, younger age, less education, rural/regional residence and transplantation <2 years. This study suggests that improvement in survivorship may necessitate structural changes in the current delivery of health services.
authors.affiliation: Northern Blood Research Centre, Kolling Institute, University of Sydney, Sydney, NSW, Australia.|Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, NSW, Australia.|Department of Haematology, Royal North Shore Hospital, Sydney, NSW, Australia.
authors.forename: G
authors.initials: G
authors.lastname: Gifford
authors.affiliation: Blood and Marrow Transplant Network, New South Wales Agency for Clinical Innovation, Sydney, NSW, Australia.
authors.forename: N
authors.initials: N
authors.lastname: Gilroy
authors.affiliation: Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, NSW, Australia.|Blood and Marrow Transplant Network, New South Wales Agency for Clinical Innovation, Sydney, NSW, Australia.
authors.forename: G
authors.initials: G
authors.lastname: Dyer
authors.affiliation: Department of Haematology, Royal North Shore Hospital, Sydney, NSW, Australia.
authors.forename: L
authors.initials: L
authors.lastname: Brice
authors.affiliation: Westmead Breast Cancer Institute, Sydney, NSW, Australia.
authors.forename: M
authors.initials: M
authors.lastname: Kabir
authors.affiliation: Northern Blood Research Centre, Kolling Institute, University of Sydney, Sydney, NSW, Australia.|Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, NSW, Australia.|Department of Haematology, Royal North Shore Hospital, Sydney, NSW, Australia.
authors.forename: M
authors.initials: M
authors.lastname: Greenwood
authors.affiliation: Institute of Haematology, Royal Prince Alfred Hospital, Sydney, NSW, Australia.
authors.forename: S
authors.initials: S
authors.lastname: Larsen
authors.affiliation: Department of Haematology, St Vincents Hospital, Sydney, NSW, Australia.
authors.forename: J
authors.initials: J
authors.lastname: Moore
authors.affiliation: Department of Haematoloy, Westmead Hospital, Sydney, NSW, Australia.
authors.forename: D
authors.initials: D
authors.lastname: Gottlieb
authors.affiliation: Department of Haematology, Prince of Wales Hospital, Sydney, NSW, Australia.
authors.forename: M
authors.initials: M
authors.lastname: Hertzberg
authors.affiliation: Department of Haematoloy, Westmead Hospital, Sydney, NSW, Australia.
authors.forename: J
authors.initials: J
authors.lastname: Kwan
authors.affiliation: Department of Haematoloy, Westmead Hospital, Sydney, NSW, Australia.
authors.forename: G
authors.initials: G
authors.lastname: Huang
authors.affiliation: Department of Haematology, St Vincents Hospital, Sydney, NSW, Australia.
authors.forename: J
authors.initials: J
authors.lastname: Tan
authors.affiliation: Department of Haematology, Calvary Mater Hospital, Newcastle, NSW, Australia.
authors.forename: L
authors.initials: L
authors.lastname: Brown
authors.affiliation: Department of Haematoloy, Westmead Hospital, Sydney, NSW, Australia.
authors.forename: M
authors.initials: M
authors.lastname: Hogg
authors.affiliation: Northern Blood Research Centre, Kolling Institute, University of Sydney, Sydney, NSW, Australia.|Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, NSW, Australia.|Department of Haematology, Royal North Shore Hospital, Sydney, NSW, Australia.
authors.forename: C
authors.initials: C
authors.lastname: Ward
authors.affiliation: Northern Blood Research Centre, Kolling Institute, University of Sydney, Sydney, NSW, Australia.|Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, NSW, Australia.|Department of Haematology, Royal North Shore Hospital, Sydney, NSW, Australia.
authors.forename: I
authors.initials: I
authors.lastname: Kerridge
mesh_terms: D000328:Adult; D000368:Aged; D003695:Delivery of Health Care / Q000592:standards; D005260:Female; D006086:Graft vs Host Disease; D018380:Hematopoietic Stem Cell Transplantation / Q000009:adverse effects / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D009517:New South Wales; D011788:Quality of Life; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*; D014184:Transplantation, Homologous; D055815:Young Adult