title: What They Want: Inclusion of Blood and Marrow Transplantation Survivor Preference in the Development of Models of Care for Long-Term Health in Sydney, Australia.
abstract: Four hundred forty-one adult allogeneic blood and marrow transplantation (BMT) survivors participated in a cross-sectional survey to assess long-term follow-up (LTFU) model of care preference. Survey instruments included the Sydney Post BMT Survey, Functional Assessment of Cancer Therapy-BMT, Depression Anxiety Stress Scales 21, the Chronic GVHD Activity Assessment-Patient Self Report (Form B), the Lee Chronic GVHD Symptom Scale and the Post-Traumatic Growth Inventory. We found most BMT survivors (74%) would prefer LTFU with their transplantation physicians alone or in combination with transplantation center-linked services (satellite clinics or telemedicine) Over one-quarter indicated a preference for receiving comprehensive post-transplantation care in a "satellite" clinic staffed by their BMT team situated closer to their place of residence, with higher income, higher educational level, and sexual morbidity being significant social factors influencing this preference. Regular exercise was reported less often in those who preferred telemedicine, which may reflect reduced mobility. The factor most strongly associated with a preference for transplantation center follow-up was the severity of chronic graft-versus-host disease. Full- and part-time work were negatively associated with transplantation center follow-up, possibly implying decreased dependency on the center and some return to normalcy. This study is the first to explore the preferences of BMT survivors for long-term post-transplantation care. These data provides the basis for LTFU model of care development and health service reform consistent with the preferences of BMT survivors.
authors.affiliation: Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, New South Wales, Australia; Blood and Marrow Transplant Network, New South Wales Agency for Clinical Innovation, Sydney, New South Wales, Australia. Electronic address: gem.dyer@gmail.com.
authors.forename: Gemma
authors.initials: G
authors.lastname: Dyer
authors.affiliation: Blood and Marrow Transplant Network, New South Wales Agency for Clinical Innovation, Sydney, New South Wales, Australia.
authors.forename: Nicole
authors.initials: N
authors.lastname: Gilroy
authors.affiliation: Department of Haematology, Calvary Mater Newcastle, NSW, Australia.
authors.forename: Louisa
authors.initials: L
authors.lastname: Brown
authors.affiliation: Department of Haematoloy, Westmead Hospital, Sydney, New South Wales, Australia.
authors.forename: Megan
authors.initials: M
authors.lastname: Hogg
authors.affiliation: Department of Haematology, Royal North Shore Hospital, Sydney, New South Wales, Australia.
authors.forename: Lisa
authors.initials: L
authors.lastname: Brice
authors.affiliation: Westmead Breast Cancer Institute, Sydney, New South Wales, Australia.
authors.forename: Masura
authors.initials: M
authors.lastname: Kabir
authors.affiliation: Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, New South Wales, Australia; Department of Haematology, Royal North Shore Hospital, Sydney, New South Wales, Australia; Northern Blood Research Centre, Kolling Institute, University of Sydney, New South Wales, Australia.
authors.forename: Matt
authors.initials: M
authors.lastname: Greenwood
authors.affiliation: Institute of Haematology, Royal Prince Alfred Hospital, Sydney, New South Wales, Australia.
authors.forename: Stephen R
authors.initials: SR
authors.lastname: Larsen
authors.affiliation: Department of Haematology, St. Vincents Hospital, Sydney, New South Wales, Australia.
authors.forename: John
authors.initials: J
authors.lastname: Moore
authors.affiliation: Department of Haematology, Prince of Wales Hospital, Sydney, New South Wales, Australia.
authors.forename: Mark
authors.initials: M
authors.lastname: Hertzberg
authors.affiliation: Department of Haematoloy, Westmead Hospital, Sydney, New South Wales, Australia.
authors.forename: John
authors.initials: J
authors.lastname: Kwan
authors.affiliation: Department of Haematoloy, Westmead Hospital, Sydney, New South Wales, Australia.
authors.forename: Gillian
authors.initials: G
authors.lastname: Huang
authors.affiliation: Department of Haematology, St. Vincents Hospital, Sydney, New South Wales, Australia.
authors.forename: Jeff
authors.initials: J
authors.lastname: Tan
authors.affiliation: Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, New South Wales, Australia; Department of Haematology, Royal North Shore Hospital, Sydney, New South Wales, Australia; Northern Blood Research Centre, Kolling Institute, University of Sydney, New South Wales, Australia.
authors.forename: Christopher
authors.initials: C
authors.lastname: Ward
authors.affiliation: Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, New South Wales, Australia; Department of Haematology, Royal North Shore Hospital, Sydney, New South Wales, Australia; Northern Blood Research Centre, Kolling Institute, University of Sydney, New South Wales, Australia.
authors.forename: Ian
authors.initials: I
authors.lastname: Kerridge
mesh_terms: D000328:Adult; D000368:Aged; D001315:Australia; D016026:Bone Marrow Transplantation; D002908:Chronic Disease; D003430:Cross-Sectional Studies; D005260:Female; D005500:Follow-Up Studies; D006086:Graft vs Host Disease / Q000473:pathology / Q000523:psychology* / Q000628:therapy; D018380:Hematopoietic Stem Cell Transplantation; D006801:Humans; D007938:Leukemia / Q000473:pathology / Q000523:psychology* / Q000628:therapy; D008134:Long-Term Care / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction / Q000706:statistics & numerical data; D010817:Physician-Patient Relations; D011788:Quality of Life; D012959:Socioeconomic Factors; D017741:Survivors / Q000523:psychology*; D017216:Telemedicine; D014184:Transplantation, Homologous
keywords: Allogeneic transplantation; Long-term follow-up; Model of care; Survivor preference; Survivorship