Gemma McErlean1,2,3,4, Lisa Brice5, Nicole Gilroy6,7, Masura Kabir8, Matt Greenwood5,9, Stephen R Larsen10, John Moore11, David Gottlieb12,13, Mark Hertzberg14, Louisa Brown15, Megan Hogg12, Gillian Huang12, Christopher Ward5,9,13, Ian Kerridge5,9,13. 1. School of Nursing, Faculty of Science, Medicine and Health, University of Wollongong, Wollongong, NSW, Australia. gmcerlean@uow.edu.au. 2. Cancer Services, South Western Sydney Local Health District, Sydney, NSW, Australia. gmcerlean@uow.edu.au. 3. Centre for Applied Nursing Research and Ingham Institute of Applied Medical Research, Sydney, NSW, Australia. gmcerlean@uow.edu.au. 4. Blood and Marrow Transplant Network, New South Wales Agency for Clinical Innovation, Sydney, NSW, Australia. gmcerlean@uow.edu.au. 5. Department of Haematology, Royal North Shore Hospital, Sydney, NSW, Australia. 6. Blood and Marrow Transplant Network, New South Wales Agency for Clinical Innovation, Sydney, NSW, Australia. 7. Centre for Infectious Diseases and Microbiology, Westmead Hospital, Sydney, NSW, Australia. 8. Westmead Breast Cancer Institute, Sydney, NSW, Australia. 9. Northern Blood Research Centre, Kolling Institute, University of Sydney, Sydney, NSW, Australia. 10. Institute of Haematology, Royal Prince Alfred Hospital, Sydney, NSW, Australia. 11. Department of Haematology, St Vincents Hospital, Sydney, NSW, Australia. 12. Department of Haematology, Westmead Hospital, Sydney, NSW, Australia. 13. Faculty of Medicine and Health Sciences, University of Sydney, Sydney, NSW, Australia. 14. Department of Haematology, Prince of Wales Hospital, Randwick, NSW, Australia. 15. Department of Haematology, Calvary Mater Hospital, Newcastle, NSW, Australia.
Abstract
BACKGROUND: Allogenic blood and marrow transplant (allo-BMT) is an arduous treatment used increasingly for many life-threatening conditions. Recognition of the profound impacts of the long term and late effects is ever-growing, as is the healthcare workload (treatment burden) of survivorship. PURPOSE: To quantify the treatment burden of long-term survival following allo-BMT, regarding the range of health services, therapies and investigations accessed by survivors. METHODS: A large, multi-centre cross-sectional survey of adult allo-BMT survivors transplanted between 2000 and 2012 in Sydney, Australia. Participants completed six validated instruments and one purposed designed for the study, the Sydney Post BMT Study (SPBS), answering questions relating to medication use, medical treatments, referrals, assessments and frequency of hospital/clinic attendance. RESULTS: Of the 441 allo-BMT survivors, over a quarter who were more than 2 years post BMT attended the hospital clinic at least monthly, and 26.7% required a number of regular medical procedures (e.g. venesection, extracorpororeal photopheresis). Specialist medical and allied health referral was very common, and compliance with internationally recommended long-term follow-up (LTFU) care was suboptimal and decreased as time from BMT increased. CONCLUSION: Respondents reported a large medication (conventional and complementary), screening, assessment and health care burden. IMPLICATIONS FOR CANCER SURVIVORS: Treatment burden contributes significantly to the 'workload' of survivorship and can have a severe and negative impact on BMT survivors, carers and the healthcare system-making it difficult to comply with optimal care. Clinicians must be primed with skills to identify survivors who are overburdened by the health care required for survival and develop strategies to help ease the burden.
BACKGROUND: Allogenic blood and marrow transplant (allo-BMT) is an arduous treatment used increasingly for many life-threatening conditions. Recognition of the profound impacts of the long term and late effects is ever-growing, as is the healthcare workload (treatment burden) of survivorship. PURPOSE: To quantify the treatment burden of long-term survival following allo-BMT, regarding the range of health services, therapies and investigations accessed by survivors. METHODS: A large, multi-centre cross-sectional survey of adult allo-BMT survivors transplanted between 2000 and 2012 in Sydney, Australia. Participants completed six validated instruments and one purposed designed for the study, the Sydney Post BMT Study (SPBS), answering questions relating to medication use, medical treatments, referrals, assessments and frequency of hospital/clinic attendance. RESULTS: Of the 441 allo-BMT survivors, over a quarter who were more than 2 years post BMT attended the hospital clinic at least monthly, and 26.7% required a number of regular medical procedures (e.g. venesection, extracorpororeal photopheresis). Specialist medical and allied health referral was very common, and compliance with internationally recommended long-term follow-up (LTFU) care was suboptimal and decreased as time from BMT increased. CONCLUSION: Respondents reported a large medication (conventional and complementary), screening, assessment and health care burden. IMPLICATIONS FOR CANCER SURVIVORS: Treatment burden contributes significantly to the 'workload' of survivorship and can have a severe and negative impact on BMT survivors, carers and the healthcare system-making it difficult to comply with optimal care. Clinicians must be primed with skills to identify survivors who are overburdened by the health care required for survival and develop strategies to help ease the burden.
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