Fiona Crawford-Williams1,2, Bogda Koczwara3,4, Raymond J Chan5,6,7, Janette Vardy8,9, Karolina Lisy10,11,12, Julia Morris13,14, Mahesh Iddawela15,16, Gillian Mackay17, Michael Jefford10,11,12. 1. Cancer and Palliative Care Outcomes Centre and School of Nursing, Queensland University of Technology, Brisbane, QLD, Australia. Fiona.CrawfordWilliams@qut.edu.au. 2. Caring Futures Institute, College of Nursing and Health Sciences, Flinders University, Bedford Park, SA, Australia. Fiona.CrawfordWilliams@qut.edu.au. 3. Flinders Centre for Innovation in Cancer, Flinders University, Bedford Park, SA, Australia. 4. Department of Medical Oncology, Flinders Medical Centre, Bedford Park, SA, Australia. 5. Cancer and Palliative Care Outcomes Centre and School of Nursing, Queensland University of Technology, Brisbane, QLD, Australia. 6. Caring Futures Institute, College of Nursing and Health Sciences, Flinders University, Bedford Park, SA, Australia. 7. Department of Cancer Services, Princess Alexandra Hospital, Woolloongabba, QLD, Australia. 8. Concord Cancer Centre, Concord Repatriation General Hospital, Sydney, NSW, Australia. 9. Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia. 10. Department of Health Services Research, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia. 11. Australian Cancer Survivorship Centre, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia. 12. Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne, VIC, Australia. 13. Cancer Council SA, Adelaide, SA, Australia. 14. School of Psychology Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, SA, Australia. 15. Latrobe Regional Hospital, Traralgon, VIC, Australia. 16. Alfred Health, Melbourne, VIC, Australia. 17. Clinical Oncology Society of Australia (COSA), Sydney, NSW, Australia.
Abstract
PURPOSE: The aim of this study was to establish research and infrastructure priorities for cancer survivorship. METHODS: A two-round modified online Delphi study was completed by Australian experts in cancer survivorship. Initial priorities were generated from the literature and organized into four research categories: physiological outcomes, psychosocial outcomes, population groups, and health services; and one research infrastructure category. In round 1 (R1), panelists ranked the importance of 77 items on a five-point scale (not at all important to very important). In round 2 (R2), panelists ranked their top 5 priorities within each category. Panelists also specified the type of research needed, such as biological, exploratory, intervention development, or implementation, for the items within each research category. RESULTS: Response rates were 76% (63/82) and 82% (68/82) respectively. After R1, 12 items were added, and 16 items combined or reworded. In R2, the highest prioritized research topics and the preferred type of research in each category were: biological research in cancer progression and recurrence; implementation and dissemination research for fear of recurrence; exploratory research for rare cancer types; and implementation research for quality of care topics. Data availability was listed as the most important priority for research infrastructure. CONCLUSIONS: This study has defined priorities that can be used to support coordinated action between researchers, funding bodies, and other key stakeholders. Designing future research which addresses these priorities will expand our ability to meet survivors' diverse needs and lead to improved outcomes.
PURPOSE: The aim of this study was to establish research and infrastructure priorities for cancer survivorship. METHODS: A two-round modified online Delphi study was completed by Australian experts in cancer survivorship. Initial priorities were generated from the literature and organized into four research categories: physiological outcomes, psychosocial outcomes, population groups, and health services; and one research infrastructure category. In round 1 (R1), panelists ranked the importance of 77 items on a five-point scale (not at all important to very important). In round 2 (R2), panelists ranked their top 5 priorities within each category. Panelists also specified the type of research needed, such as biological, exploratory, intervention development, or implementation, for the items within each research category. RESULTS: Response rates were 76% (63/82) and 82% (68/82) respectively. After R1, 12 items were added, and 16 items combined or reworded. In R2, the highest prioritized research topics and the preferred type of research in each category were: biological research in cancer progression and recurrence; implementation and dissemination research for fear of recurrence; exploratory research for rare cancer types; and implementation research for quality of care topics. Data availability was listed as the most important priority for research infrastructure. CONCLUSIONS: This study has defined priorities that can be used to support coordinated action between researchers, funding bodies, and other key stakeholders. Designing future research which addresses these priorities will expand our ability to meet survivors' diverse needs and lead to improved outcomes.
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