Karine E Manera1,2, David W Johnson3,4,5, Jonathan C Craig6,2, Jenny I Shen7, Lorena Ruiz7, Angela Yee-Moon Wang8, Terence Yip9, Samuel K S Fung10, Matthew Tong11, Achilles Lee12, Yeoungjee Cho3,4, Andrea K Viecelli3,4, Benedicte Sautenet6,2,13,14,15, Armando Teixeira-Pinto6,2, Edwina Anne Brown16, Gillian Brunier17, Jie Dong18, Tony Dunning19, Rajnish Mehrotra20, Saraladevi Naicker21, Roberto Pecoits-Filho22, Jeffrey Perl23, Martin Wilkie24, Allison Tong6,2. 1. Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia; karine.manera@sydney.edu.au. 2. Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia. 3. Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia. 4. Australian Kidney Trials Network, School of Medicine, University of Queensland, Brisbane, Australia. 5. Centre for Kidney Disease Research, University of Queensland at Princess Alexandra Hospital, Brisbane, Australia. 6. Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia. 7. Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor, University of California, Los Angeles Medical Center, Torrance, California. 8. Department of Medicine, Queen Mary Hospital, University of Hong Kong, Hong Kong, China. 9. Department of Medicine, Tung Wah Hospital, Hong Kong, China. 10. Division of Nephrology, Department of Medicine and Geriatrics, Jockey Club Nephrology and Urology Centre, Princess Margaret Hospital, Kowloon, Hong Kong, China. 11. Department of Medicine and Geriatrics, Pok Oi Hospital, Yuen Long, Hong Kong, China. 12. Department of Medicine and Geriatrics, Tuen Mun Hospital, Hong Kong, China. 13. Department of Medicine, University François Rabelais, Tours, France. 14. Department of Nephrology and Clinical Immunology, Tours Hospital, Tours, France. 15. U1246, Institut National de la Santé et de la Recherche Médicale, University François Rabelais, Tours, France. 16. Imperial College Renal and Transplant Centre, Hammersmith Hospital, London, UK. 17. Division of Nephrology, Sunnybrook Health Sciences Centre (retired), Toronto, Ontario, Canada. 18. Renal Division, Department of Medicine, Peking University First Hospital, Beijing, China. 19. South Bank Technical and Further Education, Brisbane, Australia. 20. Division of Nephrology, Department of Medicine, Kidney Research Institute and Harborview Medical Center, University of Washington, Seattle, Washington. 21. Department of Internal Medicine, School of Clinical Medicine, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa. 22. School of Medicine, Pontifícia Universidade Católica do Paraná, Curitiba, Paraná, Brazil. 23. Division of Nephrology, Department of Medicine, St. Michael's Hospital, University of Toronto, Toronto, Ontario, Canada; and. 24. Department of Nephrology, Sheffield Teaching Hospitals National Health Service Foundation Trust, Sheffield, UK.
Abstract
BACKGROUND AND OBJECTIVES: The absence of accepted patient-centered outcomes in research can limit shared decision-making in peritoneal dialysis (PD), particularly because PD-related treatments can be associated with mortality, technique failure, and complications that can impair quality of life. We aimed to identify patient and caregiver priorities for outcomes in PD, and to describe the reasons for their choices. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Patients on PD and their caregivers were purposively sampled from nine dialysis units across Australia, the United States, and Hong Kong. Using nominal group technique, participants identified and ranked outcomes, and discussed the reasons for their choices. An importance score (scale 0-1) was calculated for each outcome. Qualitative data were analyzed thematically. RESULTS: Across 14 groups, 126 participants (81 patients, 45 caregivers), aged 18-84 (mean 54, SD 15) years, identified 56 outcomes. The ten highest ranked outcomes were PD infection (importance score, 0.27), mortality (0.25), fatigue (0.25), flexibility with time (0.18), BP (0.17), PD failure (0.16), ability to travel (0.15), sleep (0.14), ability to work (0.14), and effect on family (0.12). Mortality was ranked first in Australia, second in Hong Kong, and 15th in the United States. The five themes were serious and cascading consequences on health, current and impending relevance, maintaining role and social functioning, requiring constant vigilance, and beyond control and responsibility. CONCLUSIONS: For patients on PD and their caregivers, PD-related infection, mortality, and fatigue were of highest priority, and were focused on health, maintaining lifestyle, and self-management. Reporting these patient-centered outcomes may enhance the relevance of research to inform shared decision-making.
BACKGROUND AND OBJECTIVES: The absence of accepted patient-centered outcomes in research can limit shared decision-making in peritoneal dialysis (PD), particularly because PD-related treatments can be associated with mortality, technique failure, and complications that can impair quality of life. We aimed to identify patient and caregiver priorities for outcomes in PD, and to describe the reasons for their choices. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Patients on PD and their caregivers were purposively sampled from nine dialysis units across Australia, the United States, and Hong Kong. Using nominal group technique, participants identified and ranked outcomes, and discussed the reasons for their choices. An importance score (scale 0-1) was calculated for each outcome. Qualitative data were analyzed thematically. RESULTS: Across 14 groups, 126 participants (81 patients, 45 caregivers), aged 18-84 (mean 54, SD 15) years, identified 56 outcomes. The ten highest ranked outcomes were PD infection (importance score, 0.27), mortality (0.25), fatigue (0.25), flexibility with time (0.18), BP (0.17), PD failure (0.16), ability to travel (0.15), sleep (0.14), ability to work (0.14), and effect on family (0.12). Mortality was ranked first in Australia, second in Hong Kong, and 15th in the United States. The five themes were serious and cascading consequences on health, current and impending relevance, maintaining role and social functioning, requiring constant vigilance, and beyond control and responsibility. CONCLUSIONS: For patients on PD and their caregivers, PD-related infection, mortality, and fatigue were of highest priority, and were focused on health, maintaining lifestyle, and self-management. Reporting these patient-centered outcomes may enhance the relevance of research to inform shared decision-making.
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Authors: Amanda Baumgart; Karine E Manera; David W Johnson; Jonathan C Craig; Jenny I Shen; Lorena Ruiz; Angela Yee-Moon Wang; Terence Yip; Samuel K S Fung; Matthew Tong; Achilles Lee; Yeoungjee Cho; Andrea K Viecelli; Benedicte Sautenet; Armando Teixeira-Pinto; Edwina A Brown; Gillian Brunier; Jie Dong; Nicole Scholes-Robertson; Tony Dunning; Rajnish Mehrotra; Saraladevi Naicker; Roberto Pecoits-Filho; Jeffrey Perl; Martin Wilkie; Allison Tong Journal: Nephrol Dial Transplant Date: 2020-11-01 Impact factor: 5.992
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