Simon A Carter1,2, Talia Gutman3,2, Charlotte Logeman2, Dan Cattran4,5, Liz Lightstone6, Arvind Bagga7, Sean J Barbour8, Jonathan Barratt9,10, John Boletis11, Dawn Caster12, Rosanna Coppo13, Fernando C Fervenza14, Jürgen Floege15, Michelle Hladunewich4,16, Jonathan J Hogan17, A Richard Kitching18,19, Richard A Lafayette20,21, Ana Malvar22, Jai Radhakrishnan23, Brad H Rovin24, Nicole Scholes-Robertson3,2, Hérnan Trimarchi25, Hong Zhang26, Karolis Azukaitis27, Yeoungjee Cho28,29,30, Andrea K Viecelli28,29, Louese Dunn31, David Harris32,33, David W Johnson28,29,30, Peter G Kerr19, Paul Laboi34, Jessica Ryan18,19, Jenny I Shen35, Lorena Ruiz35, Angela Yee-Moon Wang36, Achilles Hoi Kan Lee37, Samuel Fung38, Matthew Ka-Hang Tong39, Armando Teixeira-Pinto3,2, Martin Wilkie40, Stephen I Alexander2, Jonathan C Craig41, Allison Tong3,2. 1. Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia simon.carter@health.nsw.gov.au. 2. Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia. 3. Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia. 4. Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada. 5. Toronto General Research Institute, Toronto, Ontario, Canada. 6. Centre for Inflammatory Disease, Faculty of Medicine, Imperial College London, London, United Kingdom. 7. Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India. 8. Division of Nephrology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada. 9. Department of Infection, Immunity and Inflammation, University of Leicester, Leicester, United Kingdom. 10. John Walls Renal Unit, Leicester General Hospital, Leicester, United Kingdom. 11. Nephrology Department and Renal Transplantation Unit, Medical School, University of Athens, Laiko Hospital, Athens, Greece. 12. Division of Nephrology, University of Louisville, Kentucky, Louisville. 13. Fondazione Ricerca Molinette, Regina Margherita Hospital, Turin, Italy. 14. Division of Nephrology and Hypertension, Department of Internal Medicine, Mayo Clinic, Rochester, Minnesota. 15. Department of Nephrology and Clinical Immunology, Rheinisch-Westfälische Technische Hochschule University Hospital, Aachen, Germany. 16. Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada. 17. Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania. 18. Department of Nephrology, Monash Health, Clayton, Victoria, Australia. 19. Centre for Inflammatory Diseases, Department of Medicine, Monash University, Clayton, Victoria, Australia. 20. Stanford University Medical Center, Stanford, California. 21. Division of Nephrology, Department of Medicine, Stanford University, Stanford, California. 22. Nephrology, Hospital Fernández, Buenos Aires, Argentina. 23. Colombia University Medical Center, New York, New York. 24. Division of Nephrology, Department of Internal Medicine, Ohio State University Wexner Medical Center, Columbus, Ohio. 25. Nephrology Service and Kidney Transplantation Unit, Hospital Britanico de Buenos Aires, Buenos Aires, Argentina. 26. Renal Division, Peking University First Hospital, Beijing, China. 27. Clinic of Pediatrics, Institute of Clinical Medicine, Faculty of Medicine, Vilnius University, Vilnius, Lithuania. 28. Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia. 29. Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia. 30. Translational Research Institute, Brisbane, Queensland, Australia. 31. Sheffield Kidney Institute, Sheffield Teaching Hospitals National Health Service Foundation Trust, Sheffield, United Kingdom. 32. Westmead Institute for Medical Research, The University of Sydney, Sydney, New South Wales, Australia. 33. Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia. 34. Department of Nephrology, York Hospital, York, United Kingdom. 35. Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor-University of California, Los Angeles Medical Center, Torrance, California. 36. Department of Medicine, Queen Mary Hospital, University of Hong Kong, Hong Kong, China. 37. Department of Medicine, Tuen Mun Hospital, Hong Kong, China. 38. Department of Medicine and Geriatrics, Princess Margaret Hospital, Hong Kong, China. 39. Department of Medicine and Geriatrics, Pok Oi Hospital, Hong Kong, China. 40. Department of Nephrology, Sheffield Teaching Hospitals National Health Service Foundation Trust, Sheffield, United Kingdom. 41. College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia.
Abstract
BACKGROUND AND OBJECTIVES: Shared decision making in patients with glomerular disease remains challenging because outcomes important to patients remain largely unknown. We aimed to identify and prioritize outcomes important to patients and caregivers and to describe reasons for their choices. DESIGN: , setting, participants, & measurementsWe purposively sampled adult patients with glomerular disease and their caregivers from Australia, Hong Kong, the United Kingdom, and the United States. Participants identified, discussed, and ranked outcomes in focus groups using the nominal group technique; a relative importance score (between zero and one) was calculated. Qualitative data were analyzed thematically. RESULTS: Across 16 focus groups, 134 participants (range, 19-85 years old; 51% women), including 101 patients and 33 caregivers, identified 58 outcomes. The ten highest-ranked outcomes were kidney function (importance score of 0.42), mortality (0.29), need for dialysis or transplant (0.22), life participation (0.18), fatigue (0.17), anxiety (0.13), family impact (0.12), infection and immunity (0.12), ability to work (0.11), and BP (0.11). Three themes explained the reasons for these rankings: constraining day-to-day experience, impaired agency and control over health, and threats to future health and family. CONCLUSIONS: Patients with glomerular disease and their caregivers highly prioritize kidney health and survival, but they also prioritize life participation, fatigue, anxiety, and family impact.
BACKGROUND AND OBJECTIVES: Shared decision making in patients with glomerular disease remains challenging because outcomes important to patients remain largely unknown. We aimed to identify and prioritize outcomes important to patients and caregivers and to describe reasons for their choices. DESIGN: , setting, participants, & measurementsWe purposively sampled adult patients with glomerular disease and their caregivers from Australia, Hong Kong, the United Kingdom, and the United States. Participants identified, discussed, and ranked outcomes in focus groups using the nominal group technique; a relative importance score (between zero and one) was calculated. Qualitative data were analyzed thematically. RESULTS: Across 16 focus groups, 134 participants (range, 19-85 years old; 51% women), including 101 patients and 33 caregivers, identified 58 outcomes. The ten highest-ranked outcomes were kidney function (importance score of 0.42), mortality (0.29), need for dialysis or transplant (0.22), life participation (0.18), fatigue (0.17), anxiety (0.13), family impact (0.12), infection and immunity (0.12), ability to work (0.11), and BP (0.11). Three themes explained the reasons for these rankings: constraining day-to-day experience, impaired agency and control over health, and threats to future health and family. CONCLUSIONS:Patients with glomerular disease and their caregivers highly prioritize kidney health and survival, but they also prioritize life participation, fatigue, anxiety, and family impact.
Authors: Allison Tong; John Gill; Klemens Budde; Lorna Marson; Peter P Reese; David Rosenbloom; Lionel Rostaing; Germaine Wong; Michelle A Josephson; Timothy L Pruett; Anthony N Warrens; Jonathan C Craig; Benedicte Sautenet; Nicole Evangelidis; Angelique F Ralph; Camilla S Hanson; Jenny I Shen; Kirsten Howard; Klemens Meyer; Ronald D Perrone; Daniel E Weiner; Samuel Fung; Maggie K M Ma; Caren Rose; Jessica Ryan; Ling-Xin Chen; Martin Howell; Nicholas Larkins; Siah Kim; Sobhana Thangaraju; Angela Ju; Jeremy R Chapman Journal: Transplantation Date: 2017-08 Impact factor: 4.939
Authors: Martin Howell; Germaine Wong; Robin M Turner; Ho Teck Tan; Allison Tong; Jonathan C Craig; Kirsten Howard Journal: Am J Kidney Dis Date: 2015-12-24 Impact factor: 8.860
Authors: Desmond Y H Yap; Colin S O Tang; Maggie K M Ma; Man Fai Lam; Tak Mao Chan Journal: Nephrol Dial Transplant Date: 2012-04-20 Impact factor: 5.992
Authors: Simon A Carter; Liz Lightstone; Dan Cattran; Allison Tong; Arvind Bagga; Sean J Barbour; Jonathan Barratt; John Boletis; Dawn J Caster; Rosanna Coppo; Fernando C Fervenza; Jürgen Floege; Michelle A Hladunewich; Jonathan J Hogan; A Richard Kitching; Richard A Lafayette; Ana Malvar; Jai Radhakrishnan; Brad H Rovin; Nicole Scholes-Robertson; Hernán Trimarchi; Hong Zhang; Samaya Anumudu; Yeoungjee Cho; Talia Gutman; Emma O'Lone; Andrea K Viecelli; Eric Au; Karolis Azukaitis; Amanda Baumgart; Amelie Bernier-Jean; Louese Dunn; Martin Howell; Angela Ju; Charlotte Logeman; Melissa Nataatmadja; Benedicte Sautenet; Ankit Sharma; Jonathan C Craig Journal: Clin J Am Soc Nephrol Date: 2021-12-30 Impact factor: 8.237
Authors: Andrea L Oliverio; Dorota Marchel; Jonathan P Troost; Isabelle Ayoub; Salem Almaani; Jessica Greco; Cheryl L Tran; Michelle R Denburg; Michael Matheny; Chad Dorn; Susan F Massengill; Hailey Desmond; Debbie S Gipson; Laura H Mariani Journal: Kidney360 Date: 2021-09-27