{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,10]],"date-time":"2026-01-10T07:51:15Z","timestamp":1768031475694,"version":"3.49.0"},"reference-count":51,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"5","funder":[{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["1092957"],"award-info":[{"award-number":["1092957"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["1168994"],"award-info":[{"award-number":["1168994"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["K08DK102542"],"award-info":[{"award-number":["K08DK102542"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["1126256"],"award-info":[{"award-number":["1126256"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["1169149"],"award-info":[{"award-number":["1169149"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["1117534"],"award-info":[{"award-number":["1117534"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["K23DK103972"],"award-info":[{"award-number":["K23DK103972"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["1106716"],"award-info":[{"award-number":["1106716"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["1114539"],"award-info":[{"award-number":["1114539"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["CJASN"],"published-print":{"date-parts":[[2020,5]]},"abstract":"<jats:sec>\n            <jats:title>Background and objectives<\/jats:title>\n            <jats:p>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.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Design, setting, participants, &amp; measurements<\/jats:title>\n            <jats:p>We 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.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Results<\/jats:title>\n            <jats:p>Across 16 focus groups, 134 participants (range, 19\u201385 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.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Conclusions<\/jats:title>\n            <jats:p>Patients with glomerular disease and their caregivers highly prioritize kidney health and survival, but they also prioritize life participation, fatigue, anxiety, and family impact.<\/jats:p>\n          <\/jats:sec>","DOI":"10.2215\/cjn.13101019","type":"journal-article","created":{"date-parts":[[2020,4,30]],"date-time":"2020-04-30T19:55:13Z","timestamp":1588276513000},"page":"673-684","source":"Crossref","is-referenced-by-count":81,"title":["Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers"],"prefix":"10.2215","volume":"15","author":[{"given":"Simon A.","family":"Carter","sequence":"first","affiliation":[{"name":"Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia"},{"name":"Centre for Kidney Research, The Children\u2019s Hospital at Westmead, Sydney, New South Wales, Australia"}]},{"given":"Talia","family":"Gutman","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia"},{"name":"Centre for Kidney Research, The Children\u2019s Hospital at Westmead, Sydney, New South Wales, Australia"}]},{"given":"Charlotte","family":"Logeman","sequence":"additional","affiliation":[{"name":"Centre for Kidney Research, The Children\u2019s Hospital at Westmead, Sydney, New South Wales, Australia"}]},{"given":"Dan","family":"Cattran","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada"},{"name":"Toronto General Research Institute, Toronto, Ontario, Canada"}]},{"given":"Liz","family":"Lightstone","sequence":"additional","affiliation":[{"name":"Centre for Inflammatory Disease, Faculty of Medicine, Imperial College London, London, United Kingdom"}]},{"given":"Arvind","family":"Bagga","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India"}]},{"given":"Sean J.","family":"Barbour","sequence":"additional","affiliation":[{"name":"Division of Nephrology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9063-7229","authenticated-orcid":false,"given":"Jonathan","family":"Barratt","sequence":"additional","affiliation":[{"name":"Department of Infection, Immunity and Inflammation, University of Leicester, Leicester, United Kingdom"},{"name":"John Walls Renal Unit, Leicester General Hospital, Leicester, United Kingdom"}]},{"given":"John","family":"Boletis","sequence":"additional","affiliation":[{"name":"Nephrology Department and Renal Transplantation Unit, Medical School, University of Athens, Laiko Hospital, Athens, Greece"}]},{"given":"Dawn","family":"Caster","sequence":"additional","affiliation":[{"name":"Division of Nephrology, University of Louisville, Kentucky, Louisville"}]},{"given":"Rosanna","family":"Coppo","sequence":"additional","affiliation":[{"name":"Fondazione Ricerca Molinette, Regina Margherita Hospital, Turin, Italy"}]},{"given":"Fernando C.","family":"Fervenza","sequence":"additional","affiliation":[{"name":"Division of Nephrology and Hypertension, Department of Internal Medicine, Mayo Clinic, Rochester, Minnesota"}]},{"given":"J\u00fcrgen","family":"Floege","sequence":"additional","affiliation":[{"name":"Department of Nephrology and Clinical Immunology, Rheinisch-Westf\u00e4lische Technische Hochschule University Hospital, Aachen, Germany"}]},{"given":"Michelle","family":"Hladunewich","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada"},{"name":"Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada"}]},{"given":"Jonathan J.","family":"Hogan","sequence":"additional","affiliation":[{"name":"Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2713-2391","authenticated-orcid":false,"given":"A. Richard","family":"Kitching","sequence":"additional","affiliation":[{"name":"Department of Nephrology, Monash Health, Clayton, Victoria, Australia"},{"name":"Centre for Inflammatory Diseases, Department of Medicine, Monash University, Clayton, Victoria, Australia"}]},{"given":"Richard A.","family":"Lafayette","sequence":"additional","affiliation":[{"name":"Stanford University Medical Center, Stanford, California"},{"name":"Division of Nephrology, Department of Medicine, Stanford University, Stanford, California"}]},{"given":"Ana","family":"Malvar","sequence":"additional","affiliation":[{"name":"Nephrology, Hospital Fern\u00e1ndez, Buenos Aires, Argentina"}]},{"given":"Jai","family":"Radhakrishnan","sequence":"additional","affiliation":[{"name":"Colombia University Medical Center, New York, New York"}]},{"given":"Brad H.","family":"Rovin","sequence":"additional","affiliation":[{"name":"Division of Nephrology, Department of Internal Medicine, Ohio State University Wexner Medical Center, Columbus, Ohio"}]},{"given":"Nicole","family":"Scholes-Robertson","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia"},{"name":"Centre for Kidney Research, The Children\u2019s Hospital at Westmead, Sydney, New South Wales, Australia"}]},{"given":"H\u00e9rnan","family":"Trimarchi","sequence":"additional","affiliation":[{"name":"Nephrology Service and Kidney Transplantation Unit, Hospital Britanico de Buenos Aires, Buenos Aires, Argentina"}]},{"given":"Hong","family":"Zhang","sequence":"additional","affiliation":[{"name":"Renal Division, Peking University First Hospital, Beijing, China"}]},{"given":"Karolis","family":"Azukaitis","sequence":"additional","affiliation":[{"name":"Clinic of Pediatrics, Institute of Clinical Medicine, Faculty of Medicine, Vilnius University, Vilnius, Lithuania"}]},{"given":"Yeoungjee","family":"Cho","sequence":"additional","affiliation":[{"name":"Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia"},{"name":"Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia"},{"name":"Translational Research Institute, Brisbane, Queensland, Australia"}]},{"given":"Andrea K.","family":"Viecelli","sequence":"additional","affiliation":[{"name":"Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia"},{"name":"Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia"}]},{"given":"Louese","family":"Dunn","sequence":"additional","affiliation":[{"name":"Sheffield Kidney Institute, Sheffield Teaching Hospitals National Health Service Foundation Trust, Sheffield, United Kingdom"}]},{"given":"David","family":"Harris","sequence":"additional","affiliation":[{"name":"Westmead Institute for Medical Research, The University of Sydney, Sydney, New South Wales, Australia"},{"name":"Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5491-3460","authenticated-orcid":false,"given":"David W.","family":"Johnson","sequence":"additional","affiliation":[{"name":"Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia"},{"name":"Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia"},{"name":"Translational Research Institute, Brisbane, Queensland, Australia"}]},{"given":"Peter G.","family":"Kerr","sequence":"additional","affiliation":[{"name":"Centre for Inflammatory Diseases, Department of Medicine, Monash University, Clayton, Victoria, Australia"}]},{"given":"Paul","family":"Laboi","sequence":"additional","affiliation":[{"name":"Department of Nephrology, York Hospital, York, United Kingdom"}]},{"given":"Jessica","family":"Ryan","sequence":"additional","affiliation":[{"name":"Department of Nephrology, Monash Health, Clayton, Victoria, Australia"},{"name":"Centre for Inflammatory Diseases, Department of Medicine, Monash University, Clayton, Victoria, Australia"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2993-403X","authenticated-orcid":false,"given":"Jenny I.","family":"Shen","sequence":"additional","affiliation":[{"name":"Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor\u2013University of California, Los Angeles Medical Center, Torrance, California"}]},{"given":"Lorena","family":"Ruiz","sequence":"additional","affiliation":[{"name":"Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor\u2013University of California, Los Angeles Medical Center, Torrance, California"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2508-7117","authenticated-orcid":false,"given":"Angela Yee-Moon","family":"Wang","sequence":"additional","affiliation":[{"name":"Department of Medicine, Queen Mary Hospital, University of Hong Kong, Hong Kong, China"}]},{"given":"Achilles Hoi Kan","family":"Lee","sequence":"additional","affiliation":[{"name":"Department of Medicine, Tuen Mun Hospital, Hong Kong, China"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2955-638X","authenticated-orcid":false,"given":"Samuel","family":"Fung","sequence":"additional","affiliation":[{"name":"Department of Medicine and Geriatrics, Princess Margaret Hospital, Hong Kong, China"}]},{"given":"Matthew Ka-Hang","family":"Tong","sequence":"additional","affiliation":[{"name":"Department of Medicine and Geriatrics, Pok Oi Hospital, Hong Kong, China"}]},{"given":"Armando","family":"Teixeira-Pinto","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia"},{"name":"Centre for Kidney Research, The Children\u2019s Hospital at Westmead, Sydney, New South Wales, Australia"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1059-6453","authenticated-orcid":false,"given":"Martin","family":"Wilkie","sequence":"additional","affiliation":[{"name":"Department of Nephrology, Sheffield Teaching Hospitals National Health Service Foundation Trust, Sheffield, United Kingdom"}]},{"given":"Stephen I.","family":"Alexander","sequence":"additional","affiliation":[{"name":"Centre for Kidney Research, The Children\u2019s Hospital at Westmead, Sydney, New South Wales, Australia"}]},{"given":"Jonathan C.","family":"Craig","sequence":"additional","affiliation":[{"name":"College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia"}]},{"given":"Allison","family":"Tong","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia"},{"name":"Centre for Kidney Research, The Children\u2019s Hospital at Westmead, Sydney, New South Wales, Australia"}]},{"name":"on 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