Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

Simon Carter(The University of Sydney), Talia Gutman(The University of Sydney), Charlotte Logeman(Children's Hospital at Westmead), D C Cattran(University of Toronto), Liz Lightstone(Imperial College London), Arvind Bagga(All India Institute of Medical Sciences), Sean J. Barbour(University of British Columbia), Jonathan Barratt(University of Leicester), John Boletis(National and Kapodistrian University of Athens), Dawn J. Caster(University of Louisville), Rosanna Coppo(Fondazione Ricerca Molinette), Fernando C. Fervenza(Mayo Clinic), Jürgen Floege(Universitätsklinikum Aachen), Michelle Hladunewich(Sunnybrook Health Science Centre), Jonathan J. Hogan(University of Pennsylvania), A. Richard Kitching(Monash Health), Richard Lafayette(Stanford Medicine), Ana Malvar(Hospital Fernández), Jai Radhakrishnan(Columbia University Irving Medical Center), Brad H. Rovin(The Ohio State University Wexner Medical Center), Nicole Scholes‐Robertson(The University of Sydney), Hernán Trimarchi(Hospital Británico de Buenos Aires), Hong Zhang(Peking University), Karolis Ažukaitis(Vilnius University), Yeoungjee Cho(Translational Research Institute), Andrea K. Viecelli(The University of Queensland), Louese Dunn(National Health Service), David C.H. Harris(The University of Sydney), David W. Johnson(Translational Research Institute), Peter G. Kerr(Monash University), Paul Laboi(York Hospital), Jessica Ryan(Monash Health), Jenny I. Shen(University of California, Los Angeles), Lorena Ruiz(University of California, Los Angeles), Angela Yee‐Moon Wang(Queen Mary Hospital), Achilles Hoi Kan Lee(Tuen Mun Hospital), Samuel Fung, M.K.H. Tong, Armando Teixeira‐Pinto(The University of Sydney), Martin Wilkie(National Health Service), Stephen I. Alexander(Children's Hospital at Westmead), Jonathan C. Craig(Flinders University), Allison Tong(The University of Sydney), on behalf of the SONG-GD Investigators
Clinical Journal of the American Society of Nephrology
April 30, 2020
10.2215/cjn.13101019
Cited by 97Open Access
Full Text

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: 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. 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.

Related Papers

Patient-Reported Outcomes to Support Medical Product Labeling Claims: FDA Perspective
Donald L. Patrick, Laurie B. Burke, John H. Powers et al.|Value in Health|2007|715
The nominal group as a research instrument for exploratory health studies.
Andrew H. Van de Ven, André L. Delbecq|American Journal of Public Health|1972|625
Gefitinib for oesophageal cancer progressing after chemotherapy (COG): a phase 3, multicentre, double-blind, placebo-controlled randomised trial
Susan Dutton, David Ferry, Jane Blazeby et al.|The Lancet Oncology|2014|330
Survival analysis and causes of mortality in patients with lupus nephritis
Desmond Y. H. Yap, C. S. O. Tang, M. K. M. et al.|Nephrology Dialysis Transplantation|2012|322
Prognosis in IgA Nephropathy: 30-Year Analysis of 1,012 Patients at a Single Center in Japan
Takahito Moriyama, Kayu Tanaka, Chihiro Iwasaki et al.|PLoS ONE|2014|252