Identifying outcomes important to patients with glomerular disease and their caregivers

Simon A. Carter, Talia Gutman, Charlotte Logeman, Dan Cattran, Liz Lightstone, Arvind Bagga, Sean J. Barbour, Jonathan Barratt, John Boletis, Dawn Caster, Rosanna Coppo, Fernando C. Fervenza, Ju¨Rgen Floege, Michelle Hladunewich, Jonathan J. Hogan, A. Richard Kitching, Richard A. Lafayette, Ana Malvar, Jai Radhakrishnan, Brad H. RovinNicole Scholes-Robertson, He´Rnan Trimarchi, Hong Zhang, Karolis Azukaitis, Yeoungjee Cho, Andrea K. Viecelli, Louese Dunn, David Harris, David W. Johnson, Peter G. Kerr, Paul Laboi, Jessica Ryan, Jenny I. Shen, Lorena Ruiz, Angela Yee Moon Wang, Achilles Hoi Kan Lee, Samuel Fung, Matthew Ka Hang Tong, Armando Teixeira-Pinto, Martin Wilkie, Stephen I. Alexander, Jonathan C. Craig, Allison Tong

Research output: Contribution to journalArticlepeer-review

28 Scopus citations


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, & measurements 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 out comes 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.

Original languageEnglish (US)
Pages (from-to)673-684
Number of pages12
JournalClinical Journal of the American Society of Nephrology
Issue number5
StatePublished - May 7 2020

ASJC Scopus subject areas

  • Epidemiology
  • Critical Care and Intensive Care Medicine
  • Nephrology
  • Transplantation


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