Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers
Simon Carter, Talia Gutman, Charlotte Logeman, D C Cattran, Liz Lightstone, Arvind Bagga, Sean J. Barbour, Jonathan Barratt, John Boletis, Dawn J. Caster, Rosanna Coppo, Fernando C. Fervenza, Jürgen Floege, Michelle Hladunewich, Jonathan J. Hogan, A. Richard Kitching, Richard Lafayette, Ana Malvar, Jai Radhakrishnan, Brad H. Rovin, Nicole Scholes‐Robertson, Hernán Trimarchi, Hong Zhang, Karolis Ažukaitis, Yeoungjee Cho, Andrea K. Viecelli, Louese Dunn, David C.H. 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, M.K.H. Tong, Armando Teixeira‐Pinto, Martin Wilkie, Stephen I. Alexander, Jonathan C. Craig, Allison Tong, on behalf of the SONG-GD Investigators
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.