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Abstract: TH-PO1050

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers: A Multinational Nominal Group Technique Study

Session Information

Category: Glomerular Diseases

  • 1203 Glomerular Diseases: Clinical, Outcomes, and Trials

Authors

  • Carter, Simon A., Centre for Kidney Research, Sydney, New South Wales, Australia
  • Gutman, Talia M., Centre for Kidney Research, Sydney, New South Wales, Australia
  • Logeman, Charlotte, Centre for Kidney Research, Sydney, New South Wales, Australia
  • Cho, Yeoung Jee, Princess Alexandra Hospital, Brisbane, Queensland, Australia
  • Ryan, Jessica, Monash Health, Clayton, Victoria, Australia
  • Shen, Jenny I., LaBiomed at Harbor-UCLA, Torrance, California, United States
  • Viecelli, Andrea K., Princess Alexandra Hospital, Brisbane, Queensland, Australia
  • Wang, Angela Yee Moon, University of Hong Kong, Queen Mary Hospital, Hong Kong, HONG KONG, China
  • Wilkie, Martin E., Sheffield Teaching Hospitals, Sheffield, United Kingdom
  • Craig, Jonathan C., Flinders University, Adelaide, South Australia, Australia
  • Tong, Allison, The University of Sydney, Seven Hills, New South Wales, Australia

Group or Team Name

  • SONG-GD Investigators
Background

Outcomes that are important to patients with glomerular disease remain uncertain and therefore shared-decision making can be challenging. We aimed to identify and prioritize outcomes important to patients and their caregivers, and the reasons for their choices.

Methods

We purposively sampled patients aged ≥18 years with glomerular disease and their caregivers from Australia, Hong Kong, United Kingdom and United States. Participants identified, ranked and discussed outcomes. Each outcome was ranked using a relative importance score between 0 and 1. Qualitative data were analyzed thematically.

Results

Across 16 focus groups, 132 participants (100 patients, 32 caregivers) identified 58 outcomes. Patients were aged 19 to 85 years (mean 51 years), 47 (47%) were female and 29 (29%) were on dialysis or had received a kidney transplant. Thirty eight (38%) had kidney-limited glomerular disease, 31 (31%) had glomerular disease with systemic features, and 31 (31%) had other or unknown subtypes. The ten highest ranked outcomes were: kidney function (importance score 0.42), mortality (0.29), need for dialysis or transplant (0.22), life participation (0.18), fatigue (0.17), anxiety (0.13), impact on family (0.12), infection and immunity (0.12), ability to work (0.11) and blood pressure (0.11; Figure 1). The top five outcomes were identical for patients and caregivers. The top three outcomes were the same across disease subtypes. 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.

Conclusion

Patients with glomerular disease and their caregivers highly prioritize kidney health and survival, as well as life participation, fatigue, anxiety and the impact on family. Consistent reporting of these outcomes in trials may improve shared decision-making.

Figure 1. Relative rankings of outcomes by patients and caregivers

Funding

  • Government Support - Non-U.S.