Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

Abstract

Background and objectivesShared 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, & measurementsWe 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.ResultsAcross 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.ConclusionsPatients with glomerular disease and their caregivers highly prioritize kidney health and survival, but they also prioritize life participation, fatigue, anxiety, and family impact.

Living well with kidney disease by patient and care‐partner empowerment: Kidney health for everyone everywhere

“…Several regional and global kidney health projects have addressed these important questions, including the Standardised Outcomes in Nephrology (SONG) with more than 9000 patients, family members and health professionals from over 70 countries (Carter et al, 2020; Hanson et al, 2020). Across all treatment stages, including CKD, dialysis and transplantation, SONG participating children and adults with CKD consistently gave higher priority to symptoms and life impacts than health professionals (Carter et al, 2020; Hanson et al, 2020). In comparison, health professionals gave higher priority to mortality and hospitalisation than patients and family members.…”

“…Life participation , defined as the ability to do meaningful activities of life including, but not limited to, work, study, family responsibilities, travel, sport, social and recreational activities, was established as a critically important outcome across all treatment stages of CKD (Carter et al, 2020; Tong et al, 2018). The quotations from patients with kidney disease provided in Box 1 demonstrates how life participation reflects the ability to live well with CKD (Gonzalez et al, 2020).…”

Living well with kidney disease by patient and care‐partner empowerment: kidney health for everyone everywhere

“…Several regional and global kidney health projects have addressed these important questions including the Standardised Outcomes in Nephrology (SONG) with more than 9000 patients, family members and health professionals from over 70 countries 2,3 . Across all treatment stages, including CKD, dialysis and transplantation, SONG participating children and adults with CKD consistently gave higher priority to symptoms and life impacts than health professionals 2,3 . In comparison, health professionals gave higher priority to mortality and hospitalisation than patients and family members.…”

“…Life participation , defined as the ability to do meaningful activities of life including, but not limited to, work, study, family responsibilities, travel, sport, social, and recreational activities, was established as a critically important outcome across all treatment stages of CKD 1,2 . The quotations from patients with kidney disease provided in Box 1 (personal communication; quotations are identified by name with permission) demonstrate how life participation reflects the ability to live well with CKD 4 .…”

Living well with kidney disease by patient and care‐partner empowerment: Kidney health for everyone everywhere

“…Several regional and global kidney health projects have addressed these important questions, including the Standardised outcomes in nephrology (SONG) with more than 9000 patients, family members and health professionals from over 70 countries 2,3 . Across all treatment stages, including CKD, dialysis and transplantation, children and adults with CKD who were participating in SONG consistently gave higher priority to symptoms and life impacts than health professionals 2,3 . In comparison, health professionals gave higher priority to mortality and hospitalization than patients and family members.…”