(HealthDay News) — Patients with glomerular disease and their caregivers give highest priority to outcomes of kidney function, mortality, and need for dialysis or transplant, but they also prioritize life participation and fatigue, according to a study published online in the Clinical Journal of the American Society of Nephrology.
Simon A. Carter, MBBS, from the University of Sydney in Australia, and colleagues sampled adult patients with glomerular disease and their caregivers to identify and prioritize outcomes. A total of 134 participants were sampled across 16 focus groups, including 101 patients and 33 caregivers.
The researchers identified 58 outcomes. Of these, the 10 outcomes that were ranked highest were kidney function (importance score, 0.42), mortality (0.29), dialysis or transplant requirement (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 blood pressure (0.11). The reasons underlying these rankings were constraint of day-to-day experience, such as restrictions of daily activities and loss of social and work opportunities; impaired agency and control over health, which included loss of freedom and fear of unexpected bodily harms; and threats to future health and family, such as endangering life goals and irreversible consequences.
“Involving patients and caregivers in establishing outcomes to be reported in research can strengthen a patient-centered evidence base that supports shared decision-making and better outcomes for patients with glomerular disease,” the authors write.