Study identifies highest priorities of patients with glomerular disease and their families
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A study involving participants from Australia, Hong Kong, the United Kingdom and the United States, revealed what is most important to patients with glomerular disease and their caregivers. The highest-rated priorities were related to kidney health and survival, as well to the ability to actively participate in their lives and the impact on family members.
“The management of glomerular disease can be challenging because of the heterogeneity and unpredictability of the disease course,” Simon A. Carter, MBBS, of The University of Sydney, and colleagues wrote. “Moreover, there is uncertainty about what outcomes of the disease and its treatment are most important to patients.”
Kidney failure, bone disease, cancer, infertility, fatigue, swelling, impaired psychosocial well-being and reduced life expectancy can all be experienced by patients with glomerular disease, according to the researchers.
The investigators argued that to evaluate treatment options adequately, “decision-makers require comprehensive information about all relevant harms and benefits.” However, they wrote, many of these outcomes, “particularly patient-reported outcomes,” remain under-studied.
To further explore this area, the researchers held 16 focus groups of 134 participants (participant age ranged from 19 to 85 years; 101 were patients and 33 were caregivers). During the focus groups, participants identified, discussed, and subsequently ranked outcomes. A “relative importance score” was then calculated (between 0 and 1).
In total, participants identified 58 outcomes. Three themes emerged from the most frequently cited outcomes, which researchers categorized as those that:
- constrained day-to-day experience;
- impaired agency and control over health; or
- posed threat to future health and family.
The 10 highest-ranked outcomes 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).
In a related press release, Carter elaborated on the findings suggesting that "[t]he reasons why these outcomes were so highly prioritized were because they restricted and limited people's day-to-day living, reduced their ability to control or influence their own health, and threatened either their own future health or the health of their family.”
“These life- and family-related concerns are poorly studied so far in trials in glomerular disease, but they are more important to patients and caregivers than other commonly reported outcomes such as relapse, remission and proteinuria,” he added. – by Melissa J. Webb
Disclosures: The research was supported by a National Health and Medical Research Council (NHMRC) Program Grant. Carter reports being supported by the NHMRC Post-graduate Scholarship. Please see the study for all other authors’ relevant financial disclosures.
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