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Young people with kidney disease prioritize different outcomes than their caregivers
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Young people with kidney disease prioritized outcomes that were most relevant to their daily life and that had immediate impact, whereas their caregivers gave greater importance to long-term health outcomes, according to published findings.
“Chronic kidney disease has devastating, long-term and wide-ranging consequences for young people and their families,” Camilla S. Hanson, PhD, of the Sydney School of Public Health at the University of Sydney and the Centre for Kidney Research, Children’s Hospital at Westmead, in Australia, and colleagues wrote. “Interventions in CKD can have profound consequences on patients and their families, yet we do not know the impact of interventions on outcomes of importance to patients and families because these outcomes are often omitted from studies. Prior studies have systematically identified outcomes that are important to adults with CKD, but the outcomes that are highly prioritized by children with CKD and caregivers are unknown.”
Researchers conducted 16 focus groups with 34 patients aged 8 to 21 years with kidney disease (encompassing those who had non-dialysis dependent CKD stages 1 to 5, those who were on dialysis or who had a transplant) and 62 caregivers (76% were mothers of the patients). Patients and caregivers participated in separate sessions.
Participants were asked to collectively develop a list of important outcomes and to prioritize the items on the list individually. Patients ranked 34 outcomes and caregivers ranked 33 for a total of 48 unique outcomes.
Researchers found that, for patients, the five highest-ranked outcomes were survival, physical activity, fatigue, lifestyle restrictions and growth. For caregivers, the highest ranked outcomes were kidney function, survival, infection, anemia and growth.
To help explain how outcomes were prioritized, researchers identified 12 related themes which were then classified into current/immediate impacts and future/long-term outcomes.
Overall, patients gave the highest priority to the outcomes that had most immediate consequences or affected their ability to function and interact with others on-a-daily basis. While caregivers did appreciate these everyday burdens, researchers found caregivers were more concerned with long-term health, graft survival and life expectancy. The current outcomes they most highly prioritized focused on family and financial burdens and complications, such as infection.
Researchers also noted that although some adolescents were concerned about prognostic uncertainty and limited future opportunities, most seemed optimistic about these outcomes and ranked these lower than their caregivers.
Finally, the researchers emphasized there was variability in the prioritization of outcomes by patient-age and, therefore, these priority outcomes should not be considered “fixed and homogeneous.”
“Patient- and family-centered care necessitates the recognition and evaluation of outcomes that are important to patients and caregivers and their values and goals attached to these outcomes,” the researchers wrote. “There is still a need to address the mismatch between the outcomes reported in trials and those that are most important to patients with CKD and their caregivers to inform clinical decision-making. Research that reports outcomes that are important to young people with CKD and their caregivers can better inform shared decision-making.” – by Melissa J. Webb
Disclosures: Hanson reports support from the National Health and Medical Research Council Program Grant. Please see the study for all other authors’ relevant financial disclosures.
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