Dr. Allison Tong (AT), from the University of Sydney and The Children’s Hospital at Westmead (Sydney, Australia), discusses her recent AJKD article, “Patient and Caregiver Priorities for Outcomes in Hemodialysis: An International Nominal Group Technique Study,” with Dr. Kenar Jhaveri (AJKDblog), AJKD Blog Editor.

AJKDblog: Can you tell us about your study and why you think this is an important topic?

Fig 2 from Urquhart-Secord et al AJKD, © National Kidney Foundation.

AT: The outcomes reported in trials are usually selected by researchers with little or no involvement from patients or caregivers. Biochemical outcomes, such as serum calcium, phosphate, and para-thyroid hormone, are often selected over outcomes that are valued  not only by patients who want to “live well” on dialysis but also by their caregivers. We sought to identify outcomes that are important to patients and caregivers to help align research with patient priorities and generate patient-relevant evidence that will strengthen capacities for shared-decision making in practice. We conducted focus groups with nominal group technique with 82 patients and caregivers in Australia and Canada. The participants were asked to identify, rank, and discuss outcomes they believed were important to include in research for people on hemodialysis. The top 10 ranked outcomes were fatigue, survival (defined as resilience), ability to travel, dialysis-free time, impact on family, ability to work, sleep, anxiety and stress, blood pressure control, and anorexia. Interestingly, mortality was ranked 14^th, though caregivers ranked this outcome higher than patients. These results highlight a mismatch between patient-prioritized outcomes and those commonly reported in hemodialysis trials.

AJKDblog: How does this affect quality metrics in dialysis for which most nephrologists are responsible?

AT: Several steps are needed to change quality metrics to include outcomes that are important to patients. This study was conducted as part of the broader international Standardised Outcomes in Nephrology (SONG) initiative, which engages patients, caregivers and healthcare providers, and policy makers to establish consensus-based core outcomes in research that could also be considered for quality metrics. The outcomes from this study were included in the SONG-HD Delphi survey that involved all stakeholder groups. Fatigue was ranked in the top three among patients and caregivers. We would suggest that there needs to be a particular focus on fatigue.

AJKDblog: What are your next steps? What questions came out of this study that you want to pursue?

AT: As mentioned, this study is contributing to the SONG Initiative. Since this survey, we have completed an International Delphi Survey to reach consensus on what outcomes should be included in the core outcomes set for research trials in hemodialysis and have convened a consensus workshop. We are in the process of establishing core outcomes, and subsequent work will focus on identifying and developing core outcome measures for each outcome domain—one of which is likely to be fatigue.

To view the article full-text or PDF, please visit AJKD.org.