Insights on how physicians can evaluate patient-reported outcomes and health-related quality of life efficiently and effectively in individuals with chronic kidney disease (CKD) were reported in two new studies that appear in the Journal of the American Society of Nephrology(JASN). In addition to monitoring patient's health through specific clinical tests, physicians should also consider what patients say about how they feel and what they can do.
To gain these perspectives from patients with CKD, physicians often use the Kidney Disease Quality of Life (KDQOL)-36, a survey that asks patients for their views about their health. Despite its widespread use, the KDQOL-36 was developed more than a decade ago and is reported to have some disadvantages.
In a JASN study that included 485 patients with CKD, John Ware, Jr., PhD (John Ware Research Group) and his colleagues developed and evaluated an improved and briefer approach to measuring quality of life across the spectrum from early CKD to kidney failure, or end-stage kidney disease (ESKD). The team found that both 6-item and adaptive forms of this Chronic Kidney Disease Quality of Life (CKD-QOL) instrument performed better across multiple tests of validity in head-to-head comparisons with a generic assessment of health-related quality of life called SF-12v2 and with CKD-specific KDQOL-36 measures.
In another JASN study, a team led by John Peipert, PhD (Northwestern University Feinberg School of Medicine) and Ron Hays PhD (UCLA David Geffen School of Medicine) aimed to increase the KDQOL-36's usefulness for patients with ESKD by providing reference values for the US dialysis population. "These reference values will help give context to individual patients' and groups of patients' KDQOL-36 scores by providing a national norm to compare to," said Dr. Peipert. "In addition, for circumstances where a single, composite KDQOL-36 score is useful, we have provided evidence of the reliability and validity for a summary score derived by combining the 3 KDQOL-36 kidney-targeted scales to create the KDQOL-36 Summary Score."
In an accompanying perspective, Dr. Peipert and Dr. Hays noted that ESKD patients stand to benefit from a variety of new clinical and evaluation opportunities with patient-reported outcomes that will help align care with patients' priorities and open new channels for communication between patients and their doctors. "The burden of disease for ESKD patients is formidable and impacts many aspects of patients' lives," they wrote. "Adopting patient-reported outcome-based approaches to manage ESKD patients' health is a very promising way toward easing this burden."