September 13, 2019
2 min read

Article details tools that measure patient experience in ESKD

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In a published article, researchers suggest nephrologists consider using tools that measure patient experience and perception to develop personalized care plans for those with ESKD.

“Patient advocacy and an increasing appreciation of the central role that symptoms, emotions and goals play in disease perceptions have led to greater emphasis on the use of patient-reported outcome measures [PROMs] in clinical care,” Devika Nair, MD, MSCI, of Vanderbilt University Medical Center, and F. Perry Wilson, MD, MSCE, of Yale University School of Medicine, wrote. “According to the National Quality Forum, a PROM is a measure of a patient’s health conveyed directly by the patients, without interpretation by a clinician. PROMs provide insights into a patient’s well-being that are unable to be captured by laboratory data alone.”

To provide nephrologists with an overview of these tools, researchers conducted an online search of studies related to PROMs that were developed for adults with kidney disease. They found most focused on physical and emotional symptom burden, social relationships and overall health-related quality of life and that, while many were valid and reliable, most focused on experiences of patients receiving in-center hemodialysis. This, they wrote, limits the validity for patients on PD or home dialysis. In addition, measures addressing sexual dysfunction, changes in physical appearance, worries related to travel and finances, spiritual concerns and those that are disease-specific (eg, autosomal dominant polycystic kidney disease) were often underrepresented. Another notable limitation was some requiring patients to recall symptoms during the past month, possibly leading to “recall bias.”

Researchers suggest nephrologists consider using tools that measure patient experience and perception to develop personalized care plans for those with ESKD.
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The researchers also described the potential of including PROMs into randomized controlled trials, which have already been successfully incorporated into RCTs in cardiology and oncology. For trials of kidney disease treatments, they suggest benefits in assessing medication effects, patient symptoms, emotions or pill burden.

Finally, researchers looked at current health care policy, writing that the kidney care community is focusing more on patient-related outcomes, with CMS also creating initiatives for the incorporation of PROMs into dialysis quality metrics. This is fortunate, according to Nair and Wilson, because employing patient reports in clinical care can help with shared decision-making, improve communication between physicians and patients and facilitate patient self-monitoring.

“PROMs are unique in that they allow us to ascertain whether our actions and treatment decisions improve outcomes that matter most to patients,” they wrote. “The thoughtful incorporation of these instruments has the potential to provide deep insights into a patient’s illness experience, advance knowledge gained from clinical trials, transform policy initiatives, and ultimately individualize high-quality care for patients with kidney disease.” – by Melissa J. Webb

Disclosures: The authors report no relevant financial disclosures.