Disclosures: Mucsi reports receiving research funding from and serving as a scientific advisor or member of Paladin Labs Inc. Please see the study for all other authors’ relevant financial disclosures.
August 02, 2021
2 min read

New patient-reported preference measure may support nephrology research, care

Disclosures: Mucsi reports receiving research funding from and serving as a scientific advisor or member of Paladin Labs Inc. Please see the study for all other authors’ relevant financial disclosures.
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A new preference-based measure assessing seven domains of health-related quality of life may offer “significant advantages” for nephrology clinical research and care compared with traditional patient-reported outcome measures.

The study, which included 524 patients with kidney failure, was published in the Clinical Journal of the American Society of Nephrology.

Patient Reported Outcomes Measurement Information System
Infographic content was derived from Zhang J, et al. Clin J Am Soc Nephrol. 2021;doi:10.2215/CJN.01880221.

Preference-based measures

“Patient-reported outcome measures (PROMs) such as the Kidney Disease Quality of Life-36 and the Patient Reported Outcomes Measurement Information System (PROMIS) item banks can evaluate symptoms and [health-related quality of life] HRQOL of patients treated with kidney replacement therapy,” Jing Zhang BSc, MPH, of the University of Toronto, and colleagues wrote. “The PROMIS item banks were developed using item response theory that allows for more reliable and efficient measurement of patient-valued and clinically actionable symptoms and functioning (eg, physical function, fatigue, etc.) over a wide range of severity. They also serve as important outcome measures in trials or cohort studies.

Preference-based health utility measures (such as EQ-5D-5L or SF-6D) are PROMs that yield summary scores that are used to estimate quality-adjusted life years (QALYs). They account for population preference attributed to combinations of various health states, using various methods (eg, time trade off, standard gamble). They range from [less than] 0 (worse than dead) to 1 (full health). Anchoring dead at 0 allows to combine morbidity and mortality to compare the cost-effectiveness of treatment options.”

According to the researchers, the PROMIS-Preference (PROPr) summary score is calculated from the following PROMIS domains: cognitive function abilities, depression, fatigue, pain interference, physical functioning, sleep disturbance and ability to participate in social roles.

The purpose of this study was to assess the validity of utilizing PROPr as a tool to improve care for patients who undergo kidney transplantation or who are treated with hemodialysis.

Participants were recruited from four hospitals in Toronto and completed a variety of questionnaires via iPad, with researchers determining the validity of PROPr by examining correlations between the PROPr and legacy preference-based measures (specifically, the SF-6D and EQ-5D-5L).

Advantages of PROMIS-Preference

Results showed a strong correlation between PROPr and legacy preference-based measures, with researchers also observing PROPr “demonstrated health condition impact in the expected direction” (ie, differences were observed between PROPr estimates for patients on dialysis vs. transplant recipients and according to eGFR measurements).

“Compared to some of the domains of the frequently used EQ-5D-5L (eg, combined anxiety/depression), PROMIS domains are more specific, better defined and clinically actionable,” the researchers wrote. “Further, PROMIS domains demonstrated greater reliability over a broader range of symptom severity or functional impairment compared to SF-12 or SF-36.

The precise, versatile PROMIS item banks (administered either as [four- or eight-item] short forms, or computer adaptive test) have already been used as outcome measures studies and in clinical practice for symptom monitoring, as well. In addition, PROPr, and the overall mental and physical health summary scores provide reliable measures of health utility and overall HRQOL. PROMIS offers this ‘3 in 1’ combination with unparalleled precision and reliability and acceptable question burden.”

Co-investigator Istvan Mucsi, MD, PhD, further commented on the utility of the findings in a related press release.

“Up to 70% of patients with kidney failure experience persistent physical symptoms and emotional distress that substantially impair health-related quality of life. These concerns are under-reported, under-recognized and under-managed,” he said. “Our results open the doors for the use of PROPr and PROMIS tools in nephrology research and in the care of patients with kidney failure.”