Patient-reported outcomes (PROs) are defined as measurements of any aspect of a patient’s health status that come directly from the patient (i.e., without the interpretation of the patient’s responses by a physician or anyone else) (1). Although assessment of patient wellbeing and symptom management are the foundations of clinical care, the care that is delivered to patients often falls short of meeting patients’ needs. As an example, providers are frequently unaware of the presence and severity of symptoms that their patients experience (2). The impetus to incorporate PROs into clinical trials, clinical care, and performance measurement stems from calls to place greater emphasis on the outcomes that matter most to patients. Until now, clinical trial end points and performance metrics in nephrology have been dominated by biochemical measurements (e.g., albuminuria, hemoglobin, and Kt/V) and process measures (e.g., percentage of patients with an arteriovenous fistula). These existing measures that are used to define quality care vary little across providers, or they are not fully in the control of providers (3). In both cases, they fall short of capturing what is a good outcome from the patient’s perspective. Even for interventions that are supported by high-quality evidence and endorsed by clinical practice guidelines, there is often very little information about how these interventions affect the patient’s experience.
The principle of placing greater emphasis on outcomes that matter to patients generates little controversy. However, the practical aspects of measuring PROs can seem murky. Which PROs should be measured? How should PROs be measured and recorded? What do providers do with the information? How can electronic health records support the collection and interpretation of PROs? Can the information be delivered back to clinicians in real time to help with decision making? In this Clinical Journal of the American Society of Nephrology perspective series, we present three views on patient-reported outcome measures (PROMs) from experts in this field. In the first, Ju et al. (4) discuss the considerations and challenges of selecting PROMs for clinical trials. In the second, Finkelstein et al. (5) provide recommendations for implementing PROMs in clinical care. In the third piece in this series, Peipert and Hays (6) address the methodologic challenges of PROMs from the viewpoint of dialysis facilities.
The next logical step is determining how collection of PROMs affects clinical care. In this regard, nephrology may be able to learn from the experience of others. In oncology, for example, there is emerging evidence that incorporation of PROMs into routine clinical practice can improve symptom control and patient satisfaction (7). Perhaps similar efforts will be attempted in nephrology—to measure the measures.
We hope readers will take from this series a deeper understanding of how PROMs could be used in research and clinical care to improve care, the barriers to implementation, and strategies to learn from and enhance implementation efforts.
The content of this article does not reflect the views or opinions of The American Society of Nephrology (ASN) or the Clinical Journal of the American Society of Nephrology (CJASN). Responsibility for the information and views expressed therein lies entirely with the author(s).
1. U.S. Department of Health and Human Services FDA Center for Drug Evaluation and Research; U.S. Department of Health and Human Services FDA Center for Biologics Evaluation and Research; U.S. Department of Health and Human Services FDA Center for Devices and Radiological Health: Guidance for industry: Patient-reported outcome measures: Use in medical product development to support labeling claims: Draft guidance. Health Qual Life Outcomes 4: 79, 2006
2. Weisbord SD, Fried LF, Mor MK, Resnick AL, Unruh ML, Palevsky PM, Levenson DJ, Cooksey SH, Fine MJ, Kimmel PL, Arnold RM: Renal provider recognition of symptoms in patients on maintenance hemodialysis. Clin J Am Soc Nephrol 2: 960–967, 2007
3. Wagle NW: Implementing patient-reported outcome measures. New Engl J Med Catalyst (Boston
) 2016. Available at: http://catalyst.nejm.org/implementing-proms-patient-reported-outcome-measures/
. Accessed July 19, 2017
4. Ju A, Tong A: Considerations and challenges in selecting patient-reported outcome measures for clinical tries in nephrology. Clin J Am Soc Nephrol 12: 1882–1884, 2017
5. Finkelstein FO, Finkelstein SH: PROMS and the patient on ESRD: A time to rethink our approach. Clin J Am Soc Nephrol 12: 1885–1888, 2017
6. Peipert JD, Hays RD: Using patient-reported measures in dialysis clinics. Clin J Am Soc Nephrol 12: 1889–1891, 2017
7. Kotronoulas G, Kearney N, Maguire R, Harrow A, Di Domenico D, Croy S, MacGillivray S: What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? A systematic review of controlled trials. J Clin Oncol 32: 1480–1501, 2014