Patient-reported outcome measures (PROMs), including patient-reported outcomes (PROs), are one of two primary sources of data about patients on dialysis (1); the other is biologically based patient data. The Food and Drug Administration definition of a PRO is “any report coming from patients about a health condition and its treatment, without interpretation of the patient’s response by a clinician or anyone else” (2). We argue that this definition fits PROMs more generally and that PROs are a subset of that. Like other fields of medicine, in dialysis, PROMs are used as quality assessment and performance measures. Incorporating PROMs into clinical practice across medicine improves outcomes, such as patients’ survival (3). In a meta-analysis, 65% of studies provided evidence that PROMs improved processes of care (e.g., patient education and diagnoses), 47% of studies provided evidence that PROMs improved the outcomes of care (e.g., functional status), and 42% of studies provided evidence that PROMs improved satisfaction with care (4).
Because the Centers for Medicare and Medicaid Services (CMS) pays for the cost of dialysis for the vast majority of patients with ESRD, they have a significant stake in understanding the quality of that care and its outcomes. The CMS is particularly interested in patient experience with care and health-related quality of life (HRQOL) and has codified recommendations or requirements that these PROMs be collected on all patients on dialysis.
This paper outlines the major methodologic recommendations around use of PROMs in dialysis that we generated in a white paper commissioned by the Kidney Care Quality Alliance (KCQA). These recommendations were generated through a systematic review of the PROM literature and include (1) continue the use of the Kidney Disease Quality of Life 36-item version (KDQOL-36) for dialysis centers’ internal quality improvement activities and the In-Center Hemodialysis Consumer Assessment of Health Care Providers and Systems (ICH-CAHPS) measures for public dialysis center performance monitoring but promote efforts to modify these instruments by incorporating Patient Reported Outcomes Measurement Information System (PROMIS) general health items (KDQOL-36) and reducing the length of the ICH-CAHPS, (2) adopt a PROM of whether patients on dialysis have been informed about their option for transplant and all dialysis options, (3) evaluate equivalence between electronic and paper versions of PROMs before widespread use of electronic administration, (4) explore reimbursement of costs of PROM administration and training, and (5) continue development of provider trainings in PROM administration and interpretation (Table 1). These recommendations were made to the KCQA on the basis of our review and research into methodologic challenges around the use of PROMs in dialysis.
Author: Peipert, J. D., & Hays, R. D. (2017).
Source: Clinical Journal of the American Society of Nephrology.https://cjasn.asnjournals.org/content/12/11/1889