Dialysis Unplugged: When if Not Now?

On January 11, 2012 the Measure Application Partnership (MAP) of the National Quality Forum  issued a Pre-Rulemaking Report for public comment before it's submission to the to the US Department of Health and Human Services.

MAP’s primary purpose is to help the US government select performance measures for a variety of clinical states for which Medicare is the primary payer. Dialysis care is one area that MAP considered in its report.

Buried deep in this report (on page 75-77) are recommendations regarding clinical measures for dialysis patients. Elsewhere, Jeff Berns has discussed the challenges of measure development; he writes: "Nonetheless, it's hard to believe that we can't come up with some metrics at some point in time that address other aspects of care in dialysis patients (blood pressure, hypertension, hypotension, mineral and bone disease, transplantation referral, dialysis, access, use of home dialysis)."

MAP proposes that the measure set address aspects of care beyond clinical care for dialysis patients. MAP proposes that Medicare consider adding care coordination, physical and mental co morbidities, shared decision making, patient experience, and cost. However, rather than recommending that they include and report assessment of health-related quality of life, they suggest that Medicare simply adopt measuring the extent to which a facility administers a quality of life assessment. Specifically, that “NQF #0260 Physical & Mental Functioning: the percentage of dialysis patients who receive a quality of life assessment using the KDQOL-36 at least once per year” should be reported by dialysis facilities.

In addition, MAP also suggests “currently available depression screening measures be explored for application in ESRD facilities.”

MAP must be kidding, right?

Surely the nephrology community and the quality gurus should be united in measuring and reporting the quality of life of patients? I would think that the ability to provide comparisons among dialysis providers and among dialysis units within a provider would be just as important as reporting URR or hemoglobin or some other patient outcome.

Still more surprising is the eerie silence from the renal advocacy organizations and the professional societies about the importance of measuring and reporting quality of life.

If you haven’t done so already I suggest that you offer a comment to the MAP (the deadline for offering a comment is Jan 20, 212) for the inclusion of quality of life as a “patient outcome” and not a “process of care measure”. Unless, of course, you think there is no urgency in doing so.