“In God we trust, all others bring data”
—From The Elements of Statistical Learning, commonly attributed to W. Edwards Deming
A cup half full is technically 4 ounces if you’re pouring milk, 125 ml if you’re in Paris, or 8 tablespoons if you’re unwrapping sticks of butter for a cookie recipe. Or, a cup half full may not be about exact measurement at all, but a reference to your current outlook on life.
From clinical exam to clinical performance measures
The recent Clinical Journal of the American Society of Nephrology (CJASN) featured “Quality Measures for Dialysis: Time for a Balanced Scorecard” by Alan Kliger.1 In this article Dr. Kliger highlights how data is critical to the practice of medicine in general and to nephrology in particular. Early dialysis was provided based on the clinical exam of patients, but objective clinical values such as BUN, creatinine, and potassium were embraced as they became available. Guidance for the adequacy of dialysis treatment migrated from clinical judgment to Kt/V after John Sargent and Frank Gotch demonstrated the association of Kt/V and survival from analysis of the National Cooperative Dialysis Study data. As a result, nephrology as a specialty has valued data as an objective measure of the quality of patient care.
Lab values and calculated rates and ratios are the firm foundation of quality measures in dialysis today. Such metrics are embedded in the Kidney Disease Outcomes Quality Initiative (KDOQI) and the Kidney Disease: Improving Global Outcomes (KDIGO) clinical practice guidelines (CPGs) and provide the goals and threshold measures for clinical performance measures (CPMs). As Dr. Kliger points out in his CJASN article, these objective metrics guide quality improvement projects and provide patient data on “good” quality of care.
CPMs are the building blocks of CMS and payer incentive and reimbursement programs like the ESRD Quality Incentive Program (QIP), the Physician Quality Reporting System (PQRS), and the new merit-based incentive payment system (MIPS) composite score. The danger, as Dr. Kliger points out, is that we run the risk of “teaching to the test.” As providers and caregivers are we too focused on the numbers?
Half full or half empty?
On the cup half empty side, I wonder if this data-centered approach is part of the decline in interest in nephrology as a subspecialty. In July Dr. Melanie Hoenig’s article, “Share Your Passion for Nephrology: Ten Tips to Invigorate Attending Round and Precepting Sessions,” appeared in the American Journal of Kidney Disease (AJKD).2 Dr. Hoenig notes that the negative impressions internal medicine residents have about nephrology include “anxiety related to complex electrolyte cases” and negative perceptions about dialysis.
Some themes from Dr. Hoenig’s tips include walking into a dialysis facility to see where patients are receiving care. It is not a time to attend a QAI meeting, but a time to look around at the patients who are receiving treatment and the staff who are providing care. She suggests taking stock of the wide variety of fistulas and grafts that are the lifeline accesses for patients receiving treatment. The vascular access for each patient is an anatomy lesson and a personal journey of surgery, procedures, cannulation, and self-care. She also recommends a visit to a home-therapies facility to wear a peritoneal dialysis (PD) training apron.
My favorite Hoenig tip is to tell memorable patient stories to illustrate a teaching point. I can’t remember all I’ve read about Gitelman Syndrome, but I clearly remember the initial evaluation and subsequent clinic visits with my high school-aged patient who had it.
The older I get, the fewer medical facts I remember from my formal education, but I hoard crisp patient images. I remember diabetic nephropathy discussions that led to starting PD. I remember fine details of talking about a failing transplant and the return to hemodialysis with tapering immunosuppressive therapy. I know the look and feel of hundreds of vascular accesses and the look of a healthy, well-healed PD exit site. When Dr. Hoenig suggests taking medical trainees to the bedside “to model the caring and intimate connections that are afforded by the patient-physician relationship,” I know exactly what she means.
Does data make our cup half full or half empty? It is easy to see how the public face of dialysis, which includes QIP, National Healthcare Safety Network (NHSN), and 5 Star does not make dialysis treatment seem very personal or human. As providers it is hard to gauge how much these numbers reviewed on rounds and discussed in monthly QAI actually become the focus of our care. As Dr. Kliger points out and as Dr. Hoenig illustrates, probably data is only half—half of the quality and half of the story. Without the human experience patients cannot be completely cared for and trainees will not be engaged to work for it.
The human experience
One day in clinic, my patient was a 35-year-old college professor who was new to town and in need of a nephrologist. He had been followed by nephrology before for his Type 1 diabetes mellitus with retinopathy, proteinuria, and CKD stage 4. He was struggling with glucose control, so in the following months we worked with endocrine to transition to an insulin pump. Despite progressive fatigue over the next few years, he continued teaching. I saw him often as we negotiated pancreas renal transplant listing and prepared for peritoneal dialysis. Fortunately we were able to time his PD training during a summer school break and he returned to the lecture hall and lab undeterred by CCPD. About 2 years into his dialysis he was called for his transplant and I clearly remember his first return visit to the outpatient transplant clinic where he was wide-eyed and amazed about being off of insulin for the first time in 30 years. The first summer after his transplant he led a group of students abroad for summer school. I don’t remember any of his lab work, but I’m sure we plotted and tracked home glucoses, weekly Kt/V, and Cyclosporine levels. We needed the data, but in the end it was there to serve as a means to his beautiful human experience.
“There is no rule of thumb, no formula, for the treatment of renal failure. In the final analysis its successful accomplishment depends more frequently upon experience and the clinical trial than upon the slide rule.”
—John P. Merrill, The Treatment of Renal Failure, second edition, 1965
Dugan Maddux, MD, FACP, is the Vice President for CKD Initiatives for FMC-NA. Before her foray into the business side of medicine, Dr. Maddux spent 18 years practicing nephrology in Danville, Virginia. During this time, she and her husband, Dr. Frank Maddux, developed a nephrology-focused Electronic Health Record. She and Frank also developed Voice Expeditions, which features the Nephrology Oral History project, a collection of interviews of the early dialysis pioneers.
- Kliger, A. Quality Measures for Dialysis: Time for a Balanced Scorecard. Clin J Am Soc Nephrol. Published online before print August 2015, doi: 2215/CJN.06010615.
- Hoenig, M. Share Your Passion for Nephrology: Ten Tips to Invigorate Attending Round and Precepting Sessions. Am J Kidney Dis. 66(1):28-32