Letter to the Editor: A Response to "Dialysis Compare" 

Life on dialysis can surely be a problem. Whether you go to a dialysis center three or more times a week, or receive home dialysis, you juggle the tasks of eating a healthy diet, taking the right medicines at the right time, dealing with complications from the dialysis treatment or from other medical conditions - it is an extraordinary life. Through it all, you make the central assumption that your doctor and the rest of your dialysis care team are doing the best they can for you.

Recently, one of our dialysis patients said to us, "This is the best dialysis unit in the state." The man in the next chair said, "How do you know that? You haven't been in any other dialysis units!" With a smile, the reply came back, "I don't need to go to any other units, I know this is the best." We discussed this for a while. We agreed that "knowing" had two levels - knowing "in the heart," and knowing "in the mind." We know things based on facts and we also know them based on feelings. Both are important and most of us operate at both levels simultaneously.

The Health Care Financing Administration (HCFA) has recently made available a web site called "Dialysis compare." (www.medicare.gov) This site has made available to the public, information about selected United States dialysis facilities. Visitors to the site can find ownership information, staff composition, staff-to-patient ratios and rates of referral for kidney transplantation. In addition, dialysis facilities are rated on several important patient outcomes, including dose of dialysis, results of anemia treatment and patient survival. Each rated dialysis facility is compared to the large national data bank of all HCFA patients, to allow for comparisons of these outcomes between dialysis units. Patient survival rates in each facility are reported as "better than expected," "as expected," or "worse than expected." We can now visit this web site to determine how our dialysis unit stacks up when compared to other facilities.

Just how useful is this information? The answer to this question depends on two important issues:

1. Do these reports contain information of use to dialysis patients and their families? While some people may be very interested in the results of anemia management, or comparisons of death rates from facility to facility, others are not sure of what these reports mean to their own particular care.
2. Is the information accurate and timely? If the data allow us to compare dialysis unit outcomes, does it give a fair picture of the quality of care delivered at the facility? The Renal Physicians Association has some concerns in this area. The data on the web site comes from reports such as the "cost report" and billing reports submitted by each facility to HCFA. The accuracy of some of the numbers, such as the staffing ratio numbers, has not been carefully evaluated. Anemia and dose of dialysis data are several years old and do not accurately reflect the current care delivered in each facility. Finally, each dialysis patient is different and therefore the composition of each dialysis unit is different than any other. In some ways, comparing outcomes in one dialysis unit to another is like comparing apples to oranges - both are fruits, but one is not "better" than the other. Statistical efforts are made in the data sets to overcome these differences. However, we remain concerned that in many ways, we still may be comparing apples to oranges. RPA believes that these outcome results may not fairly demonstrate the quality of care being delivered at each facility.

Dialysis Compare is, we believe, an important first step to providing meaningful information to the public about the quality of care delivered in individual dialysis facilities. The Renal Physicians Association has recommended an approach to HCFA that we think will make this data more accurate and understandable. Patients, families, the news media and dialysis staff should understand the limitations of the current data and help to define what other information will be useful to publish on this site.

Meanwhile, what should dialysis patients do with this information? If you choose to see what is published about your dialysis unit, we suggest that you take this information to your dialysis unit and:

1. Ask your doctor and staff why they think the dialysis unit scores are as reported.
2. Ask what quality improvement activity is being done at the facility to improve the level of care.
3. If your dialysis unit's report is average or low, ask whether the results have improved since the data were collected.
4. If your dialysis unit's report is excellent, ask what other areas for improvements have been explored by your dialysis unit staff.
5. Ask for ways in which patients can participate in quality improvement programs to improve outcomes in your dialysis unit.

We hope that dialysis patients and their families will know their dialysis unit is delivering the best care. We believe that renal physicians, dialysis care teams and patients must work together to assure excellent care and improve outcomes.

William E. Haley, MD, serves as Senior Associate Consultant, Division of Hypertension & Nephrology at the Mayo Clinic Jacksonville in Jacksonville, Florida and as Assistant Professor of Medicine, at the Mayo Medical School.

Alan Kliger, MD, is a Clinical Professor of Medicine, Yale University School of Medicine, and is Medical Director of New Haven CAPD in Connecticut.

The Dear Doctor column provides readers with an opportunity to submit renal related health questions to healthcare professionals who specialize in the area of concern. The answers are not to be construed as a diagnosis and therefore, altercations in current healthcare should not occur until the patient's physician is consulted.

This article originally appeared aakpRENALIFE, Vol. 16, No. 5, March 2001.

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