By William F. Owen, Jr., MD and Dale Singer, MHA

Chronic kidney disease (CKD) and end-stage renal disease (ESRD) affect approximately 20 million Americans and has large social and financial cost. An additional 20 million people have diseases like diabetes mellitus and/or high blood pressure that place them at risk for developing CKD and ESRD. Because of the alarming amount of kidney disease in the U.S., former Surgeon General, David Satcher, MD, PhD, challenged health officials, doctors, nurses and other health professionals to decrease the amount of kidney disease in the American population by the next decade. In addition, he challenged the medical community to better educate people with kidney disease and prepare them if dialysis or a kidney transplant is needed.

The Renal Physicians Association (RPA), a national organization comprised of kidney specialists, recognized that the care given to some people with severe CKD could be improved. By helping to educate doctors who care for people with kidney disease, the RPA hopes to improve how patients feel, their knowledge about treatments for severe kidney disease and perhaps help patients to live longer. The RPA felt that the best way to educate the teams caring for people with kidney disease, as well as the patients themselves, was to develop a single paper that described the best approaches to medical problems associated with severe kidney disease. The final report from the RPA is called a “clinical practice guideline (CPG)” and is offered in the form of a textbook with chapters describing how to manage each major problem.

Developing a CPG is a difficult and lengthy process. This is because the recommendations were developed by carefully examining all the approaches that have been published to treat problems with kidney disease, and then merging these into simple instructions of “what to do.” The RPA is proud to offer to the medical and patient community its newly completed CPG that describes how to care for adults with severe CKD – patients who are within 24 months of requiring dialysis or a transplant. We anticipate that the American Society of Pediatric Nephrology will be revising the RPA’s CPG, so that recommendations can be made for children too.

To develop the recommendations, the RPA hosted meetings between a group of kidney experts and strongly interested people from selected organizations, including the American Association of Kidney Patients (AAKP). The expert group was led by W. Kline Bolton, MD from the University of Virginia School of Medicine, a nationally recognized expert in the care of people with CKD. The AAKP’s representative was AAKP Past President, Joseph White. The team’s hard work resulted in the identification of seven particularly important targets of care for persons with severe kidney disease: (1) best ways to treat low red blood cell counts, (2) how to prevent and treat problems with the blood’s mineral content and bone strength, (3) ways to control high blood pressure, (4) proper diet, (5) how to diagnose and treat problems with cholesterol and other fats in the blood, (6) when to start dialysis treatments and (7) preparing for the effects of kidney failure on people’s jobs, lives, and families. The complete CPG, and ways for your doctor(s) to follow your progress using the CPG, are available from the RPA’s national office (Renal Physicians Association, 4701 Randolph Road, Suite 102, Rockville, MD 20852, PH: (301) 468-3515, FAX: (301) 468-3511, www.renalmd.org). The current version of the CPG is not intended for use by patients; materials for patient use based on the CPG will be developed soon.

With generous financial support from Ortho Biotech, Inc., the RPA is distributing the CPG to many of the types of doctors that see people with severe CKD, such as family practice doctors, internists, cardiologists (heart specialists), endocrinologists (specialists in diabetes), gynecologists, and of course kidney specialists. In addition, the RPA is working with Bill Haley, MD of the Mayo Clinic and other experts at Duke University Medical School to help doctors measure how well they follow the advice from the CPG. We look forward to continuing to work closely with AAKP leaders and members to improve the care of people with kidney disease by providing your doctors with the best information possible. Our new CPG will help greatly in doing this.

William F. Owen, Jr., MD, is the Chief Scientist in Baxter Healthcare Corporation's renal business. Dr. Owen is also a member of the AAKP Medical Advisory Board and serves as Immediate Past President of the Renal Physicians Association. Dale Singer, MHA, has been RPA's Executive Director for the past seven years. Prior to joining RPA, Ms. Singer managed health communications contracts in various departments at the National Institutes of Health.

This article originally appeared in the June/July 2003 issue of Kidney Beginnings: The Magazine, Vol. 2, No. 2.

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