AAKP recently interviewed The Director of the National Kidney Disease Education Program (NKDEP), Thomas Hostetter, MD. Dr. Hostetter was named the first winner of AAKP’s Visionary Award at the AAKP Annual Convention this past August. 

The NKDEP was created by the National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK) to raise awareness among professionals, patients and the general public of the seriousness of kidney disease as well as the importance of its prevention, early diagnosis and appropriate management. In the near future, the program will provide several educational pieces regarding chronic kidney disease including healthcare tools and fact sheets. 

Q. How did you become involved with the NKDEP project? 

A. I had been an officer with the American Society of Nephrology. The kidney societies including the National Kidney Foundation (NKF), American Society of Nephrology (ASN), American Society of Pediatric Nephrology (ASPN), American Society of Transplantation (AST) and Polycystic Kidney Disease Research Foundation (PKDRF) had been advocating this position (the need for kidney disease education) for some time. Dr. Josephine Briggs Director of Kidney Urology & Hematology at NIDDK asked me if I would be interested. Also, progressive kidney disease has been my research interest ever since I entered nephrology.

Q. How was the idea for a National Kidney Disease Education Program formulated? Why was it deemed necessary?

A. I like to say there are three big reasons why this initiative was created. First, it is a significant health problem in this country. The numbers indicate that those with kidney failure have doubled since 1990. Further projections show that it will nearly double again by the year 2010. Second, useful therapies, when applied correctly, have been shown to halt or slow the progression of kidney disease. And third, we have not been applying these therapies as often as we should and many people out there have not been tested and are not being tested.

Q. What are some of the goals and objectives of NKDEP? 

A. The two large goals are to increase awareness among those with kidney disease and their primary healthcare providers. We hope and expect to reach both of these populations, especially those at the earliest stages of kidney disease.

Q. What kind of resources will be included in this program? For patients? For professionals?

A. We’re going to have all sorts of communication pieces including public service announcements for radio and video, posters and brochures. We also have a web site (www.nkdep.nih.gov) as part of the program. We’ll be developing some things for primary care physicians including fact sheets to make them more aware of the program and its objectives. We also want to provide materials to patient organizations to supplement some of the activities they are doing.

Q. What organizations are supporting this project? (i.e. participants in steering committees, workgroups, etc.)

A. There’s really about 25 groups total (the entire list is available on the NKDEP web site at www.nkdep.nih.gov). We are working with professional societies that deal with nephrology, general healthcare societies, patient advocacy groups and community advocacy groups, especially those in the African-American community. We have also utilized representatives from previous National Institutes of Health (NIH) initiatives on high blood pressure and diabetes. These representatives have provided insight into how to activate patients and professionals around a particular healthcare problem.

Q. What has been established or learned since the initiation of this project? Any surprises?

A. We’re going to begin some pilot programs this winter in Atlanta , Baltimore , Cleveland and Jackson , Miss. We have used focus groups of primary care physicians as well as individuals at-risk for kidney disease. I can say there is a very low awareness of kidney disease in the at-risk populations. Yet, we have also found that people take kidney disease very seriously. Our message throughout this program is simply: You have the power to prevent kidney disease.

Q. What are some of the events/activities associated with this initiative? 

A. As I mentioned, our goal is to raise public awareness of kidney disease. We’ve gone around and formed coalitions at each of the four pilot sites. We want to find out from these pilot programs what works and what doesn’t work. We hope to learn what messages are effective and how they are effective. We also expect to gain insight into how improvements can be made in laboratory reports. Many common kidney tests such as serum creatinine contain a lot of variations. We would like to develop a blood test number that leads to a more meaningful measure of kidney function. Basically, we’re trying to think of things that would make it easier for primary care physicians to test for this and to know what to do once they have found it.

Q. Will NKDEP continue indefinitely? And how will it be modified in the future?

A. We are going to do some pre and post evaluations to see if what we are doing is working. It will take some time obviously because kidney disease does not develop overnight. If we notice that fewer people are developing kidney failure, then we will consider ending the program but we anticipate that being several years away.  

Q. Any final comments?

A. We certainly support the efforts of AAKP and in particular, Kris Robinson, as part of this program. I think one of the important roles AAKP can provide is a sort of missionary role. Patients on dialysis or with transplants, who have already been through the early stages of kidney disease, can let others know about the importance of caring for the kidneys, getting tested and being alert to some of the warning signs associated with this condition.

This article originally appeared in the December 2002 issue of Kidney Beginnings: The Magazine, Vol. 1, No. 2.

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