Research Updates in Kidney and Urologic Health

NIDDK Hosts Strategic Development and Planning Meeting for National Kidney Disease Education Program

On June 28 and 29, 2001, a coalition of government health researchers and "stakeholders" in kidney disease—administrators, medical professionals, community organizers, members of kidney advocacy groups, industry and managed care representatives, business people, and patient and minority advocates—met to develop strategies for a new National Kidney Disease Education Program (NKDEP) that emulates the successful National High Blood Pressure and National Diabetes Education Programs. NKDEP will raise awareness about the seriousness of kidney disease; the importance of prevention, early diagnosis, and appropriate management; and the prevention and management of complications.

Defining the Problem

Thomas Hostetter, M.D., NKDEP director, explained at the meeting that the National Institutes of Health initiated NKDEP in response to a 1999 request from the Council of American Kidney Societies (CAKS), which cited rising rates of chronic kidney disease (CKD) in the past two decades and called for a coordinated national program to strengthen efforts to prevent disability and death from kidney disease.

More than 8 million Americans have seriously reduced kidney function. Between 1989 and 1998, the incidence of CKD almost doubled, rising from 45,000 new cases in 1989 to 87,500 new cases in 1998. These numbers reflect an incident rate that rose from 181 to 320 new cases per million population. These increases appear to parallel the rising prevalence of diabetes, the leading cause of CKD.

The increase in number of cases of kidney disease has meant that researchers have learned a great deal about kidney failure and have developed treatments to slow or stop its progress. Unfortunately, many people with progressive kidney failure have no symptoms and do not know they have it, and their health care providers are not looking for it.

Getting a Variety of Perspectives

Linda Holomah, who has kidney disease, spoke to the group about 24 years on dialysis and other experiences. She described her own confusion and depression and her family's trials in coping with the disease. Many of the health professionals in the audience thanked Ms. Holomah for conveying a clear sense of the human burden of kidney disease and commented that health care providers need to address the emotional and family issues in a patient's life as well as the physical aspects of a medical condition.

Subsequent speakers looked at the problem of kidney disease and its treatment from their various perspectives. Cynda Johnson, M.D., a primary care physician, asked the nephrology community to give other health professionals clear, consistent guidance on when and how they should refer patients with CKD. Ann Compton, R.N.C., discussed the nurse's role and described the patient education program she helped develop at her institution. Stephen Jencks, M.D., a public health administrator at the Centers for Medicare & Medicaid Services, formerly the Health Care Financing Administration, spoke about system improvement goals and the importance of building partnerships among stakeholders.

Setting Goals, Identifying the Audience

In the afternoon, participants met in discussion groups charged with answering questions and reporting back the next day. Ultimately, they recommended that minority groups, the health care providers who serve them, and family members of people with CKD be the primary audiences for the NKDEP health message.

Meeting participants looked at the factors that increase the risk of developing CKD, such as diabetes, hypertension, and racial and gender factors. African Americans have the highest incident rate at 754 per million, compared with 243 for whites. The high prevalence of diabetes and hypertension in this population contributes to the increased risk. Incident rates are also high for Asian Americans, Hispanics, and American Indians.

Selecting the Message

The planners have looked at a variety of possible messages. Participants suggested a "know your number" message similar to the one that introduced people to the concept of high cholesterol. The "number" could be a urine albumin or serum creatinine level. Other suggestions included mnemonic devices like "ABC" for albumin (in urine), blood pressure, and creatinine. Another strategy would be to introduce a six-point system for determining a person's "renal risk score." While the message requires refinement, participants agreed that it should be simple and consistent and focus on the positive note that people can take action by seeking medical advice and controlling risk factors such as diabetes and hypertension.

Developing a Strategy

NKDEP planners invited representatives from many sectors to get their input on how to reach the target audiences. Meeting participants emphasized the importance of setting evaluation measures early in the program planning process. Program developers hope to enlist leaders from minority groups, the health professions, government, business, and the media to help disseminate the message through a variety of avenues. The National Institute of Diabetes and Digestive and Kidney Diseases is also establishing partnerships with key organizations to develop joint initiatives to implement program activities and spread the program's message.

Learning From the Past

Meeting participants included representatives from diabetes and heart disease organizations not only because these conditions are related to kidney disease, but also because these groups have developed very successful health campaigns in the past. NKDEP planners hope to build on decades of experience gained from teaching the public about blood pressure, blood glucose, and cholesterol. The social marketing principles developed in those efforts will be applied to the NKDEP. Edward Roccella, Ph.D., of the National High Blood Pressure Education Program, emphasized the importance of achieving consensus and delivering one clear, consistent message. Charles Clark, M.D., of the National Diabetes Education Program, advised program planners to consult with members of the target audience to get their input on how best to create an appropriate, meaningful, and relevant message.

[Top]