Kidney Disease Research Updates
NKDEP Coordinating Panel Meeting Focuses on Translational Research
On November 3, 2011, the National Kidney Disease Education Program (NKDEP) Coordinating Panel met in Bethesda, MD, to review recent program achievements and discuss new directions for the NKDEP to pursue.
The NKDEP is an initiative of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health, U.S. Department of Health and Human Services. The NKDEP aims to raise awareness of the seriousness of kidney disease, the importance of testing those at high risk, and the availability of treatment to prevent or slow kidney disease. The panel is made up of representatives from national foundations, patient advocacy groups, professional organizations, and Government agencies with a focus on kidney disease.
The morning session consisted of a panel presentation and discussion on translational research that will inform NKDEP goals and programs. Members of the panel were recipients of grants designed to support research that can discover ways to raise patient and provider awareness of kidney disease and foster positive behaviors. Andrew S. Narva, M.D., F.A.C.P., director of the NKDEP, explained that the grants program provided an opportunity for collaboration between the NKDEP and the research community as well as a way to translate research findings into action.
Neil Powe, M.D., M.P.H., M.B.A., of the University of California, San Francisco, described his department’s study that will use health information technology (IT) to enhance primary care for chronic kidney disease (CKD) patients in community health clinics. The study will use social cognitive theory to help meet behavioral targets in the care of CKD patients. The study will introduce an automated CKD registry incorporating decision support, which will identify patients with CKD, send notifications to providers, and provide educational materials to patients and providers. “This proposal unites a large safety-net health system for patients at high risk for CKD to address barriers to improved CKD management,” said Dr. Powe. “Successful interventions can be extended throughout our larger healthcare system, on a wider scale in similar safety-net systems.”
Miguel Vazquez, M.D., of the University of Texas Southwestern Medical Center at Dallas, described his study designed to improve CKD detection and care in a high-risk, underserved population. The study will use an IT-enabled program to harness the electronic medical record to implement, coordinate, and monitor evidence-based interventions in the patient population. Vazquez concluded, “Successful application of this collaborative primary care/nephrology model of care, which incorporates new health information technology, has the potential to improve the care not only for minority patients in our institution but for all CKD patients in the United States.”
L. Ebony Boulware, M.D., M.P.H., F.A.C.P., of The Johns Hopkins University reported on her organization’s study using decision support interventions to improve renal replacement therapy—dialysis, transplantation, or conservative management. The study promotes shared, informed decision-making between the patient and the health care provider, so the patient will be better prepared for dialysis, transplantation, or conservative management when the time comes. “Many patients with kidney disease require renal replacement therapy,” said Dr. Boulware. “But studies show patients are often psychologically and physically unprepared for renal replacement therapy, which leads to their poor health outcomes. This project aims to help patients with chronic kidney disease get better prepared for starting renal replacement therapy.”
Katherine Tuttle, M.D., of the Providence Sacred Heart Medical Center and Children’s Hospital in Spokane, WA, described her organization’s study of a plan to provide information about medications to hospitalized patients with CKD. A requirement of the program is that the patient receive a home visit from a pharmacist within 5 days of hospital discharge. “This medication information transfer intervention in the transitional care of hospitalized CKD patients will have wide appeal for adoption by health care systems and for other chronic illnesses,” said Dr. Tuttle. “The project supports the mission of NIDDK by translating lessons learned from clinical research in CKD into improved clinical outcomes that can be readily measured and anticipated in practice.”
Joseph Nally, M.D., of the Cleveland Clinic, reported on his organization’s study designed to help patients navigate the challenges of having CKD. The program features the use of a CKD patient navigator, a person who helps the patient understand instructions from health care providers and follow those instructions. The program will also use an existing electronic personal health record (PHR) system to use electronic communication to disseminate CKD education and stage-specific goals of care for patients with moderate to severe CKD. Dr. Nally explained, “We hypothesize that an enhanced PHR will result in a more informed, activated patient than usual care.”
In the afternoon, members of the NKDEP staff reported on the program’s activities and accomplishments over the past year. Eileen Newman, M.S., R.D., reported on the NKDEP’s collaboration project with the Academy of Nutrition and Dietetics—formerly the American Dietetic Association—to produce five education modules to help general practice registered dietitians provide effective medical nutrition therapy (MNT) to CKD patients who are not on dialysis. The purpose of MNT for CKD is to maintain good nutritional status, slow progression, and treat complications. These materials are designed to distill key information about CKD and diet for registered dietitians and patients. In addition to the training modules for registered dietitians, which can be taken for continuing education units through the Academy of Nutrition and Dietetics, the nutrition project has produced a series of seven patient education fact sheets to help patients understand food labels, lab test results, and the importance of various nutrients, including protein, sodium, phosphorus, and potassium.
Newman reported that the NKDEP is conducting research to lay the groundwork for a Hispanic outreach campaign. Current efforts include looking at existing CKD materials in Spanish and exploring the possibility of using social media. Based on existing English brochures, the NKDEP has prepared two brochures in Spanish that have been adapted to appeal to a Hispanic/Latino audience.
The NKDEP will be expanding and enhancing its outreach to the African American community. Recently, Griffin P. Rodgers, M.D., M.A.C.P., director of the NIDDK, and Dr. Narva embarked on a national radio media tour of the South, a region that has been hit hard by CKD and kidney failure, to raise awareness of CKD.
Dr. Narva announced that the NKDEP’s Laboratory Working Group has had success in its mission to standardize laboratory assessment of CKD, particularly in the area of reporting glomerular filtration rate (GFR), a measure of how well the kidneys are working. Dr. Narva noted that many laboratories are not using the latest, most reliable equation for calculating GFR.
At the close of the meeting, Dr. Narva encouraged attendees to visit the “Get Involved” page on the NKDEP website at nkdep.nih.gov/get-involved.shtml. The page contains links to clinical tools, patient education materials, community outreach resources, and images that can be downloaded and used in educational presentations.
NIH Publication No. 12–4531
Page last updated June 26, 2012