National Kidney Disease Education Program (NKDEP)
National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health
NKDEP Coordinating Panel
National Institute of Diabetes and Digestive and Kidney Diseases
National Kidney Disease Education Program
Dr. Narva welcomed the attendees to this year's NKDEP Coordinating Panel meeting. He explained that in the past year, NKDEP focused most of its efforts on improving education of chronic kidney disease (CKD) patients and health care providers, as well as promoting the collaboration among Federal agencies to improve the government's response to CKD. After participant introductions, Dr. Narva introduced the morning speakers and provided an overview of their respective presentations.
On behalf of the Centers for Disease Control and Prevention's (CDC) Kidney Interest Group, Dr. Williams provided an overview of the CKD Initiative and invited participants to contact him should they have questions after the presentation.
CDC published proceedings from a 2007 Expert Panel meeting in the American Journal of Kidney Diseases' March 2009 issue. This is essential reading material, and CDC has a limited number of copies, which Dr. Williams can send upon request. Dr. Williams discussed the ten expert panel recommendations, noting that while some of these are already underway, others need to be addressed.
CDC's central premise is that prevention of CKD is key. The current burden of end stage renal disease (ESRD) is not sustainable because of the high economic and human impact. The goal is to work across the whole spectrum, starting with identifying people at high risk for CKD; identifying factors that lead to kidney damage, disease progression, and complications; and improving kidney failure treatment.
In collaboration with University of Michigan, University of San Francisco, and Johns Hopkins University, and with assistance from Dr. Paul Eggers of National Institute of Diabetes and Digestive Kidney Diseases' (NIDDK) Division of Kidney, Urologic, and Hematologic Diseases (KUH), CDC is developing the national CKD surveillance system. The aims of the surveillance project are to:
CDC has completed steps one through four and is now pilot testing and planning for integration of the data sources into other surveillance systems, such as the United States Renal Data System. Dr. Williams showed a mock evidence table with priority measure topics, explaining the extensive collaborative process used to identify each topic. Then, he explained that CDC reviewed and identified data sources for information on each measure, noting their important characteristics, including: simplicity, flexibility, data quality, acceptability, sensitivity, positive value, representativeness, timeliness, and stability.
CDC has published two interim surveillance reports on the prevalence of CKD in the general population and in the health care system; executive summaries are available upon request. CDC is now moving to a web-based system for reporting the surveillance information and has developed a comprehensive web-based prototype, which includes searchable information for the public, professionals, and media, along with downloadable graphics, data tables, and presentations. Preliminary feedback has been positive and the website is expected to launch in 2010.
CDC's CKD Health Evaluation Risk Information Sharing (CHERISH) program is designed to test the feasibility of implementing a CKD detection/screening program at eight sites in four states, to assess the degree of CKD in high-risk populations, to determine each participant's subsequent access to care, and to address the likelihood of disease progression in those with evidence of CKD. The program used logistic regression analysis and classification tree analysis to find those who would provide the best yield for screening, which included people with diabetes and/or hypertension, and those who are aged 50 and above. Dr. Williams presented some preliminary results from CHERISH, including adjusted odds ratios of undiagnosed CKD, prevalence of undiagnosed CKD, co-morbidity by CKD stages, and risk factor control by CKD stages. CDC will conduct a follow-up survey and a health provider survey.
CDC has completed two studies on the economics of CKD.
Noting that most of CDC's efforts are conducted in partnership with other organizations, Dr. Williams presented a list of partner organizations involved in its CKD Initiative, including NKDEP and NIDDK. He presented data that suggested that CKD can be prevented and that CKD stages can be reversed. CDC is contributing to raising awareness of CKD with its partners through peer-reviewed publications, scientific presentations and briefings, and World Kidney Day commemoration events.
Dr. Williams ended the presentation by summarizing the progress made on the ten expert panel recommendations by CDC and its partners in the kidney community, including NIDDK and the Centers for Medicare & Medicaid Services (CMS).
Dr. Feldman introduced the Chronic Renal Insufficiency Cohort (CRIC) study by first describing its network, which is made up of seven institutions encompassing a total of 13 recruitment sites across the United States. The Scientific and Data Coordinating Center is a separate enterprise at the University of Pennsylvania. CRIC began in 2001 after a series of workshops and deliberations within KUH. Recruitment began in 2003 after an extensive vetting process of the protocol. CRIC investigators are in the process of moving over the first major installment of data to the repository at NIDDK. The second phase of CRIC started a year ago and is funded through 2013. The primary scientific areas are: blood pressure and vascular function; cardiovascular health; genetics; health related behaviors, including quality of life and literacy; measurement of kidney function; and metabolism.
The first phase of CRIC is a research study with the primary goal of knowledge discovery. Phase two aims to leverage interactions between CRIC and other research networks to lead to additional achievements. Other goals include development of clinical trials and health promotion. CRIC ancillary studies, which are funded as part of the phase two, are mapped against these areas of interest.
CRIC participants number approximately 4,000; their ages range between 21 and 74. The study design is a cohort with a broad spectrum and severity of CKD. The estimated glomerular filtration rate (eGFR) entry criteria was between 20 and 50 to 70, depending on age. By design, the diabetic and non-diabetic components are approximately equal. Specified in the protocol, the renal outcomes include ESRD, the change in slope of eGFR, and loss of 50 percent of kidney function. Adjudicated renal outcomes include myocardial infarction, congestive heart failure, arrhythmia, stroke, and pulmonary vascular disease. Tracked every six months, the broad array of data elements includes medical history, physical measures, psychometrics, and biomarkers.
Dr. Feldman shared some key findings and observations from participant assessments at study entry:
Dr. Feldman pointed out that the study has an outstanding long-term retention of participants; 90 percent of the participants are actively engaged in the fourth year of the study. He shared the following preliminary findings from longitudinal analysis:
The potential clinical implications of these findings include:
The potential implications for communication are:
Dr. Feldman closed his presentation by highlighting some of the upcoming activities for CRIC, which include the release of the internal GFR estimating equation, expanded collaboration with NKDEP, various cross-sectional and longitudinal analyses, a genome-wide association study,and renal disease biomarkers research.
M. Teresa Casey, RD, LD
Ms. Casey opened her presentation by listing its objectives, which included a description of the CMS CKD pilot project, an update on the Fistula First Breakthrough Initiative (FFBI), the status of implementation of the Medicare Improvement for Patients and Providers Act (MIPPA), and a review of programmatic implications for NKDEP.
Quality Initiative Organization (QIO) Pilot Project
To describe the QIO pilot project, Ms. Casey compared it to the more familiar ESRD Network program. The QIOs work with healthcare providers, consumers, and stakeholder groups to refine care delivery systems. The current statement of work is theme-based; themes include beneficiary protection, patient safety, prevention (core, disparities, CKD), and care transitions. The CKD pilot started in August 2008 and will end in July 2011.
Ms. Casey shared statistics, which underscored the seriousness of CKD as a public health issue and its impact on Medicare spending. For example, CKD patients comprise approximately 8.6 percent of the Medicare population, and costs for CKD exceed 57.5 billion dollars annually. Annual savings to Medicare for each patient who does not progress to dialysis are estimated at approximately 288,000 dollars; therefore, CMS has a strong interest in improving CKD detection and care to delay the onset of kidney failure. The QIO pilot aims to improve the quality of life for people with CKD by partnering with local and national organizations to promote evidence-based care and providing assistance to physician practices. The pilot is limited to 10 states and the U. S. Virgin Islands. To date, the participating QIOs have recruited over 2,050 providers in 944 practices. The clinical focus of the pilot program is:
Other aspects include CKD care disparity reduction, health information technology, and the use of corresponding CMS initiatives. Collaboration and partnering at the national and local levels are important aspects of the project. National partners include the Renal Physician Association, National Kidney Foundation, NKDEP, American Nephrology Nurse Association, American Association of Kidney Patients, American College of Physicians Foundation, FFBI, and the Medical Education Institute.
The ultimate goal of the QIO pilot is to achieve sustainable CKD system-level changes. Each QIO is charged with either joining or establishing a coalition. The coalitions, at minimum, must consist of community health center (CHC) representatives, ESRD network organizations, health department diabetes grantees, local chapters of kidney organizations, patient representatives, provider groups and state and county government representatives. The QIOs offer on-site technical assistance, academic detailing, staff education, and educational materials. The QIOs are required to use existing educational materials and have used NKDEP's materials extensively.
Ms. Casey provided the following baseline data from 2007 for the three key measures from participating QIOs:
She showed preliminary data for the fourth quarter (reflecting the first five months) and the fifth (the first eight months), comparing CKD QIOs to non-CKD QIOs.
Ms. Casey explained that vascular access continues to be a priority for CMS. She shared current data from the FFBI dashboard, which showed significant improvement of AF fistula rates. The average prevalent AV fistula rate is 53.9 percent compared to 30 percent when the initiative started in 2003. However, the incident AV fistula rate is 13.7 percent nationally. In addition, disparities in care continue to exist. In 2007, the Caucasian AV fistula prevalent rate was 52 percent compared to 42 percent for African Americans.
Ms. Casey explained that Network 5 was awarded a separate contract to develop a plan for how FFBI can achieve a 66 percent AV fistula rate. The work done to date includes a root-case analysis, development of an analytic plan, a meeting of a technical expert panel, development of the strategic plan, a meeting of the Fistula First workgroups to begin the implementation of tactics, launch of the new FFBI website, and a poster presentation at ASN. Ms. Casey listed the seven strategies identified in the plan and various tactics developed to advance each strategy. Additional policy recommendations were made related to pay-for-performance and data flow.
The positive news is that every network increased the percentage of treatment centers that achieved the 66 percent goal since January 2007. Much work remains, however, to achieve the national goal.
MIPPA established a new Kidney Disease Education (KDE) benefit for Medicare beneficiaries with stage four CKD; a higher Medicare dialysis reimbursement rate; the ESRD Bundled Payment System; and the Quality Incentive Program (QIP), the first Medicare program that links provider quality to reimbursement.
CMS has published three rules regarding KDE, with the final rule published in November 2009, although public comments are accepted through the end of December 2009. The new KDE regulation can be found at http://frwebgate.access.gpo.gov/cgi-bin/getpage.cgi?dbname=2009_register&page=62003&position=all . Medicare will pay for education services that cover the management of co-morbidities, including for purposes of delaying the need for dialysis; prevention of uremic complications; each option for renal replacement therapy (including at-home and in-center hemodialysis and peritoneal dialysis); vascular access options; and transplantation.
QIP ensures the quality of services delivered under the "bundled payment" by requiring CMS to promote improved ESRD patient outcomes. It establishes a mandate for payment reduction for providers of services and dialysis facilities that do not meet QIP standards.
Ms. Casey closed by outlining potential programmatic implications for NKDEP, starting with the expansion of the QIO project. CMS will seek national implementation of the QIO project and will ideally expand it to all 53 QIOs. NKDEP has provided educational materials and technical assistance to the 10 participating QIOs, which in turn have expanded the reach of NKDEP's messages by widely distributing the materials. The obvious challenge will be to figure out how to expand NKDEP's support from 10 to 53 QIOs. She hopes that NKDEP will continue to provide and enhance the community education components of the FFBI Strategic Plan, which now needs to be implemented. There may be an opportunity for NKDEP to help shape the MIPPA KDE program, especially as it pertains to the needs assessments and ways to ensure quality of the education provided under this benefit. Lastly, there is potential for NKDEP to help leverage provider interest in the QIP measures.
During the lunch break, Mr. Bhargava presented a tutorial on the use of social media to advance public health and other social cause agendas. He listed the following 10 principles for government, and showed examples of how each principle has been implemented.
Eileen Newman, Vickie Jones, Anna Zawislanski, Andrew Narva, and Michael Briggs
Ms. Newman began by noting key themes across the many NKDEP activities: expanded community outreach efforts; new focus on the urine albumin test and children at risk for CKD; emphasis on improving care for patients with CKD, as opposed to people at risk for CKD; continued support for the pilot program; and an expanded collaboration network. Ms. Newman and her colleagues presented the 2009 highlights as components of the Chronic Care Model, which continues to serve as an organizing principle for NKDEP.
Ms. Jones reported that NKDEP's community activities focused on encouraging screening for CKD primarily in the African American community. NKDEP developed a new initiative, Kidney Sundays, which encourages faith leaders to discuss CKD risk with their congregations. An overarching umbrella theme, Make the Kidney Connection, connects Kidney Sundays and the Family Reunion Initiative. NKDEP engaged various partners to help promote the initiatives and participated in several key community events, such as the Tom Joyner Family Reunion and the Stone Soul Picnics.
For self-management support, NKDEP developed and posted patient education modeling videos for health providers on a variety of topics related to CKD. This video library will expand over time to include other topics, such as diet counseling and vascular access. Ms. Zawislanski reported that NKDEP adapted its popular GFR pad for use with Chinese-, Vietnamese-, and Spanish-speaking patients, and developed a new GFR/UACR combined pad to emphasize the importance of screening with both tests. NKDEP also began the development of two new brochures for CKD patients: the first on the basics of CKD and another to caution on the use of medications and supplements. NKDEP has focused on developing educational tools for a variety of health care professionals, including pharmacists, dietitians, and pediatric providers.
NKDEP's delivery system designed activities included development of two web-based continuing medical education opportunities and the multifaceted CKD diet initiative. Ms. Newman explained that NKDEP has been developing and testing a series of educational diet materials for CKD patients and dietitians.
Dr. Narva reported on various activities that help with decision support. These included the development of a draft nephrology referral template to facilitate the transfer of patient information between primary care providers and nephrologists and an educational statement to guide drug dosing in the creatinine standardization environment. NKDEP began the revision of the Quick Reference on UACR and GFR to emphasize the importance of routine UACR monitoring for improved outcomes. Last year, NIDDK funded six studies to improve urine albumin measurement and reporting, which has become the focus on NKDEP's Laboratory Working Group. To help improve CKD care through clinical information systems, Dr. Narva began collaborating with the Indian Health Service (IHS) to include CKD measures in its electronic health record (HER) system.
NKDEP's major effort in support of health systems/organization of health care is its CHC-CKD pilot program. Mr. Briggs provided an update on its activities, including the collection and review of data, addition of two new pilot sites, and development of a blood pressure subgroup to identify strategies for improving blood pressure control.
The NKDEP team closed by highlighting new initiatives in the planning stages, including the CKD online "collaboratory" and a self-management patient-education flipchart.
Coordinating Panel Member Updates
Ann Bullock explained that Native Americans have experienced a steep decline of ESRD and IHS deserves some credit for this improvement. Because of the high burden of CKD among this population and the shortage of nephrologists, IHS' Division of Diabetes Treatment and Prevention (DDTP) is developing clinical information to help educate PCPs on CKD care. IHS created algorithm cards for different aspects of diabetes care, including CKD. She showed newly-developed cards that help explain UACR and other tests. These cards are customizable and updatable. Dr. Bullock showed a mock-up of a new web resource that DDTP is developing to organize clinical information by topic.
Dan Larson reported that the PKD Foundation will launch a new cause-branding initiative, Kidney Wise, to draw awareness and encourage behavior change with regard to CKD. Two "angel investors" donated a half-million dollars each to the PKD Foundation to develop a social entrepreneurial model, which will generate self-sustaining revenues while addressing public health concerns. The Foundation has engaged some very significant partners to date, including the Surgeon General's Office and America's Promise Alliance. The initiative will launch in March 2010.
Karen Basinger reported that the American Dietetic Association's Renal Practice Group, in joint effort with the Diabetes Practice Group, is working on developing a medical nutrition therapy (MNT) benefit education brochure for Medicare beneficiaries. The groups are also planning a series of webinars which will educate generalist dietitians on providing MNT. The webinar effort was recently approved and a sponsor identified.
Dr. Narva thanked all participants for attending the meeting, as well as for their efforts to support NKDEP throughout the year.
Page last updated: March 1, 2012