Coordinating Panel

National Kidney Disease Education Program (NKDEP)
National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health

Coordinating Panel Meeting
October 24, 2008 – Natcher Building, Rooms E1/E2
Meeting Participants and Summary

I. Welcome and Introductions
Andrew Narva

Dr. Narva welcomed the participants and explained that the meeting, which used to be a gathering of stakeholders, is now a meeting of experts—all who are working on chronic kidney disease (CKD) issues and projects, advancing the public health agenda. He noted that this meeting will focus on health disparities and how NKDEP can better address them. Participants then introduced themselves.

II. Health Disparities in CKD
Keith Norris, Charles Drew University (phone)

Dr. Norris began his presentation by defining disparities in CKD in terms of the various biological/genetic, social, and cultural factors that influence differences in disease mechanism, responses to treatment, and equity in health care. He noted the financial impact of health disparities and the potential savings if minority end stage renal disease (ESRD) rates could be lowered to that of Caucasians. Statistics illustrating disparities included lower relative prevalence of CKD among minorities, compared to the higher relative prevalence of ESRD; higher rates of diabetes and hypertension among minorities; differences in response to anti-hypertensive medications; and differences in uninsured rates. Causes of disparities included institutional racism, differences in literacy, and a lack of cultural understanding.

Dr. Norris shared several possible solutions to reduce the impact of disparities in CKD, including improvements in provider-patient communication, use of evidence-based approaches, improvements in access to care, and re-conceptualization of health and health care. Specific recommendations addressed improvements in reimbursement policies, patient referrals, screenings, education, clinician accountability, and practice organization and guidelines.

• Comments. Dori Schatell stated that United States Renal Data System (USRDS) has traditionally collected race/ethnicity data on patients, but not education level or household income data. She asked how much variance in the data may be caused by poverty versus race. Dr. Norris agreed that it can be hard to measure socio-economic status (SES) because race is not a good surrogate. He said it is good to know the impact of poverty versus race and that race/ethnicity are often used as surrogates for SES, instead of a biologic determinant. He added that poor insurance profiles and lower access to care are relevant issues. USRDS data allows for use of zip codes to determine educational and income status, which can be linked to earlier stages of CKD; while analysis of National Health and Nutrition Examination Survey data show that lower income and education levels are associated with higher rates of CKD.

Dr. Narva commented that an obvious opportunity exists for NKDEP to help improve outcomes. He highlighted some of NKDEP’s current activities addressing health disparities, including the CKD pilot with community health centers, the Family Reunion Initiative and African American outreach, development of materials in Spanish and two Asian languages, and dissemination of materials through partners serving high-risk populations.

III. NKDEP’s Role in Addressing Health Disparities—A Facilitated Discussion
Frances Ferguson and Michael Briggs

Dr. Narva introduced Dr. Ferguson and Mr. Briggs as facilitators of a discussion about programmatic recommendations for NKDEP to help reduce disparities in CKD.

The discussion began with short presentations by several participants who were asked, in advance, to describe activities being implemented by their organizations that are intended to address health disparities, their organization’s use of NKDEP materials, and any ideas that NKDEP should consider.

Bessie Young, Puget Sound Health System, Seattle, WA
The health system hosts outreach events, “Kidney Healthfests,” which include screenings for proteinuria, diabetes, and glucose control and distribution of NKDEP materials. They have partnered with local kidney centers to identify patients with stages three and four CKD via a “Living Well with CKD” program; and have developed new materials, including those on nutrition, for the general population and primary care providers (PCPs). The system also has collaborated with the Washington State Department of Health to apply for a grant to establish a CKD collaborative (centers developing registries) and related metrics. Over the years approximately 65 primary health care settings have been involved in other collaboratives (e.g., diabetes, hypertension); now the health system wants to target PCPs who report/perceive that CKD testing guidelines do not exist.

• Comments. Derrick Latos said that the American College of Physicians (ACP) is working on a complicated “patient-centered home” concept. He said that tools/guidelines do exist, including the National Kidney Foundation’s KDOQI guidelines, and reminded the group that the Renal Physicians Association has created a CKD toolkit. He thinks NKDEP could be an access point for guidelines.

Marisa Soto-Rowen, El Rio Health Center, Tucson, AZ
Legislation enacted eight years ago allows qualified pharmacists in Arizona to engage in collaborative practices with restrictive prescriptive authority. El Rio serves 70,000 patients, with 15 locations including satellite centers throughout Tucson. Disease state management using three pharmacists for treatment of diabetes, hypertension, and dislipidemia serve more than 1,600 patients. Early successes include developing a database to track several interventions and outcomes. As an example, El Rio also has had the opportunity to evaluate its work by adding estimated glomerular filtration rate (eGFR) to their data collection efforts last year, which allowed the organization to use seven years of data retrospectively to determine that many patients are currently staying stable. El Rio has used NKDEP materials to encourage labs to report eGFR. El Rio has arranged for local nephrologists to speak to their providers, and the clinical pharmacists are now included in the orientation program for new providers. They also offer lectures about disease state management “pearls” for students in various clinical programs, and CKD has been incorporated into their endocrine session for local pharmacy students. Dr. Narva presented about CKD and distributed copies of NKDEP’s Explaining GFR pad, which her colleagues found very useful. Her organization is transitioning site by site into electronic medical records, which can allow for easier monitoring now that El Rio is using patient-driven scheduling to facilitate patient-centered care.

• Comments/questions. Kris Ernst asked Dr. Young and Dr. Soto-Rowen if their registries prompt routine testing of eGFR and microalbuminuria. Dr. Soto-Rowen responded negatively; Dr. Young responded positively for microalbuminuria. Dr. Soto-Rowen added that El Rio’s labs do not interface with their system at this time, so they currently need to scan in lab results. They hope to make prompting available soon.

Janice Lea, Emory University, Atlanta, GA
Through a five-city pilot program sponsored by NKDEP in 2003, a diverse group was brought together in Atlanta to carry out community education and provider education activities. Providers completed pre- and post-test surveys before and after interventions to assess awareness of risk factors and clinical practices. Long-term effectiveness has gone unmeasured because the project ended. NKDEP needs to continue educating providers, generating interest in patient education, and promoting eGFR. The program should also seek to specifically learn whether providers are properly assessing patients and making appropriate referrals.

• Comments/questions. Dr. Latos agreed that providers continue having difficulty with staging and knowing how to treat patients with CKD. He noted that coding requirements have many hospitals now incorporating eGFR reporting, and wonders if NKDEP can work with the American Hospital Association to promote awareness among coders and to get eGFR coding put in place. Dr. Latos thinks that higher reimbursements would serve as an incentive for hospital utilizing CKD codes. Teresa Casey noted that hospitals get incentives for reporting certain measures, mentioning the Reporting Hospital Quality Data for Annual Payment Update for cardiac measures and that one could be developed for CKD.

Trina Frazier, American Kidney Fund, Rockville, MD
The American Kidney Fund (AKF) offers financial assistance to patients, distributing more than $110 million (as of 2008) to patients under care for ESRD. AKF also administers the Minority Intervention Kidney Education Program (MIKE), which provides screening with over 130 community partners in many metropolitan areas, including Atlanta, Chicago, New York and Washington, DC. Since 2004, MIKE has screened more than 21,000 people with high prevalence of risk factors, eGFRs less than 60 (all labs affiliated with their screenings report eGFR), and proteinuria. AKF plans to improve follow-up activities this year through their continuous quality assurance initiative and empower patients to make an impact on family members, by enhancing education materials and by addressing access to care barriers. AKF has used NKDEP’s brochures and Family Reunion Health Guide, as well as other NIDDK materials, and is interested in co-branding materials with NIDDK. AKF has received HUD funding for an initiative that will soon be launched with the DC Housing Authority, a three-year program staffed by social workers trying to address barriers to follow-up care and access to the health care delivery system. The organization wants to determine the factors preventing people from seeking care after screening (e.g., access, insurance, drug use, other mental health issues). AKF also has increased Hispanic outreach and anticipates addressing the need for Spanish-language materials, which are needed by 40 percent of those screened.

• Comments/questions.Marva Moxey-Mims asked what recommendations are made to those who require follow-up. Ms. Frazier said AKF does not refer people directly to a nephrologist because they first need confirmation of screening results. They tell patients that they need to see a doctor or licensed professional to look at abnormalities, retest, and see if they will be diagnosed. They call participants after mailing results (to ensure receipt within five to seven days), and attempt to assess intent to see a doctor. They call again after 90 days and have a resource manual to help address barriers to care due to insurance coverage. AKF also calls all high-risk participants. When asked what is covered by AKF’s patient assistance funding, Ms. Frazier said co-payments, prescription costs, and transportation for patients on dialysis.

• Comments/questions for several speakers. Jeanne Charleston reported providers are not doing a good job making people aware that they have CKD, noting that NKDEP’s GFR pad is a good tool for them to use with patients. NKDEP should also help PCPs understand how to treat patients with CKD. Ms. Charleston reported on the success of a community-based health promotion program in Baltimore-based barber shops, where barbers have agreed to play educational DVDs on large flat-screen televisions provided via the program. Stroke-related posters have attracted the attention of patrons, leading them to ask questions or seek more information. Similar kidney-related materials would be useful in these settings, although NKDEP materials have been used by this and other community health programs in Baltimore.
  
  Dr. Soto-Rowen added that patients say materials have too many words and need more pictures. She brought examples of IHS materials that her organization uses – materials with large typefaces and quotes from patients, which are well-liked by her patients. NKDEP materials may have too much text and not have enough graphics.
  

Selecting Priorities – Evaluation Criteria for Generating Ideas
Dr. Ferguson observed that a wealth of patient education, community-level interventions, and system-level activities are taking place. She turned the discussion to generating suggestions for NKDEP to consider in future programming. Participants were asked to apply the following criteria when making suggestions:

• Addresses an urgent or widespread need
• Does not duplicate other efforts
• Does not require major inputs
• Provides partnership and collaboration opportunities
• Related to an element of the CCM
• Appropriate for NIH to lead
• Can be evaluated

Patient-level activities

• Develop health education curriculum and poster contests for children to not only help them learn about CKD and its causes, but also to enable them to serve as channels for communicating health messages to their parents. (Ms. Charleston)
• Ms. Schatell added that lessons that engage high school students in the process of developing and managing a chronic disease would be helpful.
• Dr. Soto-Rowen noted that reservation-based ESRD education for children whose grandparents are on dialysis have been successful in her area.
• Dr. Latos supports the development of classroom materials, especially those that focus on diabetes.
• Partner with organizations to ensure dissemination and use of materials in settings where patients can learn about GFR, CKD, etc., and why self-management and monitoring are important. (Bobby Wager)
• Place an emphasis on communicating to providers about the importance of tracking acute kidney injuries that may be increasing risk for ESRD. (Carlos Palant)
• Comments. Joe Vassalotti raised a concern about the effectiveness of the “If you are African American, you are at risk for kidney disease” message, versus a risk factor-based message. Ms. Basinger added that risk factor education can be overwhelming to patients and providers, and that treatment points can be useful. Ann Bullock said that IHS has been looking for ways to educate PCPs about CKD. She agreed that bullet-point cards on treating conditions are helpful and offered to share the one the IHS has developed on CKD.

Community-level activities

• Develop posters or other materials that could support the efforts of lay health educators, particularly those working in beauty shops and barber shops. (Ms. Ernst)
• Sponsor a mobile health care unit. (Ms. Charleston)

• Develop pocket-sized, interactive materials like AKF’s GFR card that is currently distributed by CVS pharmacies. Distribute them through health fairs, expos. (Ms. Frazier)
• Work with ESRD Networks to conduct community-level efforts, where dialysis centers can reach families of those with ESRD. (Dr. Kaskel)
• Possibly partner with the Virginia Quality Improvement Organization (QIO) that is developing an educational campaign (Ms. Casey)
• Comments. Dr. Narva took the opportunity to reassure participants that NKDEP will continue to recommend use of eGFR for detecting and monitoring kidney health. He also reminded the group that NKDEP does not promote CKD staging and mentioned that NKDEP is partnering with the International Federation for Clinical Chemistry to facilitate standardization of urine albumin measurement and reporting.

Additional suggestions
Dr. Latos suggested that NKDEP try to get CKD added to the list of priority conditions addressed by the US Preventive Services Task Force, stressing that conditions that are not on the list “lose out.” Dr. Narva explained that NKDEP is working on this and leads a Federal effort, the Kidney Interagency Coordinating Committee (KICC), which includes a partnership with CMS on its QIO initiative. Theresa Kuracina, educator of providers and patients, also mentioned the usefulness of NDEP’s materials.

Summary of Discussion/Next Steps
NKDEP will distribute a document that summarizes the discussion and outlines a list of next steps for NKDEP.

Lunch Break

IV. NKDEP Updates

NKDEP Overview
Eileen Newman

Dr. Narva introduced Eileen Newman as the new Associate Director and noted the value of the team effort. She thanked all the Coordinating Panel members for their contribution to NKDEP activities. She gave an overview of the topics that will be addressed in the following presentations on General Practice Dietitian Education, Community Health Center Pilot, CKD in Pediatrics, Laboratory Working Group, African American Outreach, and Web Redesign.

Ms. Newman presented on some of NKDEP’s highlights from 2008, including activities targeting diabetes educators through a partnership with the American Association of Diabetes Educators (AADE). Last March, during National Kidney Month, AADE members received an NKDEP-AADE mailing that included a cover letter from program-association leadership and NKDEP’s reference sheet on urine albumin-to-urine creatinine ratio (UACR) and eGFR. Ms. Newman also reported that Dr. Narva contributed to the association’s Position Statement on diabetic kidney disease. She described the program’s KICC activities, including work with CMS QIOs, the newsletter, and the Federal Matrix; and NKDEP’s collaboration with health plans, including Blue Cross Blue Shield of OK, Arkansas Wellness Coalition, and Aetna. Ms. Newman’s presentation ended with a review of NKDEP’s newest materials—Four Key Concepts in CKD Education, the Explaining GFR pad, the Quick Reference on UACR and GFR, and the brochure for African Americans (revision).

General Practice Dietitian Education
Eileen Newman

Ms. Newman began her presentation by explaining that NKDEP focused efforts this year on a new target audience—nutrition professionals. She reported what NKDEP learned through interviews with a panel of professionals representing nine of the American Dietetic Association’s Dietetic Practice Groups, including their perceptions on the role of dietitians in CKD management and on the primary care team, thoughts on the importance of early intervention, and the information needs of general practice dietitians who are unfamiliar with the CKD diet. The panel generated several recommendations that were published in the ADA’s publication, the Renal Nutrition Forum. Interviews elucidated a need for new CKD education materials, guidance on assessment and disease process, information that is consistent to all practice settings, and patient-friendly educational materials. Ms. Newman explained how Coordinating Panel members, Ms. Kuracina and Lois Hill, were instrumental in developing draft materials for providers and patients that would be focus-group tested the following weekend at the annual meeting of the ADA. She added that NKDEP also would be presenting a poster and staffing the NKDEP exhibit. Ms. Newman shared her excitement about moving forward with this work as she feels strongly that it will benefit dietitians and their patients.

• Comments. Dr. Larson referenced a recipe book that could serve as a good resource for dietitians, suggesting NKDEP add a link to its website. Dr. Vassalotti expressed appreciation for NKDEP’s efforts targeting nutrition professionals; Ms. Basinger added this work will help dietitians who are not comfortable educating patients about renal disease. Both agreed that there is definitely a need for CKD materials for dietitians.

The CHC-CKD Pilot: Helping Community Health Centers Improve CKD Diagnosis and Management
Anne Camp, Fair Haven Community Health Center, Fair Haven, CT

Dr. Camp began her presentation with the objectives of the pilot project, including the adoption of system changes to help improve screening, detection, and management of CKD and identify best practices for dissemination; and development of a cooperative model where CHCs design, implement, and monitor their own performance improvements with support from NKDEP. CHCs are non-profit facilities that serve 18 million people—many of whom live below the poverty line, are uninsured, or on Medicare or Medicaid and have limited access to care. Many also are racial/ethnic minorities who are disproportionately affected by diabetes, a major risk factor for CKD.

Dr. Camp outlined pilot activities, including a need assessment and a collaborative goal setting process; as well as the development of tools the group would use to facilitate their process, including a virtual office, listserv, monthly calls and reports, and in-person meetings. The established performance measures address improvements in four major areas, including screening of patients with diabetes, management of CKD, screening for complications, and the provision of CKD education. Their work is facilitated by use of a robust clinical information system, decision-support tools, and established systems for delivering care. Self-management education is a priority; local resources are used to help increase awareness and penetration of screening, and develop collaborative relationships with local nephrologists. The multi-center effort has benefited from appropriate allocation of staff resources and the support and participation of senior leadership at each center.

• Comments. Dr. Palant expressed concern about the effectiveness of compelling providers to adhere to guidelines. Drs. Camp and Narva explained that these CHCs are participating on a voluntary basis and have established systems for self-improvement. Dale Singer, noting that participants have heard about earlier NKDEP pilot programs that are no longer active, asked what will happen to this pilot when the work or funding has ended. Dr. Narva explained that the effort is long-term and that it is intended to help CHCs and NKDEP learn what works in enhancing already-established systems for delivering diabetes care. He clarified that the stipend of $5,000 only covers administrative costs to participate in the pilot. Dr. Narva thanked Dr. Camp for her efforts, commenting that she is nationally recognized for her work in CHCs.

Pediatric Screening Urinalysis
Andrew Narva

Dr. Narva began by explaining that the American Academy of Pediatrics (AAP), in 1977 and 1992, developed and published recommendations indicating that children should receive urinalysis screening four times in their lives from infancy through adolescence. In 2000, the AAP revised its guidelines to limit screening to five-year-old children and sexually active adolescents. The AAP’s Section of Nephrology has asserted that insufficient evidence exists to support urinalysis in all five-year-olds, but that urinalysis is useful for many specific at-risk groups and patients (e.g, children with diabetes, a family history of hereditary kidney disease, sustained hypertension). Most recently, the AAP Preventative Pediatric Health Care schedule dropped urinalysis at any age, without caveats.

NKDEP is working with Dr. Kaskel and Dr. Moxey-Mims to develop materials for parents about the importance of urinalysis screening for children, as well as a Frequently Asked Questions reference for pediatric primary care providers. After sharing an anecdote that illustrated the need for routine urinalysis, Dr. Kaskel introduced a guest to the group—Waa Boakye, a high school student who has been volunteering at Children’s Hospital at Montefiore (affiliated with Albert Einstein College of Medicine). Ms. Boakye shared with the group about how she is trying to educate herself and her community about kidney disease and that she hopes to become a pediatric nephrologist.

Laboratory Working Group
Nancy Accetta and Andrew Narva

Ms. Accetta discussed NKDEP’s clinical laboratory-related activities, with an emphasis on activities of NKDEP’s Laboratory Working Group (LWG). She reminded the group that NKDEP has always sought to promote routine reporting of estimated GFR (e.g., with all serum creatinine determinations) and has for several years been working on global efforts to spearhead standardization of serum creatinine measurement. She added that standardization in urine albumin measurement and reporting is a newer area of emphasis for NKDEP.

In October, NKDEP’s study on the prevalence of eGFR reporting was published; 38.4 percent of creatinine reporting labs are reporting eGFR and there is room for improvement in reporting accurate and reliable results. The LWG and its sub groups are now working on issues which have arisen as a result of standardization, including accurately estimating GFR for children and estimating kidney function for drug dosing. NKDEP’s website has new content and calculators for both the original and revised Schwartz equations for estimating GFR, and new content on dosing is currently being developed.

Ms. Accetta finished by explaining that the LWG’s urine albumin sub-group will soon be publishing a paper that outlines the issues that need addressing to facilitate standardization of urine albumin measurement and reporting, as well as an action plan proposed by the group. NIDDK will be funding some of the projects that are outlined.

• Comments. Upon questioning, Ms. Accetta and Dr. Narva explained that the revised Schwartz formula is simpler than the original one in that there are fewer variables. A new equation that has not yet been published, however, will have more variables. Dr. Moxey-Mims said that the research that supported the revised equation (CKiD) will be published in February and that NKDEP will inform the Coordinating Panel when that happens. Ms. Frazier noted that estimation of GFR using the MDRD equation is sometimes difficult when there is confusion about a patient’s race. Dr. Narva stated that the Modification of Diet in Renal Disease equation is only validated in African Americans and Caucasians but that a number of efforts are underway to validate the equation for other groups. He admitted that eGFR has its limitations, reminding the group that it is an estimate, not the actual GFR. Dr. Kaskel agreed and noted that the error can be as much as 10 percent with old Schwartz equation. Dr. Latos shared information about an initiative in West Virginia that has radiologists reviewing eGFRs closely when using contrast imaging.

African American Outreach—FY 2008 Highlights and Plans for FY 2009
Vickie Jones

This presentation addressed the goals, audiences, objectives, and details of NKDEP’s outreach to African Americans. Ms. Jones displayed the program’s “message box,” which shows the key messages and supporting points that are communicated via program activities. She reported the cities that NKDEP has targeted over the last year, which were selected based on their large African American population and relatively high prevalence of diabetes and/or high blood pressure. She described outreach efforts, including media relations, distribution of materials at community events, partnerships, and online outreach.

Ms. Jones played a radio clip of Dr. Griffin Rodgers’ interview on a popular Baltimore radio station. Betsy Singer commented on NIH’s Healthy Moments program, which has been quite successful in reaching the public through radio.

Ms. Jones briefly described plans for 2009, which are intended to: 1) broaden the campaign beyond family reunions to include other gatherings; 2) expand the audiences; and 3) meet goals of increasing awareness of risk factors and the need to get tested, while continuing to position NKDEP as a key resource for health information and tools. Key tactics and activities for 2009 will include:

• Updates to materials and the website, long lead media, more community events, additional partnerships, outreach to historically black colleges and universities, and food tips; and
• Launching and expanding a faith-based initiative of Kidney Sundays, using insights from discussions with church representatives
• Evaluation of the Family Reunion Health Guide

• Comments. After Ms. Jones’s presentation, Phyllis Payne commented that the work from the pilots really has been extended and that it has been great to see how the program has evolved over the years with the development of new materials and the expansion of target audiences. Ms. Charleston agreed, commenting that the recent work is impressive.

Website Redesign
Veronica Oleynik

This presentation addressed the goals and benefits of the website redesign, the current status of the project, the website’s audiences and organization. Ms. Oleynik briefly described the approach taken for pre-testing the website and some of the findings that are currently influencing redesign efforts. She also talked about the process of developing an in-depth user experience, including the expansion of content and improvement of content organization; as well as the value of the new patient education videos, two of which were played during the presentation. Ms. Oleynik also addressed what cannot be seen when you visit the site—efforts to promote website optimization, enhance the user experience, and ensure that the site complies with government accessibility standards. She finished by briefly describing plans for measuring the success of the website once it is re-launched.

Dr. Narva closed the meeting by thanking everyone for attending and contributing to discussion.