National Kidney Disease Education Program (NKDEP)
National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health
NKDEP Coordinating Panel
NKDEP Program Staff
Panelists and Presenters
The focus of the meeting is the translation of chronic kidney disease (CKD) research findings to the community. Last year, NIDDK launched a research initiative to test approaches to translate CKD-related scientific evidence into measures that will reduce the burden of CKD by creating a linkage between interventions that improve care and their routine implementation in daily clinical practice. Activities to date include a workshop on translating CKD research into improved clinical outcomes and planning grants (R34) for translating CKD research into improved clinical outcomes. The grants focus on T2 translational research. The projects are designed to test the effectiveness of interventions for the prevention, treatment, and management of CKD that have a high likelihood of being widely adopted and sustained in a wide range of health care settings and by individuals and communities at highest risk.
Five projects were funded and are currently initiating their activities. Dr. Narva stated that there were many high-quality proposals reflecting the depth and range of the translational research community. He thanked Dr. Star for his support of the Funding Opportunity Announcement (FOA) and expressed hope that there will be more opportunity for this type of research in the future.
|T1 Translation: Basic science discoveries used to develop new treatments.
T2 Translation: Testing use of proven therapies in clinical practice and community settings.
Health IT Enhanced for CKD in Safety-Net Primary Care
The management of CKD in vulnerable patients is challenging, especially in safety-net settings with limited resources. San Francisco General Hospital provides services to an underserved population—61 percent have public insurance and 30 percent have no insurance.
The proposed interventions are all based on constructs embedded in the Social Cognitive Theory, such as improving self efficacy and behavioral capability, changing expectations, and providing reinforcement. The study will explore the impact of three interventions through a randomized controlled trial: 1) a registry-based intervention that identifies patients with CKD, notifies their providers of their CKD status, increases patient awareness through the provision of CKD educational materials, and provides decision support to providers to enhance management; 2) an enhanced CKD registry that provides real-time pharmacy claims data; and 3) augmenting the enhanced registry with a patient-oriented, automated telephone self-management (ATSM) program, which will offer patient education and self-management tools and use action planning and motivational interviewing. The study will also assess the sustainability of these interventions. Patients will be recruited from two hospital-based primary care clinics and eight community-based clinics.
The ATSM will automatically call patients and provide education and self-management tools. Patients will also be able to do simple queries that will be referred to a health coach, who will call the patient back and address their concerns and questions. The health coach will be a trained community health worker.
The researchers are conducting a review of existing educational materials, which will be included in the registry. However, the researchers expect that simply providing information to clinicians will not result in behavior change. The more intensive interventions are intended to promote behavior change.
The primary clinical outcome measure will be blood pressure. Secondary outcome measurements include: change in HbA1c; change in urine albumin-to-creatinine ratio and protein creatinine ratio; changes in serum creatinine (eGFR); changes in body mass index; quality of life/functional status; number of nephrology referrals; and initiation of renal replacement therapy (RRT).
There will also be behavioral outcomes for both patients (CKD awareness, patient activation, medication adherence, and communication with providers) and providers (CKD awareness, ACE/ARB prescription, achieving National Kidney Foundation (NFK) CKD guidelines, and communication with patients). Sustainability will be assessed using the RE-AIM framework, which looks at reach, effectiveness, adoption, implementation, and maintenance.
|Examples of Interventions|
|Providers: registry notification and decision support; dissemination of NFK guidelines; academic detailing/feedback.
Patients: NKDEP materials; self-management tools and ATSM; motivational interviewing; action planning; health coach.
Improving CKD Detection and Care in a High-Risk, Underserved Population
The study is a collaboration between the University of Texas Southwestern Medical Center and the Parkland Health and Hospital Systems. Parkland is a safety-net hospital that serves 1.5 million patients per year. On the central campus there are 165 specialty/subspecialty clinics including one CKD clinic. The health system also includes 11 community-based primary care clinics. The challenges in treating patients with CKD within the system include: late diagnosis of CKD; limited time for effective interventions; limited opportunity for RRT modality selection; high use of central venous catheters for dialysis; and kidney transplantation late in end-stage renal disease (ESRD) care. The study seeks to address these challenges by improving the integration of services between the primary care clinics and the nephrology clinic.
The Parkland Intelligent e-Coordination and Evaluation System (PIECES) will play an important role in the study. This technology platform augments the EHR, allowing it to be used as a clinical tool to guide care. In real time, PIECES is able to identify patients with specific conditions, risk stratify according to risk models, coordinate activities through an electronic user interface, and monitor clinical outcomes. PIECES will screen EHRs for both identified and unidentified CKD patients and notify providers.
The specific aims of the study include: 1) detect chronic kidney disease in a high-risk population; 2) implement interventions proven to slow progress of CKD and treat associated conditions; and 3) prepare patients for RRT. The proposed outcomes include blood pressure control one year after implementation of PIECES and secondary outcomes based on established guidelines. The comparison group will be patients with CKD not enrolled in the study.
By linking patients with the nephrology clinic, the researchers hope to improve care. Currently, for those CKD patients that are not receiving care at the nephrology clinic, 81 percent start dialysis with a catheter. Patients will be referred for a transplant when PIECES identifies an eGFR < 30.
The project will also have an educational component that will complement each of the three study aims. Patients will be targeted through health fairs, screenings, and informational materials. Outreach efforts to the community will include materials for foundations, partnerships with professional organizations, and collaboration with the media, including the Hispanic media. Health care providers will be offered diagnostic tools and referral information.
|Possible Strategies to Improve CKD Care|
Decision Support Interventions to Improve Renal Replacement Therapy Preparation
Most ERSD patients are not well prepared for RRT, which is associated with poor outcomes. These late, poorly informed decisions are more common among ethnic/racial minorities—resulting in higher morbidity and mortality and less access to transplant. This study, conducted by Johns Hopkins Medical Institutions, will explore informed, shared decision making (SDM) to improve RRT preparation. The goal of SDM is to get patients to engage in self management to slow CKD progression and engage patients in preparation for RRT. In particular, the goals of SDM for RRT are to ensure that patients have:
It is important to note that families also have an important role in any decisions.
There are specific barriers to SDM. These include: poor multidisciplinary support; poor health care provider skills; lack of timely engagement; poor family engagement; and a lack of tailored and patient-centered educational resources to support SDM.
The study will explore sustainability of effective interventions in various health care delivery settings (e.g., safety-net clinics, VA clinics, academically affiliated private practice). Specifically, the study will explore the effectiveness and sustainability of integrating system and provider decision support interventions to improve RRT outcomes. The hypothesis is that system and provider decision support interventions can be integrated and feasibly delivered, and that they will be effective in improving practice-level indicators of RRT preparation. In addition, the study is designed to explore the incremental effectiveness of tailored patient-centered decision support delivered jointly with system and provider decision support to improve RRT preparation outcomes, compared to system and provider support alone.
Two studies are being conducted. One is an observational study exploring the feasibility and sustainability of implementing system- and provider-level interventions to improve SDM about renal replacement therapy preparation. The other is a randomized controlled trial testing the effectiveness of patient-directed SDM interventions to improve renal replacement therapy preparation. The interventions are conducted at various levels. At the system level, letters are sent out to nephrology practices and primary care providers (PCPs), with the goal of improving PCP and nephrologist collaboration with RRT preparation. The intervention will also target other health care providers, such as nurses and physician assistants (PAs). The letter for PCPs is designed to engage these providers in RRT preparation activities. It is adapted from NKDEP materials. The letters are sent for all patients in the practice with an eGFR < 20. Nephrologists will receive SDM skills training. Patients will receive tailored educational materials.
The SDM skills training, based on the Ottawa Decision Support Tutorial, includes information on how to develop a partnership with the patient, explore patient preferences in decision making, ascertain patient concerns and expectations, identify choice and evaluate research evidence, clearly communicate the impact of decisions, resolve conflict, and involve other health professionals, family, and other partners as appropriate. The intervention is also designed to educate providers on Medicare Improvements for Patients and Provider Act of 2008 (MIPPA) benefits.
To engage and educate patients, a video depicting patients and families describing their experience with RRT will be used. Patients will also be provided a book that details the available evidence on the differences between treatment choices.
|Shared Decision Making|
|Decisions that are shared by doctor and patient and informed by best evidence, not only about risk and benefits but also about patient-specific characteristics and values.|
Medication Intervention in Transitional Care to Optimize CKD Outcomes and Costs
The study is a collaboration between Providence Sacred Health Medical Center and Children's Hospital, University of Washington School of Medicine, and the Washington State University College of Nursing. The study focuses on hospitalized patients with CKD and how to improve clinical outcomes and reduce hospital readmissions. Medicare patients with kidney failure are tied with those who have heart failure for the highest rates of 30-day hospital readmissions. In a 3-year study of statewide data from all hospitals in Washington State, patients admitted with a primary diagnosis of kidney disease (e.g., CKD, dialysis, transplant) had the highest rates of repeat hospitalization and the greatest risk of death if they were readmitted compared to a full spectrum of patients admitted with other diagnoses. Yet, sparse attention has been given to reducing readmissions among the CKD population.
The study builds on a previous study of a medication information transfer (MIT) intervention. In the earlier study, which included 33 patients with CKD, only one of the patients that received MIT had an acute care encounter. Of those that did not receive MIT, seven patients had nine acute care encounters. Reducing the number of acute care encounters can result in significant cost savings.
The goal of the study is to pilot test the effectiveness of a MIT intervention to improve clinical outcomes in patients with CKD. The intervention is designed to resolve medication discrepancies in transitions of care. Medication discrepancies are common at discharge. Preliminary data compiled by the researchers indicated that 96 percent of CKD patients had a mean of 7.5 discrepancies at discharge.
The intervention, which will take place in the patient's home, will be conducted by a pharmacist within five days of discharge. It will cover the five important components of the self-management model: assessment, advice, agreement, assistance, and arrangements. An important aspect of the intervention is the focus on clear communication. This includes use of plain language (i.e., elimination of medical jargon) and a focus on culturally appropriate communication, which understands and considers the patient's practices and beliefs.
An electronic data collection system will be used. An important aspect of this system is a research participant interface that facilitates the collection of data and eliminates the possibility of many data collection errors that result from the use of paper surveys. A similar interface is used for providers.
Acute Care Utilization
CKD Risk Factors and Complications
Navigating the Challenges of Chronic Kidney Disease
This project, conducted by the Cleveland Clinic, will create a CKD patient navigator program based on a successful model that has been used with oncology patients. The intervention will target patients in CKD stages 3b-4. In addition, an EHR-based enhanced personal health record (PHR) will be used to disseminate CKD stage-specific goals of care and other CKD-related information based on the Chronic Care Model. A randomized clinical trial using a factorial design is being used to investigate these two interventions.
The patient navigator has various roles. They identify and help patients overcome system- and individual-level barriers to stage-specific CKD care. They also provide specific CKD health education, create a personalized action plan for the patient, and coordinate care (e.g., make appointments with specialists). Patient navigators serve as an advocate and a support mechanism. They facilitate communication with the health care team, reinforce self-management skills, and provide psychosocial support. Patients will meet with their navigator on a regular basis—every 3-4 months for stage 3b patients and every 1-2 months for stage 4 patients. Contact will be tracked electronically.
For providers, the EHR's functionality includes: messaging; schedule; results; documentation; physician order entry; and best practice alerts. PCPs can track the patients that they refer to specialty care in real time through "Dr.Connect."
The "My Chart" system for patients allows them to view their health information, health reminders, and schedule. They can also renew their prescriptions and schedule appointments online. "My Chart" can be accessed via an iPhone App.
The core curriculum for the project is drawn from NKDEP and supplemented by NKF materials. Providers will also receive information on MIPPA.
The primary outcome that will be measured is mean eGFR decline over the two-year follow-up period. Other measures include: achievement of target blood pressure (<130/80 mmHg); prescription of renoprotective medications; appropriate specialty referrals; and CKD knowledge awareness.
Education Intervention Increases Patient Knowledge about CKD
Research shows that many patients with CKD are unaware of their condition, despite regular contact with health care providers, including nephrologists. For example, in a study focusing on patients and their interaction with nephrologists, 43-57 percent of patients had no knowledge of their treatment options should their kidneys fail. Approximately one-third of patients were unaware of their CKD diagnosis. Similar numbers of patients did not understand the implications of CKD, the function of the kidneys, and the terminology related to CKD (e.g., GFR). At Vanderbilt University Medical Center a study was performed and designed to pilot test the feasibility and effectiveness of a brief, physician-delivered intervention in which an educational worksheet was used to provide information to pre-dialysis CKD patients during nephrology clinic appointments.
During appointments at the nephrology continuity clinics, providers were asked to conduct a short education session with patients using a one-page information sheet that was adapted from NKDEP materials. The information sheet addresses kidney function and kidney health. The providers participating in the study attended a single, 1.0-hour didactic training session that focused on clear communication principles and provided an opportunity to practice delivery of the intervention.
As a result of the intervention, knowledge increased in almost all of the areas measured, such as awareness of CKD diagnosis, awareness of estimate of kidney function and stage of CKD, and understanding of the term GFR. In both the intervention group and the control group, knowledge of the stages of CKD was high (93% in the control, 86% in the intervention group).
|Design and Methods|
|Design: Intervention group compared to historical cohort
Setting: Nine nephrology clinics, staffed by fellows and attending physicians, and one academic center.
Participants: Over 18 years of age, CKD stages 1-5, established nephrology patients
Exclusion Criteria: Unable to understand/read English; cognitive/vision impairment, renal replacement therapy
Possible Evaluation Strategies for NKDEP Activities/Materials
The Office of the Assistant Secretary for Planning and Evaluation (ASPE) carries out evaluations of various HHS programs and activities. NKDEP asked Dr. Robinson to suggest some strategies on how its various activities could be evaluated to determine whether it is having the desired impact on the targeted audiences. In particular, ASPE was asked to consider how NKDEP's various target audiences (e.g., providers, patients, families, national organizations) are using NKDEP products.
The potential evaluation strategies vary depending on the type of intervention. For example, for NKDEP's patient education materials there are a number of strategies. These include the development of tools to assess knowledge, tracking of which tools are being used, focus groups to assess utility, self-assessment tools (e.g., tear off cards), and periodic follow-up assessments. Some interventions, such as the Family Reunion Initiative, lend themselves more to process evaluation, which focuses on the implementation process (e.g., number of reunions held, number of family members contacted, etc.). To assess partnerships, concept mapping, as well as both qualitative and quantitative evaluation measures, can be used. While these evaluation strategies may not be able to link health outcomes to NKDEP's activities, there is a possibility to measure increased knowledge and behavior change.
CKD Nutrition Program: Training for Dietitians
In collaboration with the American Dietetic Association (ADA), NKDEP developed a five-module online training (12.5 continuing education credits) for registered dietitians (RDs). Dietitians who complete all five modules will receive a certificate in CKD nutrition management. The cost of the training is $19 per module ($95 for all five modules).
The training includes a variety of learning tools such as narration, case studies, custom illustrations, graphics/charts, activities, "back to basics" reviews, links to NKDEP materials, and tests (e.g., post tests for each module and a final exam for the CKD certificate).
In addition to the online training, NKDEP is exploring other ways to reach dietitians. A roundtable was held at an ADA meeting to identify possible approaches. The feedback during the roundtable indicated that students/interns are getting little to no exposure to CKD and that educators do not have the clinical experience to provide this training. Faculty and interns have little opportunity to gain the necessary experience as few CKD patients are referred to RDs. Roundtable participants identified case studies as a useful way to educate on CKD.
NKDEP is currently adapting patient handouts focusing on diet for Spanish-speaking patients. In addition to translating the materials, they are being adapted to reflect the diet of this population. The adapted handouts will be pre-tested with patients.
A medical nutrition therapy (MNT) referral form for physicians is also being developed. The form will facilitate referrals to RDs for MNT and is adapted from NKDEP's nephrology referral form. NKDEP is obtaining feedback on the form from ADA and RDs.
NKDEP is also working to ensure that the messaging is consistent with the available evidence and that the materials are accessible to patients (e.g., seventh grade reading level). In particular, the messaging relating to blood pressure will be revised to reflect JNC 8 recommendations. Patients are advised to talk to their provider about an appropriate blood pressure goal.
Efforts to reach the Hispanic population have been focused on the following areas:
The research is designed to inform outreach efforts to this population. The findings will serve as the foundation of the communication strategy. The conversation map is a comprehensive analysis of the Spanish-language social media landscape. It is an analysis of the volume, tone, and nature of the conversations. The research indicates that there are a limited number of online outlets that encourage conversations around health that target Hispanics in Spanish. For example, the majority of health-related blogs that target Hispanics are in English. The content focuses on diabetes, cholesterol, depression, weight management, and cancer.
NKDEP also conducted a communication audit—an audit of national kidney-related communications campaigns, initiatives, and educational programs targeting Hispanics, including both patients and health care providers. The audit included government agencies, associations, foundations, the media, and health worker programs (e.g., promotoras). The audit will help NKDEP identify opportunities to collaborate and share content with other partners. The audit findings indicate that comprehensive campaigns on kidney disease that target Hispanics are not being conducted and the majority of organizations do not offer tools in Spanish. Local health departments offer no information on kidney disease, either in English or Spanish. Promotoras have proven effective in providing education to low-socioeconomic Hispanic communities.
Key informant interviews are also currently being conducted, including health care providers and program managers who are experts in serving the Hispanic community. Experts have been asked to identify the barriers providers face in working with the Hispanic community and provide insights on effective outreach and messaging.
NKDEP has developed two new Spanish-language brochures: 1) an update of the brochure designed for people at risk (Si Usted Tiene Diabetes o la Presión Alta); and 2) an adaptation of the brochure for people with CKD (La Enfermedad de los Riñones ¿Qué significa para mi?). NKDEP partnered with La Clínica del Pueblo, Proyecto Salud, and Dr. James Lash (Hispanic CRIC) to test the brochures through focus groups and in-depth interviews.
NKDEP will be refreshing the Spanish-language content on the website to increase online availability of culturally relevant and easy-to-read information.
Hispanic Communication Strategy
NKDEP will be using the research findings to develop a communication strategy designed to reach the Hispanic population.
African American Outreach
Outreach to African Americans has focused on encouraging testing, empowering health champions, and supporting new and existing partnerships. Two important tools, the Kidney Sundays Toolkit and the Family Reunion Guide will be revised in the near future to better reflect the needs of partners.
The video features real stories of people with diabetes and kidney disease and includes Dr. Griffin Rodgers, director of NIDDK, discussing NKDEP's mission and encouraging testing for those at risk. It also focuses on Kidney Sundays and the Family Reunion Initiative.
National Kidney Month
Various activities were conducted to promote National Kidney Month in 2011. The National Kidney Month webpage—one of the most popular on the NKDEP website—was redesigned to engage multiple audiences to use NKDEP resources. Dr. Rodgers and Dr. Narva conducted a national radio media tour, which secured five radio interviews on African American radio stations in Deep South markets across the Stroke Belt. In addition, three national interviews were conducted on African American radio networks and syndicated programs. A social media component was also added. Articles were placed on BlackDoctor.org and Urban Housecall and Dr. Rodgers answered questions on BlackDoctor.org and Facebook.
NKDEP will continue to pursue the following partnerships.
Materials for Special Audiences
A brochure and poster on urine albumin, developed in partnership with the American Society of Pediatric Nephrology (ASPN), explains the risk factors for pediatric kidney disease and the importance of getting a child's urine tested. A new brochure addresses high blood pressure (HBP). Co-created with the National Heart, Lung, and Blood Institute (NHLBI) and ASPN, it explains the importance of regular blood pressure measurement, steps to keep a child's blood pressure in a healthy range, and the importance of treatment.
NKDEP continues to work with the Indian Health Service (IHS) to develop materials for American Indians. A basic brochure targeting patients was co-branded in 2010. Co-branding of provider tools are in progress. These include Explaining Your Kidney Test Results (tear-off pad) and Quick Reference on GFR and UACR.
Mac Cullen, Jewel Jones
Social media are rapidly becoming an important communication vehicle for various audiences. Research indicates that physicians and other health care professionals are posting about breaking news, research, and advice related to kidney disease and CKD. Patients, caregivers, and consumers share stories of how they cope with kidney disease and share management strategies.
Twitter is being used to reach health professionals. Dr. Narva launched a Twitter page in June that is used to generate conversation and disseminate information. The page has over 100 followers and 50 people have shared content with their networks. There have been thousands of impressions. To follow Dr. Narva go to: @NarvaNKDEP on Twitter.
To reach patients and caregivers, the "Make the Kidney Connection" Facebook page www.facebook.com/MaketheKidneyConnection allows NKDEP to speak directly to this audience. A Facebook ad campaign was used to promote the page. The page has over 2,800 fans and has had over 115,000 views. NKDEP is monitoring the community so that messages and information can be tailored. The active community members are knowledgeable about kidney disease, such as the risk factors and the standard tests. Posts that generated the most impressions and engagement were open-ended questions; members tend to "like" and "share" posts with links rather than comment on them.
For 2012, NKDEP will build on these efforts with the following activities.
Laboratory Working Group
The overall mission of the Laboratory Working Group is to standardize lab assessment of CKD. The priorities over the past few years have been:
During the past 3 years the major effort has been developing a joint working group with the International Federation on Clinical Chemistry and Laboratory Medicine (IFCC) to standardize measurement and reporting of urine albumin. Studies in this area are currently being supported by NIDDK.
Kidney Interagency Coordinating Committee (KICC)
The committee was created in 1987 by Congress. The goal of the committee is to encourage cooperation, communication, and collaboration among all federal agencies involved in kidney research and other kidney-related activities. The January 2011 meeting focused on the Agency for Healthcare Research and Quality's comparative effectiveness reviews, the U.S. Preventive Services Task Force's screening guidelines for CKD, and the Health Resources and Services Agency's quality improvement initiative. The September 2011 meeting focused on efforts by the Centers for Medicare and Medicaid Services to develop CKD quality measures and ways in which interagency collaboration can support improving the quality of care.
Opportunities to Get Involved In NKDEP Activities
NKDEP partners are encouraged to share messages and resources with their constituents.
Vehicles available on the NKDEP's Get Involved webpage include:
Trina Frazier reported that the American Kidney Fund (AKF) launched a new awareness campaign in September 2011. The Pair Up campaign encourages women to learn if they are at risk for kidney disease and spread the word about kidney disease to loved ones who also may be at risk. An extensive media campaign launched the effort with many "media hits." AKF continues to promote the use of the Learn it! Check it! Live it! Toolkit, which is designed to help adults at risk for kidney disease, diabetes, or high blood pressure understand their risk factors, screening tests, and the importance of a healthy lifestyle in preventing kidney disease.
Dr. William Haley, Mayo Clinic Florida, reported that an upcoming journal article will focus on improving CKD co-management between nephrologists and PCPs. The study focused on improving communication.
Dr. Narva thanked the panel members for their ongoing support of NKDEP activities.
Page last updated: March 1, 2012