State of the art: Chronic kidney disease education

Abstract

It has been established for many years that early kidney disease education can play a key role in shaping outcomes of dialysis patients. A 1993 National Institutes of Health (NIH) Consensus Panel suggested that early referral to a renal team could reduce mortality, psychologically prepare the patient, and reduce a catastrophic onset of dialysis.1 Since that time, the field of nephrology has become more organized through the establishment of a classification system for what is now formally referred to as chronic kidney disease (CKD). Furthermore, guidelines have been developed to help promote early disease awareness, and clinical performance measures have been refined.2, 3

However, our outcomes are still disappointing. The most recent U.S. Renal Data System (USRDS) database reveals that only 24.5% of incident patients have seen a nephrologist for more than 12 months prior to starting dialysis, and that only approximately 40% of patients ever see a nephrologist at all before starting care for end-stage renal disease (ESRD). This translates to a burdensome and often challenging dialysis start, a decreased opportunity for a positive outcome, and an overall spike in healthcare costs as patients transition into ESRD care. What is most daunting is that among those who have never seen a nephrologist, 89% start dialysis with a central venous catheter. However, even among those patients who have seen nephrologists within a 12-month period preceding dialysis, 55% begin care with a catheter.4

Meanwhile, patients who have been followed by the nephrologist for a median of two years demonstrate limited knowledge of their disease.5 A survey of dialysis patients undertaken by the American Association of Kidney Patients (AAKP) demonstrated that patients receive a lack of uniform, thorough information about possible treatment methods; 31% of respondents said that treatment options were not well represented, and that they were only moderately satisfied with their pre-treatment education.6

Sensing the need for legislative action, the Medicare Improvements for Patients and Providers Act (MIPPA),7 Section 152(b), added kidney disease patient education services as a covered benefit for Medicare beneficiaries with stage 4 CKD. The rule for kidney disease education services was published in November, 2009 and became effective on January 1, 2010.8 Physicians, physician assistants, and nurse practitioners are eligible providers, and dialysis facilities are excluded. The rule specifies the content. It was specifically designed to provide patients with comprehensive information to help prolong or delay the need for dialysis, manage comorbidities, prevent uremic complications, and help patients participate in an informed decision-making process regarding their options for care.

Qualified persons providing kidney disease education services must also develop outcomes assessments to measure the patients' knowledge about their disease and its treatment. These assessments are intended to improve the effectiveness of preparing patients to make informed decisions about their healthcare options related to CKD and to meet the communication needs of underserved populations, including persons with disabilities, limited English proficiency, and health literacy needs.

The coupling of MIPPA 2008 incentives with the implementation of accountable care organizations (see proposed rules)8 can drive performance-based healthcare and collaboration between primary care physicians and nephrologists. This can increase emphasis on proactive intervention during the earlier stages of kidney disease. The renal community is availing itself of opportunities to improve patient outcomes, take advantages of incentives, and adapt early to changes in the healthcare delivery system. This article reviews efforts by a cross section of groups that have demonstrated forward thinking and a need to meet the challenges described above.

Through a rigorous scientific process, the RPA developed the Advanced CKD Patient Management Toolkit in 2004 (www.renalmd.org/RPA-Advanced-CKD-Patient-Management-Toolkit) to assist practitioners in implementing the recommendations included in RPA's third evidence-based clinical practice guideline, Appropriate Patient Preparation for Renal Therapy.9 The toolkit is organized into four main areas (assess, tailor, implement and evaluate) and- includes 16 categories and sets of tools for healthcare providers and kidney patients. In 2005, with technical support from the Duke Center for Clinical Health Policy Research (CCHPR), the RPA studied the use of the toolkit in two diverse nephrology practices in North Carolina over a six-month period. The toolkit was modified and re-released for dissemination to nephrology practitioners in 2006. In 2008, the RPA, in conjunction with Duke CCHPR, launched a ten-site field test of the CKD toolkit in nephrology practices around the country to determine the critical success factors for improving outcomes of patients with advanced CKD through processes delineated in the toolkit. The field test concluded in 2010, and the study results are being submitted for publication in peer-reviewed journals.

In addition, the RPA has modified a selected subset of the tools to assist primary care providers with identifying and co-managing advanced CKD patients. To test the usability and feasibility of these tools, RPA conducted an 18-month pilot study at two nephrology practices and their referring primary care practices in Chicago and Philadelphia. During the Improved Identification and Co-Management of Advanced CKD Patients pilot project that began in late 2009, the following tools were tested: CKD Screening Protocol and Recommendation on When to Refer to Nephrologist, CKD Identification and Action Plan Tool, Referring Clinician Fax Back Form, CKD Post-Consult Letter, Concise Practice Guidelines, CKD Chart Flags, and CKD Patient Diary. The RPA plans to apply the lessons learned from this project to nephrology practices across the country. The pilot test concluded in March 2011 and the results and recommendations will be published in a peer-reviewed journal.

The portal contains links to relevant parties, as well as to work the RPA has done on the matter, such as submitting comments or producing a position paper. The RPA is currently working with the Physician Consortium for Performance Improvement (PCPI) of the American Medical Association to develop additional CKD and ESRD measures.

Additionally, the RPA developed a series of tools regarding the kidney disease education benefit, including FAQs, a documentation tool, and a practice assessment tool intended to assist nephrology practitioners in determining the economic viability of providing the kidney disease education services.

The AAKP (www.aakp.org) is developing a renal e-health literacy program, the purpose of which is to identify and compare health literacy knowledge and practices among patients through e-health literacy activities. It is drawing on its vast experience with patient education in a collaborative effort involving patients and professionals alike, and is involving its patient base to identify, implement, and then evaluate successful research strategies that will improve health literacy outcomes.

Through the implementation of a web-based platform, the AAKP will address the following specific aims:

The proposed renal e-health literacy program is an innovation that moves beyond conventional static healthcare information, and represents the transition from printed-paper brochures to dynamic web-based information. Given that an increasing segment of the U.S. adult population is seeking and retrieving health information online, the program provides a timely shift for meeting patients where they are searching and interacting.

In addition to patients' ability to quickly retrieve information, renal e-health literacy materials can also be updated and tracked for their use and utility. The e-health literacy presentations developed for this program will be designed using rich, interactive, and state-of-the art Internet-based tools to engage learners in active and passive learning sessions and will appeal to diverse learner types (auditory, kinesthetic, and visual).

The AAKP is creating patient-physician education tools to improve patients' understanding of CKD, the importance of screening, their role in the treatment planning process, and adherence/compliance obstacles that they are likely to encounter. These tools will equip the care team and patients with practical strategies to overcome barriers to care.

In April 2011, the Medical Education Institute (MEI) launched a new toolkit for CKD education called, How to Have a Good Future with Kidney Disease (www.lifeoptions.org/goodfuture). Six decks of full-color slides (mainly pictures, with as few words as possible) cover Coming to Terms, Kidneys and Kidney Disease, Slowing Kidney Disease, Transplant, Dialysis and Your Lifestyle, and Your Money and Your Life to help patients to become active partners in self-management of their CKD. Each deck includes slides, speaker's script, learning objectives, a quiz, and PDF handouts for patients. The decks can be used one-on-one or for groups, for stages 3 CKD through end stage. A “Read Me First” document explains the kit, offers presentation tips, matches decks to CKD stages, offers a MIPPA CKD education benefit summary, and provides learning objectives, quiz answers, and credentials/affiliations of the multidisciplinary reviewers. The slide content is consistent with the MIPPA benefit. No outside funding supported development of this slide series.

Also in April 2011, MEI premiered the first multimedia video in a new Let's Talk About It series, called Let's Talk About Fistulas (www.lifeoptions.org/letstalk). Supported by grants from Fistula First, Amgen, and Genzyme, the three-minute video in English and Spanish focuses on why it is a good idea to get rid of a hemodialysis catheter and get a fistula or graft instead. Graphics and animations are used to explain the types of access, risks of infection, and benefits of fistulas. The primary audience is patients who are currently on dialysis using a catheter, with a secondary audience of CKD patients in doctor's offices or clinics—to encourage early fistula placement.

MEI's Kidney School (www.kidneyschool.org) and Home Dialysis Central (www.homedialysis.org) sites have both been recently completely revised and updated, with new looks and simplified navigation. Kidney School is sponsored by an exclusive, unrestricted educational grant from Fresenius Medical Care North America, and content is independent of and not influenced by its corporate sponsor. Home Dialysis Central helps patients and professionals learn about peritoneal dialysis and home hemodialysis, with information about how these options work, where to find them, what the equipment looks like, online and phone support, message boards, and much more. The site is sponsored by the AAKP, Fresenius Medical Care, Nephrology News & Issues, NxStage, Amgen, Baxter, DaVita, Satellite WellBound, Dialysis Cost Containment, Inc., DCI, ESRD Networks 8 and 13, Liberty, Multimed, Northwest Kidney Centers, Renal Advantage, and this journal, Dialysis & Transplantation. The National Nephrologist Dialysis Study, done in 2010 under the Home Dialysis Central umbrella, was presented at the American Society of Nephrology meeting in November, and a manuscript is in development.

The National Kidney Foundation (NKF) has created a model for CKD education, Your Treatment, Your Choice. In addition they have developed a continuing medical education/continuing nursing education (CME/CNE) webcast presentation and a post-test (www.kidney.org/cme). The objectives of this webcast are to discuss CKD in terms of cognitive, psychosocial, ethnic, cultural, and age-related challenges in order to identify and overcome barriers to informed choice by patients. The webcast presentation also explains the MIPPA act, discusses key precepts to adult learning, and appraises the NKF's Your Treatment, Your Choice patient education program

An example of a regional (state) initiative to improve kidney disease awareness is The Texas Campaign for Kidney Health (http://kidneyhealth.tmf.org). This is an alliance of organizations and agencies involved in prevention, education, and clinical consultation for CKD. These organizations include the Texas Department of State Health Services (DSHS), the Texas Medical Foundation (TMF) Health Quality Institute, the End Stage Renal Disease Network of Texas, the Texas Renal Coalition, and the National Kidney Foundation. This collaboration is serving as a foundation for statewide improvement and system change at the community level, participating in activities to increase screening for nephropathy, promote disease prevention and management of CKD, and provide timely and comprehensive counseling on renal replacement therapy options.

The network promotes patient engagement and the improvement of clinical processes in the treatment of CKD. Love Your Kidneys and its dual program component, Save Their Kidneys (http://savekidneys.com), provide the theme and messaging for collaborative education and outreach activities. In 2009, for example, campaign partners teamed up to develop the Diabetes Educators Lesson Plan—Save Their Kidneys! for use by health educators to demonstrate the close relationship between diabetes and CKD. The program included a lesson plan, a kidney quiz to be used for pre- and post-test comparisons, fact sheets on diabetes and kidney disease, and instructions for a hands-on patient activity demonstrating the effects of diabetes on kidney function, and how to detect early damage. The lesson plan was designed to be used along with the Diabetes Empowerment Education Program (DEEP), currently in use and promoted by Texas Diabetes Program regional Community Diabetes Projects in several regions across the state.

A faith-based toolkit for use in congregations was also developed in 2009. As an influential voice in the community, the clergy has an opportunity to educate the congregants about good healthcare and preventive measures that can change unhealthy lifestyle patterns. The toolkit provides lesson plans, educational materials on diabetes and kidney disease, and important health messages urging at-risk congregants to get tested for kidney disease. The faith-based toolkit and the diabetes educator lesson plans are two among many resources developed and used statewide under the Texas Campaign for Kidney Health to increase awareness of CKD, its risk factors, and the importance of early detection. This campaign works in concert with the Governor's appointed Chronic Kidney Disease Task Force.10

Under the umbrella of the Texas Campaign for Kidney Health, the TMF Health Quality Institute (the Medicare Quality Improvement Organization for Texas) works directly with physicians and patient advocacy groups to prevent and slow the progression of kidney disease. Currently more than 160 participating physicians (including primary care and nephrologists) statewide receive direct technical assistance from Quality Improvement Consultants to identify high-risk patients, as well as clinical evidence-based strategies to monitor, treat, and slow the progression of the disease. These practices receive direct consultation on implementation of the KDOQI clinical practice guidelines, data analysis, work-flow analysis, and development of flowcharts and/or reminders, as well as coaching on effective strategies to promote patient engagement, including patient education resources from partners including the National Kidney Disease Education Program, the NKF, the American Kidney Fund, the AAKP, and the MEI.

Additionally, the TMF Health Quality Institute works with other engaged providers including primary care physicians, nephrologists, surgeons, vascular access centers, hospitals, and dialysis centers statewide. Assistance is provided to these engaged providers through a number of avenues, including direct technical assistance, large-scale learning strategies, roundtable meetings, and discussions, as well as focused CME/CNE educative events. One example of an intervention that has been developed is a Nephrology Audit Tool, which was designed to help nephrologists identify opportunities within their practices for improvement in process to promote comprehensive and timely renal replacement therapy options for patients electing hemodialysis. A report is provided to the nephrologists identifying areas for improvement, with options to implement tools developed to address identified opportunities.

Focusing on the Rio Grande Valley, the TMF utilized a medical community approach bringing together primary care physicians, nephrologists, surgeons, hospital leaders and staff, outpatient dialysis staff, and educators. A roundtable discussion identified the need for increased vein preservation activities, which led to process changes including automating estimated glomerular filtration rate (eGFR) reporting in the laboratory information system, avoiding/reducing peripherally inserted central catheter (PICC) lines in patients with a decreased eGFR, and coaching providers on improved patient education strategies for chronic kidney disease patients.

Concurrent with physician assistance is a campaign to educate patients with diabetes on disease management and the importance of screening for CKD. Community education and outreach activities are conducted for patients at risk for CKD as well as their families and caregivers. This statewide initiative utilizes partnerships with additional stakeholders and community organizations, including the Area Agencies on Aging as well as community health workers and others to ensure a large-scale reach to beneficiaries. Working with educators statewide, the TMF Health Quality Institute additionally developed a CKD module for diabetes educators, and disseminated more than 200 CKD education toolkits produced by AKF.

The TMF has created an advisory group in Dallas that focuses on reducing the disparity in urine microalbumin rates among African-American Medicare beneficiaries with diabetes. The advisory group met monthly for a one-year intervention period, and focused on providing information and assistance to increase primary care physicians' understanding of the evidence-based guidelines on microalbumin testing and early detection of kidney damage. This group provided large-scale and focused on-site interactive education, as well as patient resources and education.

It is highly promising to witness the application of a structured, functioning CKD education process in clinical practice. Studies have shown that multidisciplinary stage 4/5 CKD clinics have been associated with lower mortality rates and slower progression to ESRD compared with traditional nephrology care.11, 12 Building on these data from clinical studies done at academic centers with large teams of doctors, nurses, dietitians, and pharmacists, private practice groups have worked to create dedicated CKD clinics that balance cost effectiveness with clinical outcomes. In particular, the Boise Kidney and Hypertension Institute in Boise, Idaho (http://boisekidney.com) has created a stage 4/5 program (The Conductor Clinic) that focuses on early vascular access placement, kidney disease education, optimizing nutrition, and improving communication with primary care physicians.

In starting their program, the doctors of Boise Kidney first established their optimal targets for surrogate measures such as acidosis, hemoglobin, phosphorous, and albumin. They then identified and invited all appropriate patients in their clinics who had stage 4/5 CKD to join the Conductor Clinic. Currently, new patients to the Conductor Clinic are given bags with information on dietary goals, a video on dialysis options, and a bracelet for protecting the non-dominant arm. Medical assistants screen for GFR changes and remind physicians to place fistulas, to consult a dietitian, and to refer to Boise Kidney's structured kidney education program. Every clinic visit results in a communication packet provided to the primary care physician; the packet includes a comprehensive note, an updated medication list, and clinic labs.

Finally, near the point of dialysis, a “new patient communication tool” is completed that provides the information needed for the transition to dialysis to occur smoothly, including details on estimated dry weight, hepatitis B vaccination, and documentation of iron levels.

Comprehensive programs like the one at Boise Kidney require few additional resources other than traditional nephrology care and are likely to result in increased patient satisfaction, improved achievement of surrogate outcomes, and potentially slower GFR decline.

The challenge to increase kidney disease awareness, help delay the progression of disease, enable patients to make more appropriate choices, and achieve a higher quality of life with better outcomes is not easy. Meeting this challenge will require collaboration by organizations, industry, payors, and patients. The incentivization created by MIPPA 2008 legislation was a good start. Tracking outcomes and creating performance-based accountability can make a difference. The innovations illustrated above are encouraging and clearly demonstrate efforts that are already leading to more optimal care. It is too early to judge the ultimate impact because many developments are still just being implemented. However, as these initiatives expand and are joined by others, clinical outcomes for our patients should improve.

The author of this review received an honorarium from the publisher for his time and expertise in preparing this article. The publisher had no input on the article; all data and composition is the work of the author.