Kidney Disease Awareness: Valuable Resources for Providers and Patients

Anya Romanowski, MS, RD


June 08, 2017


Medscape recently published an article indicating that 10% of individuals worldwide are unaware that they have kidney disease. With so many affected, where can providers turn to get more information and the essential care and treatment for their patients? We interviewed Joseph Vassalotti, MD, chief medical officer for the National Kidney Foundation (NKF), to talk about several recent campaigns launched to raise kidney awareness and a new online microsite for enrolling patients in kidney clinical trials.

Increasing CKD Awareness

Medscape: An estimated 26 million American adults have kidney disease and most don't know that they have it. Is that correct?

Dr Vassalotti: Twenty-six million adults, or approximately 10% of the population, in America have chronic kidney disease (CKD),[1] and only about 10% of those are aware of their condition, so there's low awareness of kidney disease in people who have it. We want people to understand that kidney disease is more than just a treatment. For the public, the treatment defines the disease, and one may think that kidney disease is dialysis or kidney transplantation. In the United States in 2014, there were approximately 675,000 people treated with dialysis or a kidney transplant for kidney failure; approximately 475,000 were treated with one of the forms of dialysis (whether at home or in a clinic), and about 200,000 Americans had a kidney transplant.

Interestingly, a recent survey assessment of kidney healthcare status, published in JAMA and featured on Medscape, showed a worldwide prevalence of CKD of 10%.[1] The accompanying editorial noted that a significant proportion of preventive and routine care of patients with earlier-stage CKD can be very easily provided in primary care settings. Investing in better educational tools to disseminate evidence-based techniques for prevention, recognition, and treatment of CKD for primary care practitioners may be more effective and immediately attainable than trying to increase nephrology workforce numbers.[2] Obviously, maintaining the nephrology workforce is a major concern for the leadership of fellowship programs and the specialty at large in the United States for clinical care and advancing investigation, but as far as the public health problem that CKD poses, primary care arguably has the most impact at a population level.

Clinician diagnosis of CKD drives patient awareness.[3] The challenge is defining CKD therapeutically in primary care, given the spectrum of levels of estimated glomerular filtration rate (eGFR) and albuminuria as well as the heterogeneous etiologies commonly seen in practice. There is little agreement among practitioners in pivotal areas, including the definition of CKD (particularly for the elderly with eGFR of 45-60 mL/min/1.73 m2 in the absence of albuminuria or stage G3a, A1), the key elements of primary care management of stages G1–3 CKD, the indications for nephrology consultation, and the scope of the respective roles and responsibilities of the primary care clinician and the specialist following consultation.

In the absence of consensus in the therapeutic community, CKD has less of a clinical identity for detection and management than the longer-established chronic diseases such as dyslipidemia. First, the distinction between making a diagnosis of CKD and needing to refer a patient to a nephrologist is underappreciated. Second, the majority of CKD patients in primary care practice will be managed without nephrology consultation. Last, one approach to defining the importance of detection and management of CKD in primary care is to focus on risk-factor control (diabetes and hypertension), cardiovascular risk reduction, patient safety, and indications for nephrology referral and co-management.[4,5,6] Because at least half of all drugs approved by the US Food and Drug Administration are cleared by the kidneys,[7] attention to medication management is particularly important.

Raising Kidney Awareness

Medscape: What is the NKF doing about low awareness of CKD?

Dr Vassalotti: Because detection drives awareness, addressing both the primary clinician and the patient with and at risk for CKD makes sense. CKDintercept is NKF's primary care initiative that is currently developing an awareness campaign to engage the public in understanding the importance of kidney health, particularly for those with modifiable risk conditions, such as type 2 diabetes and hypertension. We have additional programs, such CKDinform, that are included in CKDintercept.

CKDinform is a collection of evidence-based resources for primary care practitioners in CKD that was developed by the NKF's Kidney Learning Solutions in collaboration with a steering committee made up of NKF medical advisory board volunteers. These have been offered nationwide by the NKF's local medical advisory boards as grand rounds or symposia targeting the primary care audience. The NKF plans to continue to offer this format as well as explore distance- and Web-based engagement.

The Laboratory Engagement Plan, an additional part of the NKF initiative, advances a strategy to engage the US laboratory community in addressing the barriers to streamlined CKD assessment and interpretation in primary care that originated in the CKD Kidney Disease - Improving Global Outcomes (KDIGO) guideline and accompanying Kidney Disease Outcomes Quality Initiative (KDOQI) Commentary.[4] In short, goals are to simplify and harmonize CKD testing targeted to risk conditions in the primary care setting, including (1) using the name "albumin-creatinine ratio, urine" as an alias instead of the confusing term "microalbumin"; (2) harmonizing reporting units in mg/g of a random spot urine collection; (3) offering a kidney profile, which includes the albumin-creatinine ratio, urine, and the CKD EPI creatinine eGFR; and (4) assessing the impact on care of items 1-3.

NKF is developing a CKD alternative payment model that engages both primary care and nephrology under the leadership of immediate past NKF President, Dr Jeffrey Berns. An element of alternative payment models is performance measures. There are currently no CKD performance measures that link to laboratory data in either the Merit-based Incentive Payment System (MIPS) for Medicare and Medicaid or the Healthcare Effectiveness Data and Information Set (HEDIS) for commercial insurance.

Under the guidance of a Performance Measures Steering Committee and in partnership with the Physician Consortium for Performance Improvement of the American Medical Association, NKF has developed measures in two important areas of advanced CKD care, including avoidance of nonsteroidal anti-inflammatory drugs (NSAIDs) as a patient safety measure and a nephrology referral measure. Avoidance of NSAIDs should result in reduced acute kidney injury and cardiovascular side effects of these agents.[4,5] Nephrology referral has been shown to improve treatment of CKD complications, enhance access to patient-centered therapies (home dialysis and kidney transplantation), and reduce the use of hemodialysis catheters.[4,5] NKF is working to submit these measures for incorporation into MIPS as well as into NKF educational and quality-improvement activities.

On October 7, 2016, the NKF convened the CKDintercept Summit: Building a Roadmap to Reduce Preventable Kidney Disease. Chaired by the 18th US. Surgeon General, Dr Regina Benjamin, the Summit brought together senior leaders who have expertise in driving large-scale change in healthcare. The goal of the Summit was to generate a clear, cohesive strategy, a roadmap that will provide a pathway to reducing preventable kidney disease and its progression. This panel recommended solutions to overcome barriers that hinder timely diagnosis and management of CKD that were grouped under themes: (1) develop and engage a kidney-literate public; (2) increase integration of CKD interventions in primary care; (3) define CKD care-delivery economics; (4) eliminate systemic barriers to CKD interventions; and (5) approach CKD with a population health model. A white paper from the Summit will follow as well as other publicly available information.

Kidney Donation Campaigns

Medscape: Are there any other campaigns bringing awareness to kidneys and to kidney transplantation that you know of?

Dr Vassalotti: Kidney transplantation education is critical for people with kidney disease, including dialysis patients, and the public. The NKF's "The Big Ask, The Big Give" initiative provides tools and strategies to help patients find a living donor. This program also offers resources and education for those considering donation. The barrier is that many potential kidney recipients don't know how to spread the word about their need for a kidney or feel overwhelmed by the process.[8] One approach is to share the story of the potential kidney recipient, describing their unique experience with kidney failure and how much a kidney transplant would transform that journey.

Another program NKF has, in collaboration with Johns Hopkins University, is called the Live Donor Champion Program, whereby an individual with kidney failure who is awaiting a transplant has an advocate to help find potential living donors. The use of the advocate to unburden the potential kidney transplant recipient from the challenge of asking others to donate has been shown in a small, single-center study to be significantly effective compared with matched controls.[9]

The NKF Peers program also matches those considering kidney donation with trained peer mentors who have already gone through the kidney donation process, providing a place for individuals to discuss concerns and address questions. NKF Peers also connects kidney patients with each other.

In addition, NKF addressed the decades-long rise in the deceased donor kidney discard rate in the United States by convening a Consensus Conference to Decrease Kidney Discards in Baltimore, Maryland, May 18-19, 2017. The proportion of deceased donor kidneys recovered for transplant but discarded increased steadily in the United States, from 5.1% in 1988 to 19.2% by 2009. In 2015, over 100,000 patients were waiting for a deceased donor kidney, yet 3159 kidneys were discarded.[10] Dr Francis Delmonico first elegantly presented the vision for confronting the discard rate at an NKF board meeting several years ago. Seeing his vision become a reality with participation from a broad range of experts in academic and community transplantation, as well as representation by the United Network for Organ Sharing and the Centers for Medicare & Medicaid Services, is particularly fulfilling. The transplant leaders who served as conference co-chairs, Drs Stephen Pastan and Matthew Cooper, also deserve special recognition. The NKF will follow up with more information on this topic, as there will be a published conference report and other publicly available information.

NKF public policy has promoted kidney transplant advocacy for decades. One example is the immunosuppressive medication legislation that applies to individuals under the age of 65 years who cannot obtain commercial or state insurance coverage after their Medicare benefit expires 36 months after the transplant. NKF advocates for Medicare to cover immunosuppressive medications for the duration of the kidney transplant. NKF also advocates against policies that allow insurance plans to deny or limit coverage, or to charge higher premiums for organ donors for life, disability, and long-term care insurance. NKF also advocates that living organ donors be granted time off, through the Family and Medical Leave Act (FMLA), to recover from surgery. In March 2017, the Living Donor Protection Act (H.R. 1270) was introduced in the House of Representatives by Representative Jerrold Nadler (D-NY) and Representative Jaime Herrera Beutler (R-WA) to provide these protections for living organ donors.

Finally, Americans should register to donate kidneys, along with other organs, eyes, and tissue, by visiting Please don't let this vital resource go to waste. Organ, eye, and tissue donation gives people a second chance at life.

KDOQI Clinical Practice Guideline Update

Medscape: Could you talk a little about the NKF's KDOQI?

Dr Vassalotti: KDOQI has been publishing and offering free Web-based clinical practice guidelines for dialysis care since 1997. Currently these guidelines publish updates independently as well as commentaries for US adoption regarding the full spectrum of kidney diseases, based on the international guidelines published by KDIGO.

A relatively recent publication is the KDOQI Clinical Practice Guideline for Hemodialysis Adequacy: 2015 Update. KDOQI guidelines under development include the Vascular Access and the Nutrition Updates, which are both tentatively anticipated to publish in early 2018. Since the last published update in 2006, changes in patient demographics and increasing patient longevity, as well as a growing body of literature on improved care for end-stage renal disease, have renewed interest in vascular access management. The functioning arteriovenous fistula was promoted by KDOQI in the 2006 update as the optimal vascular access, but the high primary failure rate in many recent series, coupled with the minimum time to mature of about 6 weeks at best in the United States, are important limiting considerations.

Selecting the optimal access for an individual patient remains challenging. The Vascular Access update is chaired by Drs Charmaine Lok, Alexander Yevzlin, and Surendra Shenoy, reflecting NKF collaboration with other societies, including the Vascular Access Society of the Americas and the American Society of Diagnostic and Interventional Nephrology.

The Nutrition Update will provide evidence-based recommendations for assessment, prevention, and treatment of protein-energy wasting, mineral and electrolyte disorders, and other metabolic disorders associated with kidney disease, as well as provision of medical nutrition therapy. The evidence review will cover macronutrients (protein, carbohydrate, and fats/lipids), micronutrients (eg, vitamins B1, B6, C; folic acid; riboflavin; and zinc), and electrolytes (sodium, magnesium, calcium, potassium, and phosphorous, as well as net acid base intake). Research questions will be varied and include, for example, "Is there evidence to support the use of visceral protein stores (albumin, pre-albumin, transferrin, retinol-binding protein, IGF-1, creatinine) as indicators of protein nutritional status?" Populations of interest are patients in CKD stages 1-5, those on dialysis, and post-transplant, as the last update was published before the 2002 guideline that defined and stratified CKD into stages. The international, multidisciplinary workgroup is chaired by T. Alp Ikizler, MD, and Lilian Cuppari, PhD.

More Patient Resources Available

Living Well With Kidney Failure is a series of six videos by the NKF to help healthcare professionals around the country teach patients and their families about kidney failure and its treatment options. Each video has a companion booklet to provide patients with more information for further review. The videos are What Is Kidney Failure?; How Kidney Failure Affects Your Body; Kidney Transplant; Peritoneal Dialysis; Hemodialysis (home and in-center); and Living Well. The videos are intended for use in a flexible fashion as part of individual encounters, group settings, and outside of clinician visits for independent study.

NKF also has a robust public-policy advocacy to ensure that Americans have access to quality dialysis care. NKF supports the Chronic Kidney Disease Improvement in Research and Treatment Act (S. 538/HR 1130), introduced by Senators Mike Crapo (R-ID) and Ben Cardin (D-MD) and Representatives Tom Marino (R-PA) and John Lewis (D-GA). This bill promotes kidney disease research and education, and protects access to care for dialysis patients. In addition, under original Medicare, dialysis is paid for in a bundled payment to dialysis facilities meant to cover the costs of delivering treatment, home dialysis equipment, and certain dialysis-related medications and laboratory tests. NKF regularly monitors payment to dialysis facilities to ensure that patients have access to high-quality care and frequently submits public comments on how Medicare can improve quality through evidence-based quality measures, incentive programs, and patient engagement.

Medscape: Can you tell us about the new clinical trials microsite for kidney patients?

Patients and professionals can go to our website to directly search clinical trials. Patients will also find real-life stories from clinical trial participants and resources addressing common questions, such as: What is a clinical trial? Who can participate? Are clinical trials safe? The site informs patients that clinical trials offer the chance to receive treatment that may otherwise not be available, and may also help promote general knowledge or treatment of a specific condition that may benefit other patients. But clinical trial websites can be difficult for patients to understand, and it's time-consuming to sort through what may or may not be applicable to their specific disease or condition.

NKF's new microsite takes the available information from clinical trial databases and puts it into one easy place to help patients find a matching trial in their local area. The site also helps patients understand that participation in an individual clinical trial carries potential benefits and risks. The new microsite also offers a free detailed guide, entitled "Clinical Trials: What You Need to Know," available for download in both English and Spanish.

Medscape: One of the strongest advocates at your foundation is your CEO, Kevin Longino, who is a kidney transplant recipient. To have someone with such a background is important because he can really respond and relate to what patients go through and what transplant recipients are experiencing.

Dr Vassalotti: Yes. He sets a poignant example of someone who has lived with kidney disease, lived through dialysis, and was blessed by receiving a kidney transplant. He also has a family history of CKD, and in fact, his mother is currently being treated with hemodialysis. A CEO who has the vision and the business and management expertise to lead NKF, and who at the same time is open to sharing the perspective and unique narrative of the patient experience, is exceptional.

Medscape: Do you have any additional comments you would like to share?

Dr. Vassalotti: Obesity, the theme of World Kidney Day 2017, increases the risk for CKD indirectly by increasing the risk for type 2 diabetes and hypertension, and increases it directly (independent of these two risk conditions) through glomerular hyperfiltration and microinflammation. So, healthier lifestyles, physical activity, a healthy diet, and adequate sleep are all important elements to help maintain a healthy weight to prevent obesity and reduce the risk for type 2 diabetes, hypertension, and ultimately kidney disease.

Healthy diets that have been shown to reduce incident CKD are the Mediterranean and Dietary Approaches to Stop Hypertension (DASH) diets.[11,12] Working with a certified dietitian or diabetes educator is often helpful to inform an individualized meal plan that is tailored to a patient's lifestyle and medical conditions. There is existing literature about the importance of physical activity to prevent kidney disease onset and progression as well as to improve cardiovascular health. Anecdotally, I find that people often think they are too busy to increase physical activity, but no one finds themselves too busy to eat. Like nutrition, physical activity is an essential ingredient of health. Americans may know this but they must live and schedule their lives accordingly for better kidney health.

Joseph Vassalotti, MD, has disclosed the following relevant financial relationships:
Faculty member: Icahn School of Medicine at Mount Sinai
Consultant: Merck, Inc (CKD and hepatitis C)

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