NKF Initiatives in Dialysis
The National Kidney Foundation (NKF) is committed to supporting individuals who receive dialysis treatment, their families and the professionals who care for them. Improving the health of individuals who receive dialysis treatment, and minimizing related complications, are main concerns of the NKF. The health, quality of care and quality of life for dialysis patients has always been, and will continue to be, a priority for the National Kidney Foundation.
The following NKF programs serve the needs of Chronic Kidney Disease (CKD) Stage 5 dialysis patients and demonstrate our strong commitment to this population.
NKF’s “People Like Us” is the fastest-growing and most influential advocacy movement for people affected by CKD, transplant candidates and recipients, living and potential donors, donor families and caregivers. “People Like Us” empowers, educates and encourages constituents to get involved on issues relating to CKD, donation and transplantation. “People Like Us” members were critical to ensuring the passage of the pre-dialysis education act in 2008 through the Take Action Network and meetings with Members of Congress.
Kidney Disease Outcomes Quality Initiative (KDOQI), the NKF's comprehensive clinical practice guideline development initiative, has produced 15 dialysis-oriented guidelines since its inception in 1997, including guidelines related to chronic kidney disease and diabetes, anemia, hemodialysis, peritoneal dialysis, vascular access, nutrition, dyslipidemia, bone metabolism, hypertension and cardiovascular disease. These guidelines continue to impact the quality of care received by thousands of patients in dialysis units around the country.
NKF has created hundreds of educational products and hundreds of patient support and motivational programs, including “Hope and Main”, the first graphic novella designed specifically for dialysis patients. Hope Street is distributed to every dialysis unit in the country and has been heralded by patients and professionals alike as a powerful educational tool.
The National Kidney Foundation's Patient & Family Council (PFC) is a membership of more than 30,000 individuals and their loved ones affected by chronic kidney disease (CKD) Stages 1 - 4, and kidney failure (CKD Stage 5). The PFC Website, www.nkfkidneypatients.org includes educational and supportive resources to empower this constituency with the information they need to be their own best advocate. Some of these resources are:
- Message board for communication among peers about a wide spectrum of topics.
- Messages of Hope, written by PFC Executive Committee members, offer powerful messages of hope on topics relevant to chronic kidney disease.
- NKF Camp Directory provides an annually updated list of camps around the country for individuals and their families affected by CKD.
Resources and Information - this section of the Website includes NKF information and publications, such as Taking Control: Money Matters for People With Chronic Kidney Disease, Dialysis Patient's Bill of Rights and Responsibilities, and NKF's "People Like Us": Long-term Care Residence Chronic Kidney Disease Checklist created by the PFC Executive Committee to ensure they provide patient-centered messages to help our constituent successfully navigate the health care system. In addition, links for older adults and caregivers, to government Websites such as Dialysis Facility Compare, Administration on Aging and State Kidney Programs are provided.
The People Like Us: Coffee House Conversations™ telephone series was developed in 2008 to provide the NKF with a vehicle to reach out to as many of our constituents around the country as possible. Providing education and support through a telephonic format, the NKF coordinates the development of monthly educational sessions that are presented by a panel of experts on topics of importance to those coping with issues associated with dialysis, CKD, transplantation and organ and tissue donation. The first four telephone sessions, held monthly beginning in October 2008, were devoted to topics addressing the new Conditions for Coverage for End Stage Renal Disease Facilities. Sessions were recorded and posted on the www.kidney.org/coffeehouse Website to ensure that this important information continues to be available and accessible.
Stepping Back Into Life (SBIL), a program to address trauma and depression, was pilot tested in 2006 in dialysis facilities in Louisiana after hurricanes Katrina and Rita to study its effectiveness in treating these symptom in dialysis patients. Efforts are underway to make this program available to dialysis patients across the country.
The NKF has participated in these Centers for Medicare and Medicaid Services (CMS) national coalitions aimed to improve care and treatment for people on dialysis.
- Kidney Community Emergency Response (KCER): Since 2005, the NKF has chaired and been actively involved with many of the KCER coalition workgroups. To ensure that patients have the information they need in language they can understand to help them adequately prepare for and respond to emergencies, NKF led the development of a Website, www.kidney.org/help devoted to patients, providing them with links, access to preparedness tools and materials, and interactive opportunities to communicate their emergency preparedness and response activities.
- End-of-Life Coalition: For the past four years, the NKF has worked with this coalition, primarily in the area of advanced care planning. We joined with this coalition to create a Website www.kidneyeol.org devoted to end of life kidney care. A survey, conducted by the NKF of patients and professionals, helped to inform the kidney disease community about important perceptions pertaining to end of life care and treatment in dialysis facilities.
- Fistula First: Since 2005, the NKF has worked actively with the Patient Services Workgroup of this coalition, developing and reviewing patient educational materials and programs toward the goal of improving the rate of AV fistulas in the U.S. The NKF’s involvement continues these ongoing coalition efforts by participating in a Technical Expert Panel to define future goals and objectives of the coalition, conducting educational presentations to inform the community of the role of patients and family members in understanding the importance of AV fistulas,. The NKF participated in the creation of a patient-focused Website devoted to AV fistulas, www.fistulafirst.org
The NKF has been partnering with Quality Improvement Organizations (QIOs) on both a national and local level in the 10 QIO states, on CKD initiatives to improve rates of AV fistula and early identification of CKD. We have provided educational sessions about CKD, as well as instruction and support to assist them in their efforts to accomplish the CKD tasks in their targeted areas.
Nutrition and Chronic Kidney Disease: The NKF partnered with the American Dietetic Association DA and others kidney disease organizations, to survey dialysis patients about their perceptions and practices related to food labels, to prepare a petition to the Food and Drug Administration to mandate the inclusion of potassium amounts on food labels. Potassium, often recommended in increased portions for the general public, can be hazardous if ingested in large amounts by individuals receiving dialysis treatment.
Information and Support: The NKF is actively empowering and engaging constituents on a daily basis around the country. We respond to an average of 1,200 telephone calls per month, to answer inquiries pertaining to CKD and dialysis issues.
- NKF has a library of dialysis-related publications available on our website and our “Kidney Kitchen” provides kidney-healthy recipes and meal plans. The NKF Online Store is now open, too! An extensive library of materials for professional education is also available.
- The pfc@kidney.org e-mail address is available for NKF constituents to pose questions about CKD and related topics. Responses are provided by NKF volunteer experts around the country specializing in CKD and nutrition, psychosocial issues, and other important areas of interest for those coping with their diagnosis.
- The pfc@listserv.kidney.org moderator-operated e-mail group list enables the PFC Executive Committee members to communicate with NKF constituents through Messages of Hope and to disseminate announcements about kidney disease-related activities offered by the NKF and in the community. Using this listserv, NKF solicits information from PFC members who provide feedback about relevant issues affecting their care and treatment such as vascular access, end-of-life care, and anemia management. Constituents’ responses inform the NKF of the perceptions of those directly affected by CKD, providing us with valuable information important to our legislative and many other initiatives.
- Be sure to visit our News and Events page to learn about local and national activities of interest. You can also help support our work.
Medicare Improvements for Patients and Providers Act (MIPPA): As an active member of the Kidney Care Partners (KCP), the NKF has been engaged in reviewing this legislation and developing recommendations regarding the implementation of this education benefit for Medicare beneficiaries with Stage IV Chronic Kidney Disease (CKD) established under Section 152(b) of the MIPPA. NKF has worked to ensure that a patient-centered focus is included in recommendations for education implementation.
KDIGO Conference on Blood Pressure Control in Dialysis Patients: KDIGO (Kidney Disease: Improving Global Outcomes) hosted a two-day controversies conference on “Blood Pressure in Chronic Kidney Disease Stage 5/ Dialysis Patients” in New York City in March 2009. Fifty nephrologists, cardiologists, and researchers participated in the conference, which began with plenary session presentations reviewing the newest research on the evaluation, natural history, pathophysiology, and clinical management of blood pressure in patients receiving renal replacement therapy.
Research efforts: Since 1968, the NKF has been awarding research grants to fellows dedicated to the study of kidney disease, and ultimately, to improve patient care and outcomes. Over the past 40 years, the total amount of NKF research funds has exceeded $73 million.
