American Kidney Fund Partners with the National Health Council on New Project Examining Health Disparities and Focusing on the Experience of People Living with Chronic Kidney Disease

ROCKVILLE, Md. (March 4, 2024) – The American Kidney Fund (AKF) is pleased to announce a partnership with the National Health Council (NHC) on a new research project that will provide key insights from the experiences of people with chronic kidney disease (CKD) – including those who crash into dialysis – to better elevate the urgent need for awareness and help inform the development of evidence-based, patient-centered resources. 

The project will engage people with kidney disease in a dialogue about their experiences prior to being diagnosed and while receiving a diagnosis, as well as their experiences receiving treatment for and living with kidney disease. It will focus on historically underrepresented and marginalized patients disproportionately impacted by CKD to further the organizations' collective work on health equity. One study cohort will be focused on patients affected by rare and genetic kidney disease and the second will be focused on those with the more common causes of diabetes and high blood pressure. 

There are 37 million Americans currently living with CKD and over 800,000 are living with kidney failure, which means they need to receive dialysis treatments or a kidney transplant to survive. Kidney disease is the fastest-growing non-contagious disease in this country.  Early detection and intervention are the best ways to prevent or slow down the progress of kidney disease and keep people from reaching the point of kidney failure. Unfortunately, patients with the early stages of kidney disease do not exhibit any symptoms. It is estimated that 9 out of 10 people with kidney disease do not realize they have it with many people not learning of their diagnosis until they have reached the point of kidney failure. 

"When caught early, kidney disease can often be managed with lifestyle changes, yet too many people are unaware their kidneys are in trouble and we need to better understand why this happens," said LaVarne A. Burton, President and CEO of the American Kidney Fund. "We are excited to collaborate with the National Health Council on this project to take a comprehensive look at the whole patient experience and, hopefully, identify opportunities to prevent people from 'crashing' into dialysis."

In partnership with the NHC, AKF will utilize the NHC's Patient Experience Mapping Toolbox (PEMT) to create the CKD patient experience map.

"The Patient Experience Mapping Toolbox is one of many NHC evidence-based tools used to understand the patient's experience in our health care ecosystem," said Randall Rutta, CEO of the National Health Council. "Since its development, the NHC has applied the PEMT across various disease areas and conditions to identify points of interests to shape our current health care landscape, improve health outcomes for patients and move the needle forward on health equity."  

The PEMT is a set of resources to help researchers capture patient experience data more holistically and in a standardized manner across chronic diseases. It includes project planning and data collection tools, with all patient-facing tools reviewed externally by health literacy experts and refined through patient interviews.

Through in-depth patient interviews, the project will explore:

• Signs and symptoms, progression and severity of a CKD diagnosis alongside a rare condition
• Missed opportunities in health care delivery that led to a late diagnosis (health literacy barriers, insurance issues, lack of preventative care, etc.)
• Impact of CKD and its treatment on individuals and family members, including work and personal life, mental and other health conditions, finances and other life factors/social drivers of health 
• The burden of living with or managing CKD, such as the impact on day-to-day function and quality of life over time
• Perspectives on current and future treatments for CKD

Upon conclusion of the data analysis, a report will be published by early 2025. 

Financial support for this project is provided in part by Novartis Pharmaceuticals Corporation.