By: Lillian Q. Witting, MPH, CAMP, NHC Coordinator, Research, Education & Programs 

With the start of the new year, the National Health Council (NHC) will be partnering with the American Kidney Fund (AKF) to comprehensively capture the patient experience of those living with chronic kidney disease (CKD), utilizing its evidence-based Patient Experience Mapping toolbox (PEMT). The PEMT was created to better capture patient experience data more holistically, helping researchers engage and document patients’ experiences before a diagnosis, post diagnosis, while living with and during treatment of a chronic disease.  

In the U.S., it is estimated that about 37 million adults live with chronic kidney disease (CKD).1 Once diagnosed, the complexity of management and treatment of CKD can severely impact lifestyle of patients and have dire implications for family members.2 The stress of dealing with the physical and social consequences of CKD opens an opportunity for more research to provide evidence-based, patient-centered resources. AKF strives to help patients get diagnosed early so they can work closely with their health care team to manage their condition. However, this new project looks to expand on the experience of living with CKD, potentially missed opportunities in health care delivery, examining the quality of life, and gaining perspective on current and future treatments for CKD.  

Through this project, we 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 or student life, mental health and other health conditions, finances, and other life factors/social determinants 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; and 
• Perspectives on current and future treatments for CKD.

We are thankful to Novartis for the sponsorship of this project, and the AKF for this impactful collaborative opportunity.  

1. Centers for Disease Control and Prevention. Chronic Kidney Disease: Common-Serious-Costly. https://www.cdc.gov/kidneydisease/prevention-risk/CKD-common-serious-costly.html  
2. Mayo Clinic. Chronic kidney disease. https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521