AKF presents posters on IgA nephropathy focus group study and Know Your Kidneys® Numbers Tool at 2025 Spring Clinical Meetings

The American Kidney Fund (AKF) presented two posters at the National Kidney Foundation's Spring Clinical Meetings held on April 10-13 in Boston. The featured posters represented abstracts that highlight AKF initiatives. Here are summaries of the posters:

Living with IgA nephropathy: a focus group study on the patient experience 

IgA nephropathy (IgAN) is an autoimmune disease that affects around 200,000 people in the United States and causes inflammation that can lead to kidney disease and kidney failure. AKF worked to gain more insight into what it's like to live with IgAN to create and improve resources that will help people with IgAN better understand and manage their condition. 

This insight was gathered by building an IgAN focus group study. People interested in joining the group filled out a form with their demographics, IgAN diagnosis, age, race/ethnicity, gender and education level. Three participants were recruited for the focus group.

From the focus group, six main themes were identified:

Understanding: Participants rated their understanding of the connection between kidney disease and IgAN as high.

Diagnosis: Participants were diagnosed with IgAN at varying ages (6-20s), with most describing symptoms or abnormal test results after diagnosis.

Treatments: Participants mentioned treatments for IgAN included high blood pressure medicines, transplant, dialysis and consideration of clinical trials, as well as following a meal plan and working with a dietitian.

Resources: Kidney organizations and other websites were named as helpful resources. 

Impact: Common impacts of IgAN included swelling in feet and ankles, lack of energy, depression and fluctuations in treatment effectiveness.

Advice: Tips for newly diagnosed individuals included seeing a renal dietitian, following a proper diet, finding trusted information sources and seeking support from family, friends or support groups.

From these findings, AKF enhanced patient resources and web content, and will use patient feedback to develop new resources. Future research should assess the use of materials designed for patients and their effect on patient outcomes throughout their IgA nephropathy journey. 

AKF thanks Novartis Pharmaceuticals Corporation, Otsuka America Pharmaceutical, Inc. and Travere Therapeutics for their generous support of our efforts to support the IgA nephropathy patient community. 

The Know Your Kidney Numbers Tool: A personalized approach to empower patients to become active participants in their own health care 

Approximately 35.5 million (1 in 7) adults in the United States have chronic kidney disease (CKD) and most (90%) are unaware they have it. Detecting CKD early through estimated glomerular filtration rate (eGFR) and urine albumin-creatinine ratio (uACR) is critical to help prevent or delay kidney failure.  While guidelines recommend people with high blood pressure or diabetes receive both eGFR and uACR testing for diagnosis, studies show that uACR testing is underutilized. 

To increase the use of eGFR and uACR testing and empower patients to request both tests, AKF designed Know Your Kidney Numbers (KYKN), a patient-centered, personalized online CKD risk assessment tool. This tool builds a report outlining a person's kidney health status, risk of CKD, and recommended next steps, with an emphasis on following up with appropriate providers. 

In the first three months following the launch of KYKN, over 700 people completed assessments. Among these individuals, 49% were in low or moderate risk categories, suggesting that KYKN is reaching people who may benefit from early intervention and prevention strategies. In addition, respondents who indicated they did not have a uACR test result received prompts to request this test from their providers, promoting self-advocacy. 

Continued efforts to improve routine CKD assessment nationwide are needed, not only for clinicians and policymakers, but through empowering patients through tools such as Know Your Kidney Numbers.