Abstract: INFO10-SA
The National Kidney Foundation (NKF) Patient Network®: 2021-2023 Results and Future Plans
Session Information
- Informational Posters - III
November 04, 2023 | Location: Exhibit Hall, Pennsylvania Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Educational Research
- No subcategory defined
Authors
- Inker, Lesley Ann, Tufts Medical Center, Boston, Massachusetts, United States
- Chaudhari, Juhi, Tufts Medical Center, Boston, Massachusetts, United States
- Ferrè, Silvia, National Kidney Foundation, New York, New York, United States
- Claudin, Rachel, National Kidney Foundation, New York, New York, United States
- Gummo, Lauren, Geisinger Health, Danville, Pennsylvania, United States
- Seiler, Christopher, Geisinger Health, Danville, Pennsylvania, United States
- Harasemiw, Oksana, University of Manitoba, Winnipeg, Manitoba, Canada
- Sharma, Aditi, Dr. T Bhanu Prasad Medical Prof Corp, Regina, Saskatchewan, Canada
- Garg, Aarti, Dr. T Bhanu Prasad Medical Prof Corp, Regina, Saskatchewan, Canada
- Mitchell, Kristi R., Health Equity Outcomes Inc., Vienna, Virginia, United States
- Prasad, Bhanu, Dr. T Bhanu Prasad Medical Prof Corp, Regina, Saskatchewan, Canada
- Tangri, Navdeep, University of Manitoba, Winnipeg, Manitoba, Canada
- Chang, Alexander R., Geisinger Health, Danville, Pennsylvania, United States
- Willis, Kerry, National Kidney Foundation, New York, New York, United States
Description
Background: The National Kidney Foundation (NKF) Patient Network® is the first kidney disease patient registry focused on patient-centered research and care throughout the continuum of chronic kidney disease (CKD). In March 2023, NKF paused patient recruitment while developing the NKF Patient Network® on a new technology platform. Here, we present the data collected from February 2021 thru March 2023, and we provide an update on the 2023-2024 plans.
Methods: The Network is a longitudinal observational cohort study of patient-entered data with or without electronic healthcare records (EHR) linkage in collaboration with health systems. People with kidney disease (any stage or type), age >17 years, were invited to join through the NKF’s outreach campaign, or referral by a provider. Patients self-enrolled into the online registry and shared their experiences and health data through a secure portal where they could find education and support. The health system partners were Geisinger in Pennsylvania, USA, and Dr. T Bhanu Prasad Medical Prof Corp in Saskatchewan, Canada.
Results: A total of 2,054 people consented (1,656 from the general public, 284 from Geisinger, 114 from Dr. Prasad’s clinic). A total of 1,416 completed at least one survey question. 58% (580/992) were women, and 85% (842/992) self-identified as White. Of the 648 who self-reported CKD stage, 11% (N=70) had stage 1 or 2 CKD, 40% (N=257) stage 3, 13% (N=86) stage 4, and 20% (N=128) stage 5 or end-stage kidney disease; 16% (N=107) did not know their stage. In terms of awareness of kidney function, 69% (453/660) reported being aware of their serum creatinine, 68% (565/828) aware of their estimated glomerular filtration rate, and 25% (205/828) aware of their urinary albumin-creatinine ratio.
Conclusion: The NKF Patient Network® will relaunch on a new user-friendly platform in early 2024. Key priorities of the Network on the new technology solution are to facilitate the enrollment, education, and retention of vulnerable populations, those with low digital readiness, and those who were not previously engaged with their kidney disease. Ultimately, the Network can assist in improving the lives of all people with kidney disease.
Funding
- Foundational support for the NKF Patient Network® was provided through a collaboration with Bayer AG. AstraZeneca and Novartis are platinum sponsors. Boehringer Ingelheim is a gold sponsor.