Researchers explore feasibility of NKF Patient Network and find need for patient education

October 13, 2022

2 minute read


Inker and Willis report no relevant financial information.

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The researchers found the National Kidney Foundation Patient Network feasible as a national registry to “inform the development of patient-centered research, care, and treatment,” according to the published findings.

Additionally, the researchers noted that of the chronic kidney disease patients who participated in the study, 60% did not know their eGFR and 91% did not know their urine albumin to creatinine ratio (UACR).

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“In February 2021, the NKF launched the NKF Patient Network, the first U.S. kidney disease patient registry that connects patient voice about patient outcomes and experiences with clinical and laboratory data from health records. (EHR)”, Lesley A. Inker, MD, MS, from the division of nephrology at Tufts Medical Center in Boston, and colleagues wrote. They added, “The overall goal of the network is to create an interactive community of patients across the CRI continuum to enable individualized educational resources, and will facilitate research, clinical care and policy decisions. healthcare centered on patients’ perceptions and priorities. Ultimately, one of the main goals is to improve patient outcomes and the patient experience with the treatment of their disease. »

In a longitudinal observational cohort study, researchers assessed data entered by patients with or without EHRs linked to collaborating health systems. According to the researchers, the first health system partner involved and examined was Geisinger.

Researchers invited CKD patients to use the NKF Patient Network through their provider, NKF communications, or a national campaign. Those who registered for the network self-reported their data through the registry portal powered by the Pulse Infoframe healthie 2.0 platform. Using the platform, researchers analyzed patient characteristics, feasibility of the EHR data sharing workflow with Geisinger Health, and patient perspectives on network usability.

Of the 716 patients, 80 created a patient profile (mean age 57.5 years; 51.3% were female). Responses revealed that 60% of patients did not know their eGFR and 91% did not know their UACR.

“Previous studies in the United States and other countries have shown low awareness of CKD with more than 90% unaware of kidney dysfunction in adults with stage 3 CKD and 60% unaware ‘Stage 4 IRC’, Inker and colleagues wrote. “Thus, our finding of poor knowledge of the eGFR and UACR level is not surprising and reinforces the importance of having DSE-based laboratory values ​​as a central tenet of network design.”

In addition, 53% of patients who completed the patient profile also submitted a satisfaction survey. Responses revealed that 69% said the patient profile was “easy” or “extremely easy” to complete, 60% said the educational resources were “useful” or “extremely useful” and 81% were “likely” or “extremely likely” to recommend the network to another patient with kidney failure.

Additional feedback showed that patients found the network welcoming and educational, but some educational resources were not patient-friendly.

“The NKF Patient Network is a one-stop-shop for kidney resources, focused on improving care through individualized education, counseling and support,” Kerry Willis, PhD, the NKF scientific director who led efforts to develop the network, told Healio. “The data collected goes beyond numbers on a spreadsheet — we want to hear about the experience of a patient living with kidney disease. The network also allows patients to connect with others and become part of a supportive community that understands what it is like to live with kidney disease.

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