Researchers explore feasibility of NKF Patient Network, find need for patient education
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Researchers found the National Kidney Foundation Patient Network feasible as a national registry to “inform the development of patient-centered research, care and treatments,” according to published findings.
Further, researchers noted that of patients with chronic kidney disease who participated in the study, 60% did not know their eGFR and 91% did not know their urinary albumin-to-creatinine ratio (UACR).
“In February 2021, the NKF launched the NKF Patient Network, the first U.S. kidney disease patient registry that links the patient voice on patient outcomes and experiences with clinical and laboratory data from electronic 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 throughout the continuum of CKD to enable individualized educational resources, and will facilitate research, clinical care and health policy decisions centered on patient perceptions and priorities. Ultimately, one of the major goals is to improve patient outcomes and patients’ experience with treatment for their disease.”
In a longitudinal observational cohort study, researchers evaluated patient-entered data with or without EHRs connected with collaborating health systems. The first health care system partner involved and examined was Geisinger, according to researchers.
Researchers invited patients with CKD to use the NKF Patient Network through their provider, NKF communications or a national campaign. Those who enrolled in the network self-reported data through the registry portal that was powered by the Pulse Infoframe healthie 2.0 platform. Using the platform, researchers analyzed patients’ characteristics, the feasibility of the EHR data-sharing workflow with Geisinger Health and patient perspectives on the usability of the network.
Of the 716 patients, 80 created a patient profile (mean age was 57.5 years; 51.3% were women). Responses revealed 60% of patients did not know their eGFR and 91% did not know their UACR.
“Prior studies in the U.S. and other countries have shown low awareness of CKD with more than 90% unaware of kidney dysfunction among adults with stage 3 CKD and 60% with stage 4 CKD,” Inker and colleagues wrote. “Thus, our finding of poor awareness of eGFR and UACR level is not surprising and reinforces the importance of having EHR-based laboratory values as a central tenet to the design of the network.”
Further, 53% of patients who completed the patient profile also submitted a satisfaction survey. Responses revealed that 69% reported the patient profile was “easy” or “extremely easy” to complete, 60% reported the educational resources were “useful” or “extremely useful” and 81% were “likely” or “extremely likely” to recommend the network to another patient with kidney disease.
Additional feedback showed patients found the network to be 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 enhancing care through individualized education, tips and support,” Kerry Willis, PhD, chief scientific officer of the NKF who has led the effort to develop the network, told Healio. “Data collected go beyond numbers on a spreadsheet — we want to hear about a patient’s experience living with kidney disease. The network also allows patients to connect with others and be a part of a supportive community that understands what it’s like to live with kidney disease.”
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