The APOL1 gene is recognized as a kidney risk gene. APOL1-mediated kidney disease is a rapidly progressive form of proteinuria kidney disease. Although this gene is autosomal recessive the risk comes from the genotype of both parents. Compared with other chronic kidney disease patients, those of African ancestry with a confirmed APOL1 gene variant progress to dialysis 9 to 12 years earlier. APOL1-mediated kidney disease is often associated not only with proteinuria but also with a rapid decline in eGFR, earlier onset of kidney disease (including adolescence), and leads to a mean age of kidney failure in the U.S. of 45 years. Patients are often asymptomatic. Richard Knight, co-founder of the APOL-1 Alliance (https://apol1alliance.org/), provides a patient perspective on this condition.

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Arlene Bierman MD, MS, Brittany Watson MD, MPH and Jane Pederson MD, MS discuss the recent JAMA online publication Person-Centered Care Planning for People Living with or at Risk for Multiple Chronic Conditions. This paper describes a qualitative study using theme analysis from responses following a Request for Information (RFI) published in the Federal Register soliciting input on PCCP, posted by the Agency for Healthcare Research and Quality (AHRQ) in 2022. Responses were analyzed between January 2023 and February 2024.

The researchers identified 9 themes: (1) suboptimal quality of care; (2) person-centered, goal-concordant care; (3) multidisciplinary team–based care and care coordination; (4) prevention across the life course; (5) digital health solutions; (6) workflow; (7) education and self-management support; (8) payment; and (9) achieving community, health system, and payer goals.

The information collected from this study are used to gain momentum in the AHRQ’s initiative on Person-Centered Care Planning for People with MCC. This data was used to solicit input from multidisciplinary experts, patients and policy stakeholders at the recent AHRQ Summit to determine next steps in promoting comprehensive care for the nation’s largest patient population – those living with MCC.

LINK TO FULL ARTICLE: https://www.nursingoutlook.org/article/S0029-6554(24)00166-0/abstract?dgcid=raven_jbs_etoc_email

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A link to the slides mentioned in the podcast: https://hcanys.org/doclink/kuebler-medication-safety/eyJ0eXAiOiJKV1QiLCJhbGciOiJIUzI1NiJ9.eyJzdWIiOiJrdWVibGVyLW1lZGljYXRpb24tc2FmZXR5IiwiaWF0IjoxNzMzNDIwOTE0LCJleHAiOjE3MzM1MDczMTR9.Xg5H1OS1UAio4gUrdriWHmecDx9uMOC-ZmB2Y-Rv9I8

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