Abstract: TH-PO0601
Patient-Reported Concerns and Worrying About Kidney Conditions and APOL1 High-Risk Genotypes: A Midwestern US Cohort Study of Black Americans
Session Information
- Monogenic Kidney Diseases: Glomerular
November 06, 2025 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Genetic Diseases of the Kidneys
- 1201 Genetic Diseases of the Kidneys: Monogenic Kidney Diseases
Authors
- Elsurer Afsar, Rengin, Saint Louis University, St. Louis, Missouri, United States
- Clair, Bryan, Saint Louis University, St. Louis, Missouri, United States
- Memon, Aliza Anwar, Saint Louis University, St. Louis, Missouri, United States
- Afsar, Baris, Saint Louis University, St. Louis, Missouri, United States
- Edwards, John C., Saint Louis University, St. Louis, Missouri, United States
- Miyata, Kana, Saint Louis University, St. Louis, Missouri, United States
- Abu Al Rub, Fadee, Saint Louis University, St. Louis, Missouri, United States
- Xiao, Huiling, Saint Louis University, St. Louis, Missouri, United States
- Carriker, Amber, Mid-America Transplant Services, St. Louis, Missouri, United States
- Hsu, Chi-yuan, University of California San Francisco, San Francisco, California, United States
- Muiru, Anthony N., University of California San Francisco, San Francisco, California, United States
- Vo, Thanh-Mai Nguyen, Saint Louis University, St. Louis, Missouri, United States
- Freedman, Barry I., Wake Forest University, Winston-Salem, North Carolina, United States
- Philipneri, Marie D., Saint Louis University, St. Louis, Missouri, United States
- Schnitzler, Mark, Saint Louis University, St. Louis, Missouri, United States
- Caliskan, Yasar, Saint Louis University, St. Louis, Missouri, United States
- Lentine, Krista L., Saint Louis University, St. Louis, Missouri, United States
Background
Understanding concerns about kidney conditions and Apolipoprotein 1 (APOL1) renal risk variants (RRVs) among Black patients may inform tailored education and support initiatives.
Methods
We prospectively investigated changes in ‘concern’ about kidney conditions and ‘worrying’ about APOL1 RRV in a unique cohort of Black individuals enrolled at a Midwestern U.S. hospital (NCT05656261). Participants reported herein were enrolled 01/2019–03/2025 and completed APOL1 genotyping along with surveys at baseline and 3 months.
Results
Overall in this sample (54% women; mean age: 57.5 yrs), 18% had high-risk (2RRVs) and 83% low-risk APOL1 genotypes (0 or 1 RRV). Average level of kidney concern declined from "very concerned" on a 5-point Likert scale to "somewhat concerned" overall. From baseline to 3 months, concern about having a kidney condition increased in 19%, did not change in 45%, and decreased in 36%. The minority with increased kidney concerns more commonly had 2 APOL1 RRV vs. those with decreased concerns (19% vs. 11% with 2 RRV in those with increased vs. decreased worrying, respectively; Fig.; p=0.02). At baseline, 14% reported that learning of a high-risk APOL1 genotype would cause worry, while this proportion declined to 8% at 3 months.
Conclusion
Concern about kidney conditions is common among Black patients and is associated with high-risk APOL1 genotypes. A minority report APOL1 -specific worry, and this worry decreased at follow-up, which may reflect the mitigating effects of study-provided education and counseling. Future research should develop tailored education and support to guide at-risk patients and clinicians in optimizing the care of Black patients facing increased kidney risk.
Funding
- Private Foundation Support