Frontiers in nephrology · 2026
Beyond the test: patient-reported concerns and worries regarding kidney conditions and APOL1 genetic testing among Black patients.
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Elsurer Afsar Rengin, Clair Bryan, Memon Aliza Anwar, Edwards John C, Miyata Kana N, Afsar Baris, Schnitzler Mark, Xiao Huiling, Carriker Amber, Abu Al Rub Fadee, Hsu Chi-Yuan, Muiru Anthony N, Freedman Barry I, Philipneri Marie D, Caliskan Yasar, Lentine Krista L, St. Louis APOL1 Study Collaborators
Аннотация
BACKGROUND: Apolipoprotein L1 (APOL1) renal risk variants (RRVs) contribute to the increased risk of kidney disease among Black Americans, but use of genetic testing may be limited by patient concerns regarding clinical implications and effects on family.
METHODS: Black adults were prospectively enrolled for APOL1 genotyping, surveys, and clinical record review beginning in January 2019 at a Midwestern U.S. medical center (NCT05656261). Patient-reported concerns about kidney conditions and potential worry related to having an APOL1 high-risk genotype were analyzed at baseline and 3-months.
RESULTS: Among 200 participants enrolled with completed 3-month follow-up as of January 2025, 17.5% (35/200) carried an APOL1 high-risk genotype (2 RRVs). At baseline, concern about kidney conditions was common: 39% reported being extremely concerned, 34% very concerned, 12% somewhat concerned, 10% a little concerned, and 6% not concerned at all. Higher baseline concern was observed among women and those with a family history of both kidney disease and hypertension. At 3 months, concern levels were unchanged in 45% of participants, decreased in 36%, and increased in 19%. APOL1 high-risk genotypes were more common in those with an increase, compared to a decrease, in kidney concern at follow-up (29% vs 11%; P = 0.02). Worry related to having an APOL1 high-risk genotype declined over time, from 14% at baseline to 8% at 3 months.
CONCLUSION: In this prospective cohort, patient-reported concerns about kidney conditions were common and generally stable, with higher levels observed in certain subgroups. Although APOL1 high-risk genotypes were more common among participants whose kidney concerns increased than among those whose concerns decreased, overall patient-reported worry about genetic risk declined. These findings may help inform patient education and counseling surrounding APOL1 testing.
METHODS: Black adults were prospectively enrolled for APOL1 genotyping, surveys, and clinical record review beginning in January 2019 at a Midwestern U.S. medical center (NCT05656261). Patient-reported concerns about kidney conditions and potential worry related to having an APOL1 high-risk genotype were analyzed at baseline and 3-months.
RESULTS: Among 200 participants enrolled with completed 3-month follow-up as of January 2025, 17.5% (35/200) carried an APOL1 high-risk genotype (2 RRVs). At baseline, concern about kidney conditions was common: 39% reported being extremely concerned, 34% very concerned, 12% somewhat concerned, 10% a little concerned, and 6% not concerned at all. Higher baseline concern was observed among women and those with a family history of both kidney disease and hypertension. At 3 months, concern levels were unchanged in 45% of participants, decreased in 36%, and increased in 19%. APOL1 high-risk genotypes were more common in those with an increase, compared to a decrease, in kidney concern at follow-up (29% vs 11%; P = 0.02). Worry related to having an APOL1 high-risk genotype declined over time, from 14% at baseline to 8% at 3 months.
CONCLUSION: In this prospective cohort, patient-reported concerns about kidney conditions were common and generally stable, with higher levels observed in certain subgroups. Although APOL1 high-risk genotypes were more common among participants whose kidney concerns increased than among those whose concerns decreased, overall patient-reported worry about genetic risk declined. These findings may help inform patient education and counseling surrounding APOL1 testing.