Dataset Information

The African American Eye Disease Study: Design and Methods.

ABSTRACT: PURPOSE:To describe the study design, operational and recruitment strategies, procedures, and baseline characteristics of the African American Eye Disease Study (AFEDS), a population-based assement of the prevalence of visual impairment, ocular disease, visual function, and health-related quality of life in African Americans. METHODS:This population-based, cross-sectional study included over 6000 African Americans 40 years and older residing in and around Inglewood, California. A detailed interview and eye examination was performed on each eligible participant. The interview included an assessment of demographic, behavioral, and ocular risk factors and health-related and vision-related quality of life. The eye examination included measurements of visual acuity, intraocular pressure, visual fields; fundus and optic disc photography; a detailed anterior and posterior segment examination; and measurements of blood pressure, glycosylated hemoglobin levels, and blood glucose levels. RESULTS:The AFEDS cohort includes more than 6000 participants that have completed a home questionnaire and a comprehensive eye examination. The majority of participants were female (63%), the average (± standard deviation) overall age was 60.9 (±11.3). Participants are mostly working (40%) or retired (41%), non-smoking (57%), partial drinking (54%), and with at least some college education (38%). A trust-development recruitment strategy was refined in order to overcome challenges in study participation. CONCLUSION:The AFEDS is the largest epidemiologic eye study among African Americans to date. The AFEDS cohort will provide information about the prevalence and risk factors of ocular disease in the largest ophthalmologic study population of African Americans in the United States.

SUBMITTER: McKean-Cowdin R

PROVIDER: S-EPMC6625507 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature

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The African American Eye Disease Study: Design and Methods.

McKean-Cowdin Roberta R Fairbrother-Crisp Alicia A Torres Mina M Lastra Carlos C Choudhury Farzana F Jiang Xuejuan X Burkemper Bruce B Varma Rohit R

Ophthalmic epidemiology 20180326 4

<h4>Purpose</h4>To describe the study design, operational and recruitment strategies, procedures, and baseline characteristics of the African American Eye Disease Study (AFEDS), a population-based assement of the prevalence of visual impairment, ocular disease, visual function, and health-related quality of life in African Americans.<h4>Methods</h4>This population-based, cross-sectional study included over 6000 African Americans 40 years and older residing in and around Inglewood, California. A ...[more]

PMID: 29580111

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Project description:Rationale & objectiveAfrican American live kidney donors ("donors") have a greater risk for kidney failure than European American donors. Apolipoprotein L1 gene (APOL1) variants in African Americans may be associated with this disparity.Study designCross-sectional mixed-methods design.Setting & participantsAfrican American donors at 1 transplantation center.Analytical approachSemistructured interviews assessed attitudes about APOL1 genetic testing, willingness to undergo APOL1 testing, hypothetical decisions about donating with 2 APOL1 variants, and demographics. Surveys assessed perceptions of ethnic identity and genetics knowledge. Interview transcriptions were analyzed using thematic analysis. Survey data were analyzed using descriptive statistics.Results23 donors participated in semistructured interviews. Most (96%) reported that transplantation centers should routinely offer APOL1 genetic testing to all African American potential donors. Most (87%) would have been willing to undergo APOL1 testing before donating. Although study participants noted that APOL1 testing may deter African American potential donors from donating, most (61%) would have donated even if they had 2 high-risk APOL1 variants. Several themes emerged. Study participants believed that APOL1 testing was beneficial for providing information to help donors make informed donation decisions. Participants expressed concern about APOL1 variants placing donors at harm for kidney failure, and therefore valued taking preventive health measures. Participants believed that potential donors would experience psychological distress from learning that they have 2 gene variants and could harm their recipients. Participants were apprehensive about insurance coverage and costs of APOL1 testing and feared that APOL1 genetic test results could discriminate against African Americans.LimitationsFindings may not be generalizable to African American potential donors.ConclusionsFindings suggest that African American donors support APOL1 genetic testing yet fear that APOL1 variants and genetic testing could adversely affect donors' health and ethnic identity. Transplantation centers using APOL1 genetic testing should address African American donors' concerns about APOL1 genetic testing to optimize future donors' informed consent practices.

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The African American Eye Disease Study: Design and Methods.

Publications

The African American Eye Disease Study: Design and Methods.

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