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  • 1
    Online Resource
    Online Resource
    Development of a culturally targeted chatbot to inform living kidney donor candidates of African ancestry about APOL1 genetic testing: a mixed methods study
    Springer Science and Business Media LLC ; 2024
    In:  Journal of Community Genetics
    Details
    In: Journal of Community Genetics, Springer Science and Business Media LLC
    Abstract: Clinical chatbots are increasingly used to help integrate genetic testing into clinical contexts, but no chatbot exists for A polipoprotein L1 ( APOL1 ) genetic testing of living kidney donor (LKD) candidates of African ancestry. Our study aimed to culturally adapt and assess perceptions of the Gia® chatbot to help integrate APOL1 testing into LKD evaluation. Ten focus groups and post-focus group surveys were conducted with 54 LKDs, community members, and kidney transplant recipients of African ancestry. Data were analyzed through thematic analysis and descriptive statistics. Key themes about making Gia culturally targeted included ensuring: (1) transparency by providing Black LKDs’ testimonials, explaining patient privacy and confidentiality protections, and explaining how genetic testing can help LKD evaluation; (2) content is informative by educating Black LKDs about APOL1 testing instead of aiming to convince them to undergo testing, presenting statistics, and describing how genetic discrimination is legally prevented; and (3) content avoids stigma about living donation in the Black community. Most agreed Gia was neutral and unbiased (82%), trustworthy (82%), and words, phrases, and expressions were familiar to the intended audience (85%). Our culturally adapted APOL1 Gia chatbot was well regarded. Future research should assess how this chatbot could supplement provider discussion prior to genetic testing to scale APOL1 counseling and testing for LKD candidate clinical evaluation.
    Type of Medium: Online Resource
    ISSN: 1868-6001
    URL: Article
    DOI: 10.1007/s12687-024-00698-8
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2024
    detail.hit.zdb_id: 2543127-4
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  • 2
    Online Resource
    Online Resource
    A National Survey of Transplant Surgeons and Nephrologists on Implementing Apolipoprotein L1 ( APOL1 ) Genetic Testing Into Clinical Practice
    SAGE Publications ; 2019
    In:  Progress in Transplantation Vol. 29, No. 1 ( 2019-03), p. 26-35
    Details
    In: Progress in Transplantation, SAGE Publications, Vol. 29, No. 1 ( 2019-03), p. 26-35
    Abstract: There is debate over whether Apolipoprotein L1 (APOL1) gene risk variants contribute to African American (AA) live donors’ (LD) increased risk of kidney failure. Little is known about factors influencing physicians’ integration of APOL1 genetic testing of AA LDs into donor evaluation. Design: We conducted a cross-sectional survey, informed by Roger’s Diffusion of Innovations theory, among nephrology and surgeon members of the American Society of Nephrology, American Society of Transplantation, and American Society of Transplant Surgeons about their practices of and attitudes about APOL1 genetic testing of AA potential LDs. Descriptive statistics and bivariate analyses were performed. Results: Of 383 completed surveys, most physicians believed that APOL1 testing can help AA LDs make more informed donation decisions (87%), and the addition of APOL1 testing offers better clinical information about AA LD’s eligibility for donation than existing evaluation approaches (74%). Among respondents who evaluate LDs (n = 345), 63% would definitely or probably begin or continue using APOL1 testing in the next year, however, few use APOL1 testing routinely (4%) or on a case-by-case basis (14%). Most did not know the right clinical scenario to order APOL1 testing (59%), but would use educational materials to counsel AA LDs about APOL1 testing (97%). Discussion: Although physicians were highly supportive of APOL1 genetic testing for AA LDs, few physicians use APOL1 testing. As more physicians intend to use APOL1 testing, an ethical framework and clinical decision support are needed presently to assist clinicians in clarifying the proper indication of APOL1 genetic testing.
    Type of Medium: Online Resource
    ISSN: 1526-9248 , 2164-6708
    URL: Article
    DOI: 10.1177/1526924818817048
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2019
    detail.hit.zdb_id: 2864264-8
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  • 3
    Online Resource
    Online Resource
    Implementation of a culturally competent APOL1 genetic testing programme into living donor evaluation: A two-site, non-randomised, pre–post trial design
    BMJ ; 2023
    In:  BMJ Open Vol. 13, No. 5 ( 2023-05), p. e067657-
    Details
    In: BMJ Open, BMJ, Vol. 13, No. 5 ( 2023-05), p. e067657-
    Abstract: While living donor (LD) kidney transplantation is the optimal treatment for patients with kidney failure, LDs assume a higher risk of future kidney failure themselves. LDs of African ancestry have an even greater risk of kidney failure post-donation than White LDs. Because evidence suggests that Apolipoprotein L1 ( APOL1 ) risk variants contribute to this greater risk, transplant nephrologists are increasingly using APOL1 genetic testing to evaluate LD candidates of African ancestry. However, nephrologists do not consistently perform genetic counselling with LD candidates about APOL1 due to a lack of knowledge and skill in counselling. Without proper counselling, APOL1 testing will magnify LD candidates’ decisional conflict about donating, jeopardising their informed consent. Given cultural concerns about genetic testing among people of African ancestry, protecting LD candidates’ safety is essential to improve informed decisions about donating. Clinical ‘chatbots’, mobile apps that provide genetic information to patients, can improve informed treatment decisions. No chatbot on APOL1 is available and no nephrologist training programmes are available to provide culturally competent counselling to LDs about APOL1 . Given the shortage of genetic counsellors, increasing nephrologists’ genetic literacy is critical to integrating genetic testing into practice. Methods and analysis Using a non-randomised, pre–post trial design in two transplant centres (Chicago, IL, and Washington, DC), we will evaluate the effectiveness of culturally competent APOL1 testing, chatbot and counselling on LD candidates’ decisional conflict about donating, preparedness for decision-making, willingness to donate and satisfaction with informed consent and longitudinally evaluate the implementation of this intervention into clinical practice using the R each, E ffectiveness, A doption, I mplementation and M aintenance framework. Ethics and dissemination This study will create a model for APOL1 testing of LDs of African ancestry, which can be implemented nationally via implementation science approaches. APOL1 will serve as a model for integrating culturally competent genetic testing into transplant and other practices to improve informed consent. This study involves human participants and was approved by Northwestern University IRB (STU00214038). Participants gave informed consent to participate in the study before taking part. Trial registration ClinicalTrials.gov Identifier: NCT04910867 . Registered 8 May 2021, https://register.clinicaltrials.gov/prs/app/action/SelectProtocol?sid=S000AWZ6 & selectaction=Edit & uid=U0001PPF & ts=7 & cx=-8jv7m2 ClinicalTrials.gov Identifier: NCT04999436 . Registered 5 November 2021, https://register.clinicaltrials.gov/prs/app/action/SelectProtocol?sid=S000AYWW & selectaction=Edit & uid=U0001PPF & ts=11 & cx=9tny7v
    Type of Medium: Online Resource
    ISSN: 2044-6055 , 2044-6055
    URL: Article
    URL: Article
    URL: Article
    URL: Article
    DOI: 10.1136/bmjopen-2022-067657
    DOI: 10.1136/bmjopen-2022-067657.supp1
    DOI: 10.1136/bmjopen-2022-067657.supp2
    DOI: 10.1136/bmjopen-2022-067657.supp3
    Language: English
    Publisher: BMJ
    Publication Date: 2023
    detail.hit.zdb_id: 2599832-8
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  • 4
    Online Resource
    Online Resource
    African American Living Donors’ Attitudes About APOL1 Genetic Testing: A Mixed Methods Study
    Elsevier BV ; 2018
    In:  American Journal of Kidney Diseases Vol. 72, No. 6 ( 2018-12), p. 819-833
    Details
    In: American Journal of Kidney Diseases, Elsevier BV, Vol. 72, No. 6 ( 2018-12), p. 819-833
    Type of Medium: Online Resource
    ISSN: 0272-6386
    URL: Article
    DOI: 10.1053/j.ajkd.2018.07.017
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2018
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  • 5
    Online Resource
    Online Resource
    A Focus Group Study on African American Living Donors’ Treatment Preferences, Sociocultural Factors, and Health Beliefs About Apolipoprotein L1 Genetic Testing
    SAGE Publications ; 2019
    In:  Progress in Transplantation Vol. 29, No. 3 ( 2019-09), p. 239-247
    Details
    In: Progress in Transplantation, SAGE Publications, Vol. 29, No. 3 ( 2019-09), p. 239-247
    Abstract: Because apolipoprotein L1 ( APOL1) risk variants may contribute to live donors’ kidney failure postdonation, professional guidelines suggest informing potential donors with African ancestry about the availability of APOL1 genotyping. This study assessed African American (AA) donors’ perceptions of APOL1 genetic testing and how APOL1 may affect ethnic identity. Methods/Approach: Four focus groups were conducted with AA donors about their decision-making for and perceptions of APOL1 genetic testing and donation to inform a new culturally targeted educational brochure on APOL1 genetic testing. Qualitative data were analyzed by thematic analysis. Findings: Seventeen donors participated (47% participation rate). Four major themes emerged. (1) In hypothetical scenarios, most participants would have undergone APOL1 testing during donor evaluation to make a more informed decision, but many would have still donated. (2) Participants desired information about how having 2 APOL1 risk variants affects the donor’s and the recipient’s health. (3) Participants referred to diversity of genetic ancestry and cultural constructions of racial/ethnic identity to question the population at risk for APOL1 risk variants and recommended that all potential donors undergo genetic testing and receive education about APOL1. (4) Participants worried that out-of-pocket costs would deter APOL1 testing and that APOL1 could become a preexisting condition and discriminate against AAs. Discussion: Our findings suggest that AA donors desire APOL1 testing to foster informed consent. Transplant clinicians should be aware of these responses to APOL1 testing and be sensitive to historical issues of distrust and discrimination.
    Type of Medium: Online Resource
    ISSN: 1526-9248 , 2164-6708
    URL: Article
    DOI: 10.1177/1526924819854485
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2019
    detail.hit.zdb_id: 2864264-8
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