Implementation of a culturally competent<i>APOL1</i>genetic testing programme into living donor evaluation: A two-site, non-randomised, pre–post trial design

Smith, Justin D; Agrawal, Akansha; Wicklund, Catherine; Duquette, Debra; Friedewald, John; Rasmussen, Luke V; Gacki-Smith, Jessica; Tandon, S. Darius; Muhammad, Lutfiyya N; Yancy, Clyde W; Dong, Siyuan; Cooper, Matthew; Gilbert, Alexander; Shetty, Aneesha; Gordon, Elisa J

doi:10.1136/bmjopen-2022-067657

Cited by 4 publications

(6 citation statements)

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“…Future research will examine use of the APOL1 Gia chatbot in real-world settings using self-reported perceptions and log data. Our research team is implementing Gia into donor clinics to evaluate its impact on LKD candidates’ decision-making about APOL1 genetic testing and donation (Smith et al 2023 ). Critics’ fears that chatbots will dehumanize healthcare delivery and replace genetic counselors (Reddy et al 2019 ) are unfounded because chatbots aid, rather than replace, human decision-making (Nazareth et al 2021 ).…”

Section: Discussionmentioning

confidence: 99%

“…Our study was conducted as part of a larger study evaluating the integration of a culturally competent APOL1 genetic testing program into LKD candidate evaluation at Northwestern University (NU) in Chicago, IL and Georgetown University (GU) in Washington, DC (Smith et al 2023 ). The study was approved by the Institutional Review Boards at NU (STU00214038) and GU (STUDY00003752); NU served as the Institutional Review Board of record for GU.…”

Section: Methodsmentioning

confidence: 99%

“…Focus groups were conducted remotely and led by female moderators [PW and RY] trained in focus group facilitation by a seasoned qualitative researcher [EJG]. Moderators used standard procedures to direct the discussion (Krueger 1994), published elsewhere (Smith et al 2023). Focus groups began by providing background information about living kidney donation, relationship between APOL1 and kidney disease among individuals of African ancestry, and the purpose of Gia to ensure that participants had sufficient knowledge to respond to questions.…”

Section: Focus Groupsmentioning

confidence: 99%

“…Given the available evidence, the importance the transplant community places on protecting living donor’s safety (Tan et al 2015 ), and the 2017 KDIGO Clinical Practice Guideline on the Evaluation and Care of Living Kidney Donors which recommends “…considering APOL1 genotyping in LD candidates with sub-Saharan African ancestors” have justified the implementation of some degree of APOL1 testing into clinical practice for many surveyed transplant centers (Gordon et al 2018 ; Doshi et al 2021 ). Accordingly, it is essential that centers performing APOL1 genetic testing do so in an ethically and culturally targeted manner to avoid reinforcing systemic racism (Smith et al 2023 ).…”

Section: Introductionmentioning

confidence: 99%

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Development of a culturally targeted chatbot to inform living kidney donor candidates of African ancestry about APOL1 genetic testing: a mixed methods study

Gordon,

Gacki-Smith,

Gooden

et al. 2024

J Community Genet

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Clinical chatbots are increasingly used to help integrate genetic testing into clinical contexts, but no chatbot exists for Apolipoprotein 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.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Focus Groupsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Development of a culturally targeted chatbot to inform living kidney donor candidates of African ancestry about APOL1 genetic testing: a mixed methods study

Gordon,

Gacki-Smith,

Gooden

et al. 2024

J Community Genet

Self Cite

View full text Add to dashboard Cite

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“…54 Studies evaluating culturally competent integration of APOL1 testing of potential living donors are currently underway (NCT04910867 and NCT04999436) in the United States. 55 Preferences for clinical decision support integration into the electronic health record were recently assessed in a focus group of transplant nephrologists, the majority of whom expressed significant interest and emphasized the added value of counseling potential donors. 56 The landscape of donor and recipient risk continues to evolve with the emergence of clinical trials evaluating the APOL1 channel inhibitor, inaxaplin, with the Phase 2a trial showing a mean −47.6% (95% CI, −60 to −31.3) reduction in proteinuria in the treatment group after 13 weeks of daily therapy.…”

Section: Donor Apol1mentioning

confidence: 99%

Strategies for choosing the best living donor: A review of the literature and a proposal of a decision‐making paradigm

Charnaya,

Van Arendonk,

Segev

2024

Pediatric Transplantation

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Transplantation remains the gold‐standard treatment for pediatric end‐stage kidney disease. While living donor transplant is the preferred option for most pediatric patients, it is not the right choice for all. For those who have the option to choose between deceased donor and living donor transplantation, or from among multiple potential living donors, the transplant clinician must weigh multiple dynamic factors to identify the most optimal donor. This review will cover the key considerations when choosing between potential living donors and will propose a decision‐making algorithm.

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Heart Failure in African American Individuals, Version 2.0

Yancy

2024

JAMA

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An antecedent body of work established nearly 20 years ago benchmarked the nuanced distinctions of heart failure affecting African American people. Summative statements established a nearly 2-fold higher incidence, earlier onset, greater severity at the time of diagnosis, a more likely nonischemic etiology, a putative pathophysiology attributed to hypertensive heart disease, greater morbidity, and in younger ages (45-64 years) higher mortality. 1,2 The coincident burden of adverse social determinants of health further delineates the disproportionate burden of heart failure in African American individuals. Given that race is a social construct, this peculiar predilection for a nonischemic heart failure phenotype requires further investigation.Though race fails as a surrogate for genetics, 3 race may infer, albeit weakly, genomic ancestry. For those higher-frequency disease-modifying genetic variants associated with African ancestry, it becomes reasonable to revisit genomics in search of additional insight on nonischemic etiologies of heart failure. Transthyretin (TTR) cardiac amyloidosis is known to occur in in the presence of ATTRv-CA (variant) or ATTRwt-CA (wild-type). The most common TTR variant defining the genetic basis of cardiac amyloidosis, Val122Ile, now identified as V142I, originated in western Africa. This causative genetic variant occurs in 3% to 4% of persons in the US who self-identify as African American or Black. 4 Historically, cardiac amyloidosis was considered rare, with a purported incidence of less than 5/10 000 in the general population, qualifying it as an orphan disease. 5 More recent evidence that benefits from noninvasive strategies to facilitate the diagnosis challenges the rarity of cardiac amyloidosis. Based on positive technetium 99m pyrophosphate scans in patients with high pretest likelihood due to the presence of candidate clinical findings in the general population, the prevalence of cardiac amyloidosis may be as high as 10% to 15% in those younger than 70 years and up to 30% in older adults with heart failure. 6,7 Clearly, cardiac amyloidosis is no longer an orphan disease; missed diagnostic opportunities are likely nontrivial, particularly in African American patients with heart failure.In this issue of JAMA, the analysis by Selvaraj et al 8 now allows more precise calibration of this important potential cause of heart failure in African American or Black individuals. Using an impressive aggregation of 4 cohort studies characterized with racial and genomic data, and enriching a sample of participants who self-identify as African American or Black with a size sufficient for natural history studies, the authors present the strong likelihood of carrier status for V142I, heterozygous or homozygous, as a substantial risk factor associated with heart failure, heart failure hospitalizations, and years of life lost. The

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Implementation of a culturally competentAPOL1genetic testing programme into living donor evaluation: A two-site, non-randomised, pre–post trial design

Cited by 4 publications

References 118 publications

Development of a culturally targeted chatbot to inform living kidney donor candidates of African ancestry about APOL1 genetic testing: a mixed methods study

Development of a culturally targeted chatbot to inform living kidney donor candidates of African ancestry about APOL1 genetic testing: a mixed methods study

Strategies for choosing the best living donor: A review of the literature and a proposal of a decision‐making paradigm

Heart Failure in African American Individuals, Version 2.0

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