Digital epidemiologic research on multilevel risks for HIV acquisition and other health outcomes among transgender women in Eastern and Southern United States: A protocol for an online cohort (Preprint)

10.2196/preprints.29152 ◽

2021 ◽

Author(s):

Andrea L Wirtz ◽

Erin E Cooney ◽

Megan Stevenson ◽

Asa Radix ◽

Tonia Poteat ◽

...

Keyword(s):

United States ◽

Health Outcomes ◽

Cohort Studies ◽

The United States ◽

Transgender Women ◽

Southern United States ◽

Epidemiologic Research ◽

Hiv Epidemic ◽

Hiv Acquisition ◽

A Site

BACKGROUND The HIV epidemic disproportionately impacts transgender women in the United States. Cohort studies identify unique risks for affected populations, but use of facility-based methods may bias findings towards individuals living in research catchment areas, more engaged in health services, and/or, in the case of transgender populations, those who are open about their transgender identity. Digital clinical trials and other online research methods are increasingly common, providing opportunity to reach those not commonly engaged in research. Simultaneously, there is a need to understand potential biases associated with digital research, how these methods perform and whether they are accepted across populations. OBJECTIVE This study aims to assess the feasibility of developing and implementing an online cohort of transgender women to assess risks for HIV acquisition and other health experiences and to evaluate how an online cohort compares to a site-based, technology enhanced cohort for epidemiologic research. The overarching goal is to estimate incidence of HIV and other health outcomes among transgender women in eastern and southern United States. METHODS This sub-study is part of a larger multisite prospective cohort (LITE) conducted among transgender women, which also includes a site-based cohort of six eastern and southern US cities. The online cohort was launched to enroll and follow participants across 72 cities with similar demographic characteristics in the same regions as the site-based cohorts. Participants are followed for 24 months. Adult transgender women are recruited via convenience sampling (e.g., peer referrals, social media, and dating apps). Participants reporting negative or unknown HIV status are enrolled in a baseline study visit, complete a socio-behavioral survey, and provide oral fluid specimens to test for HIV. Participants not living with HIV (lab-confirmed) at baseline are offered enrollment into the cohort; follow-up assessments occur every six months. RESULTS Enrollment into the online cohort launched in January 2019. Active recruitment stopped in May 2019 and enrollment officially closed in August 2020. A total of 580 participants enrolled into and are followed in the cohort. A recruitment-enrollment cascade was observed across screening, consent, and completion of study activities. Implementation experiences with HIV test kits highlight the need for heavy staff engagement to support participant engagement, visit completion, and retention, even with automated digital procedures. CONCLUSIONS This study is responsive to increasing research interest in online cohort research, particularly for populations who are most affected by the HIV epidemic and for those who may otherwise not participate in-person. The progression across stages of the recruitment-enrollment cascade provides useful insight for implementation of cohort studies in the online environment.

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Perceived HIV acquisition risk and low uptake of pre-exposure prophylaxis (PrEP) among a cohort of transgender women with PrEP indication in the eastern and southern United States

JAIDS Journal of Acquired Immune Deficiency Syndromes ◽

10.1097/qai.0000000000002726 ◽

2021 ◽

Vol Publish Ahead of Print ◽

Author(s):

Jowanna Malone ◽

Sari L. Reisner ◽

Erin Cooney ◽

Tonia Poteat ◽

Christopher M. Cannon ◽

...

Keyword(s):

United States ◽

Transgender Women ◽

Southern United States ◽

Hiv Acquisition ◽

Exposure Prophylaxis

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American Cohort to Study HIV Acquisition Among Transgender Women in High-Risk Areas (The LITE Study): Protocol for a Multisite Prospective Cohort Study in the Eastern and Southern United States (Preprint)

10.2196/preprints.14704 ◽

2019 ◽

Author(s):

Andrea L Wirtz ◽

Tonia Poteat ◽

Asa Radix ◽

Keri N Althoff ◽

Christopher M Cannon ◽

...

Keyword(s):

United States ◽

Hiv Infection ◽

Technology Use ◽

Prospective Cohort ◽

Transgender Women ◽

Community Advisory Board ◽

Southern United States ◽

Hiv Acquisition ◽

Living With Hiv

BACKGROUND In the United States, transgender women (TW) are disproportionately burdened by HIV infection. Cohort studies are needed to evaluate factors driving HIV acquisition among TW over time. These will require implementation strategies that are acceptable to the TW community and feasible to implement. OBJECTIVE This study aims to investigate the rate and correlates of HIV acquisition and other health outcomes among TW in eastern and southern United States. METHODS LITE is a multisite prospective cohort in 6 eastern and southern US cities, which will be followed across 24 months of technology-enhanced biobehavioral follow-up. Adult TW, regardless of HIV status, are recruited via convenience sampling (eg, peer referrals, social media, and dating apps). Participants are enrolled in a baseline study visit, complete a sociobehavioral survey, and test for HIV and sexually transmitted infections. Participants who are not living with HIV at baseline are offered enrollment into the cohort (N=1100); follow-up assessments occur quarterly. RESULTS Cohort assembly was informed by synchronous Web-based focus group discussions with TW (n=41) and by continuing engagement with community advisory board members from each site. Enrollment launched in March 2018. The study is underway in the Atlanta; Baltimore; Boston; Miami; New York City; and Washington, DC, metro areas. As of March 2019, 795 TW completed a baseline visit (mean age 35 years). The majority of the participants are racial/ethnic minorities, with 45% of the TW identifying as black and 28% of the TW identifying as Hispanic/Latinx. More than one-quarter (28%) of the TW are living with HIV infection (laboratory-confirmed). Online recruitment methods support engagement with TW, although peer referral and referral through trusted health facilities and organizations remain most effective. CONCLUSIONS This study is responsive to increasing research interest in technology-enhanced methods for cohort research, particularly for hard-to-reach populations. Importantly, the diversity of literacy, technology use, and overall socioeconomic situations in this sample of TW highlights the need to leverage technology to permit a flexible, adaptive methodology that enhances engagement of potential participants living in marginalized contexts while still ensuring rigorous and sound study design.

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American Cohort to Study HIV Acquisition Among Transgender Women in High-Risk Areas (The LITE Study): Protocol for a Multisite Prospective Cohort Study in the Eastern and Southern United States

JMIR Research Protocols ◽

10.2196/14704 ◽

2019 ◽

Vol 8 (10) ◽

pp. e14704 ◽

Cited By ~ 4

Author(s):

Andrea L Wirtz ◽

Tonia Poteat ◽

Asa Radix ◽

Keri N Althoff ◽

Christopher M Cannon ◽

...

Keyword(s):

United States ◽

Hiv Infection ◽

Technology Use ◽

Prospective Cohort ◽

Transgender Women ◽

Community Advisory Board ◽

Southern United States ◽

Hiv Acquisition ◽

Living With Hiv

Background In the United States, transgender women (TW) are disproportionately burdened by HIV infection. Cohort studies are needed to evaluate factors driving HIV acquisition among TW over time. These will require implementation strategies that are acceptable to the TW community and feasible to implement. Objective This study aims to investigate the rate and correlates of HIV acquisition and other health outcomes among TW in eastern and southern United States. Methods LITE is a multisite prospective cohort in 6 eastern and southern US cities, which will be followed across 24 months of technology-enhanced biobehavioral follow-up. Adult TW, regardless of HIV status, are recruited via convenience sampling (eg, peer referrals, social media, and dating apps). Participants are enrolled in a baseline study visit, complete a sociobehavioral survey, and test for HIV and sexually transmitted infections. Participants who are not living with HIV at baseline are offered enrollment into the cohort (N=1100); follow-up assessments occur quarterly. Results Cohort assembly was informed by synchronous Web-based focus group discussions with TW (n=41) and by continuing engagement with community advisory board members from each site. Enrollment launched in March 2018. The study is underway in the Atlanta; Baltimore; Boston; Miami; New York City; and Washington, DC, metro areas. As of March 2019, 795 TW completed a baseline visit (mean age 35 years). The majority of the participants are racial/ethnic minorities, with 45% of the TW identifying as black and 28% of the TW identifying as Hispanic/Latinx. More than one-quarter (28%) of the TW are living with HIV infection (laboratory-confirmed). Online recruitment methods support engagement with TW, although peer referral and referral through trusted health facilities and organizations remain most effective. Conclusions This study is responsive to increasing research interest in technology-enhanced methods for cohort research, particularly for hard-to-reach populations. Importantly, the diversity of literacy, technology use, and overall socioeconomic situations in this sample of TW highlights the need to leverage technology to permit a flexible, adaptive methodology that enhances engagement of potential participants living in marginalized contexts while still ensuring rigorous and sound study design. International Registered Report Identifier (IRRID) DERR1-10.2196/14704

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