Faculty Bibliography

Gay, bisexual and other men who have sex with men (MSM) and transgender individuals face the highest burden of human immunodeficiency virus (HIV) infection. HIV pre-exposure prophylaxis (PrEP) is an effective evidence-based biomedical intervention to reduce acquisition of HIV infection but uptake has been suboptimal in lesbian, gay, bisexual, and transgender (LGBT) populations. Primary care providers play an integral role in addressing HIV disparities by educating patients and facilitating access to PrEP. After PrEP initiation, primary care providers should assess for and manage adverse effects, provide appropriate laboratory monitoring, support adherence, and assist patients with access to low-cost or free PrEP options if needed.

Primary care providers often express a desire to be more involved with their patients as they transition to hospice care. Given that these providers have a central role in the care of their patients, they have the potential to significantly improve the experiences of lesbian, gay, bisexual, transgender, and queer patients who face serious illnesses. This article discusses the barriers to quality hospice and palliative care experienced by many sexual and gender minorities, as well as specific ways in which primary care physicians can promote equitable end-of-life care.

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, 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. Further, this study aims 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 substudy is part of a larger multisite prospective cohort (LITE) conducted among transgender women, which also includes a site-based, technology-enhanced cohort in 6 eastern and southern US cities. The online cohort was launched to enroll and follow participants across 72 cities in the same region and with similar demographic characteristics as the site-based cohort. Participants are followed for 24 months. Adult transgender women are recruited via convenience sampling (eg, peer referrals, social media, and dating apps). Participants reporting negative or unknown HIV status are enrolled in a baseline study visit, complete a sociobehavioral 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 6 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 digital observational and intervention 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. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID)/UNASSIGNED:DERR1-10.2196/29152.

Background/UNASSIGNED:A rare, but consequential, risk of gender affirming surgery (GAS) is post-operative regret resulting in a request for surgical reversal. Studies on regret and surgical reversal are scarce, and there is no standard terminology regarding either etiology and/or classification of the various forms of regret. This study includes a survey of surgeons' experience with patient regret and requests for reversal surgery, a literature review on the topic of regret, and expert, consensus opinion designed to establish a classification system for the etiology and types of regret experienced by some patients. Methods/UNASSIGNED:This anonymous survey was sent to the 154 surgeons who registered for the 2016 World Professional Association for Transgender Health (WPATH) conference and the 2017 USPATH conference. Responses were analyzed using descriptive statistics. A MeSH search of the gender-affirming outcomes literature was performed on PubMed for relevant studies pertaining to regret. Original research and review studies that were thought to discuss regret were included for full text review. Results/UNASSIGNED:The literature is inconsistent regarding etiology and classification of regret following GAS. Of the 154 surgeons queried, 30% responded to our survey. Cumulatively, these respondents treated between 18,125 and 27,325 individuals. Fifty-seven percent of surgeons encountered at least one patient who expressed regret, with a total of 62 patients expressing regret (0.2-0.3%). Etiologies of regret were varied and classified as either: (I) true gender-related regret (42%), (II) social regret (37%), and (III) medical regret (8%). The surgeons' experience with patient regret and request for reversal was consistent with the existing literature. Conclusions/UNASSIGNED:In this study, regret following GAS was rare and was consistent with the existing literature. Regret can be classified as true gender-related regret, social regret and medical regret resulting from complications, function, pre-intervention decision making. Guidelines in transgender health should offer preventive strategies as well as treatment recommendations, should a patient experience regret. Future studies and scientific discourse are encouraged on this important topic.

BACKGROUND:Transgender and gender diverse (TGD) adults in the United States experience health disparities, especially in HIV infection. Medical gender affirmation (eg, hormone therapy and gender-affirming surgeries) is known to be medically necessary and to improve some health conditions. To our knowledge, however, no studies have assessed the effects of gender-affirming medical care on HIV-related outcomes. OBJECTIVE:This study aims to evaluate the effects of medical gender affirmation on HIV-related outcomes among TGD primary care patients. Secondary objectives include characterizing mental health, quality of life, and unmet medical gender affirmation needs. METHODS:LEGACY is a longitudinal, multisite, clinic-based cohort of adult TGD primary care patients from two federally qualified community health centers in the United States: Fenway Health in Boston, and Callen-Lorde Community Health Center in New York. Eligible adult TGD patients contribute electronic health record data to the LEGACY research data warehouse (RDW). Patients are also offered the option to participate in patient-reported surveys for 1 year of follow-up (baseline, 6-month, and 12-month assessments) with optional HIV and sexually transmitted infection (STI) testing. Biobehavioral data from the RDW, surveys, and biospecimen collection are linked. HIV-related clinical outcomes include pre-exposure prophylaxis uptake (patients without HIV), viral suppression (patients with HIV), and anogenital STI diagnoses (all patients). Medical gender affirmation includes hormones, surgeries, and nonhormonal and nonsurgical interventions (eg, voice therapy). RESULTS:The contract began in April 2018. The cohort design was informed by focus groups with TGD patients (n=28) conducted between August-October 2018 and in collaboration with a community advisory board, scientific advisory board, and site-specific research support coalitions. Prospective cohort enrollment began in February 2019, with enrollment expected to continue through August 2020. As of April 2020, 7821 patients are enrolled in the LEGACY RDW and 1756 have completed a baseline survey. Participants have a median age of 29 years (IQR 11; range 18-82). More than one-third (39.7%) are racial or ethnic minorities (1070/7821, 13.68% Black; 475/7821, 6.07% multiracial; 439/7821, 5.61% Asian or Pacific Islander; 1120/7821, 14.32% other or missing) and 14.73% (1152/7821) are Hispanic or Latinx. By gender identity, participants identify as 33.79% (2643/7821) male, 37.07% (2900/7821) female, 21.74% (1700/7821) nonbinary, and 7.39% (578/7821) are unsure or have missing data. Approximately half (52.0%) of the cohort was assigned female sex at birth, and 5.4% (421/7821) are living with HIV infection. CONCLUSIONS:LEGACY is an unprecedented opportunity to evaluate the impact of medical gender affirmation on HIV-related health. The study uses a comprehensive research methodology linking TGD patient biobehavioral longitudinal data from multiple sources. Patient-centeredness and scientific rigor are assured through the ongoing engagement of TGD communities, clinicians, scientists, and site clinical staff undergirded by epidemiological methodology. Findings will inform evidence-based clinical care for TGD patients, including optimal interventions to improve HIV-related outcomes. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID)/UNASSIGNED:DERR1-10.2196/24198.