DOI: 10.5061/dryad.pc866t1mk
title: Factors associated with attitudes toward HIV cure research among transgender women and travestis: a cross-sectional survey in São Paulo, Brazil

description: Objective: Characterizing the perceptions of groups most affected by HIV
 is fundamental in establishing guidelines for biomedical advancement.
 Although Brazil has successfully fought HIV/AIDS through several measures,
 transgender women still have a likelihood of HIV infection 55 times higher
 than the general population. This study aimed to better understand the
 perception and awareness of HIV cure research among the trans-identifying
 population in São Paulo, Brazil, and to determine factors that motivate or
 discourage participation in HIV cure studies. Setting: This
 cross-sectional study analyzed data collected from a questionnaire
 administered to 118 transgender women and travestis at five sites within
 the city of São Paulo. It utilizes quantitative methodology to describe
 the perspectives of transgender and travesti people in relation to HIV
 cure research and the context in which such perspectives are produced.
 Results: Of 118 participants, most participants (73%) had some knowledge
 of HIV cure research and were most willing to participate in online
 surveys (52%), interviews (52%), focus groups (52%), and studies involving
 blood draws (57%). Those with a higher education or employment status were
 more likely to agree that someone had been cured of HIV, people living
 with HIV are discriminated against, and more information about HIV cure
 research is needed before the community embraces it. Only 55% of
 participants completely trusted their physician. The biggest motivational
 factors included gaining additional knowledge about HIV infection (77%)
 and the potential for a longer, healthier life for all (73%). Conclusions:
 As a primary analysis of HIV cure attitudes among the transgender and
 travesti population as well as the social context in which they are
 formed, this study identifies opportunities to strengthen the dialogue and
 develop more educational collaborations between scientific investigators,
 community educators, and the trans-identifying population to ensure that
 HIV cure research is inclusive of diverse perspectives.
description: This study analyzes data collected from a questionnaire
 administered at five sites within the city of São Paulo, Brazil. It is a
 cross-regional study that utilizes quantitative methodology to describe
 the perspectives of transgender and travesti people in relation to HIV
 cure research and the context in which such perspectives are produced. A
 convenience sample of 118 individuals was obtained from July 5, 2019 to
 August 15, 2019. To obtain the desired sample size, convenience sampling
 was utilized by approaching transgender or travesti-identifying
 individuals seeking health services, social services, or communal living
 spaces at the designated study sites. Inclusion criteria for the study
 consisted of being 18 years of age or more, being a resident of the state
 of São Paulo, self-identification as a transgender woman or travesti, and
 attendance at a study site. To limit potential sampling bias and obtain a
 more regionally representative sample, the study was conducted in five
 sites where transgender women and travestis assembled for social and
 supportive activities. After consenting, the questionnaires were completed
 and collected, with the responses recorded on a secure online database
 (REDCap). The self-administered paper questionnaire
 measured demographic factors, HIV awareness, attitudes to HIV cure
 research, past participation in HIV research studies, and willingness to
 participate in HIV cure studies. This study had four main outcomes: (1)
 willingness to participate in various forms of HIV cure research, (2)
 factors which could motivate participation in HIV cure research, (3)
 factors which could discourage participation in HIV cure research, and (4)
 general attitudes toward HIV and HIV cure research. A modified Likert
 Scale was utilized to determine participants’ level of agreement with
 specific statements or aspects of research studies. As
 the questionnaire indicates,(supplementary file) demographic variables
 included self-reported age, skin color/race, site location, sexual
 orientation, gender identity, level of education, employment status,
 health status, and HIV status. Knowledge and
 perceptions about HIV cure were measured by asking participants if they
 had heard of HIV/AIDS cure research and what an HIV cure mean to them,
 with the possible options being: “No more HIV treatment needed
 temporarily”; “No more HIV treatment needed ever”; “No risk of
 transmitting HIV to others”; “Negative HIV test”; “HIV completely
 eliminated from the body”; “There is no risk of HIV/AIDS-related
 complications or other effects of HIV”; or “Other”. To determine whether
 general knowledge of news surrounding HIV cure had been assimilated by the
 associated population, we asked participants if they thought someone had
 been cured of HIV as well as how many years it would take to make an HIV
 cure that is available to the public. To evaluate
 previous involvement in general health studies, participants were asked to
 report any participation in research involving online questionnaires, HIV
 prevention surveys, interviews, focus group discussions, and long-term
 studies. They were also asked about involvement in studies that included
 blood draws, HIV prevention medications, behavioral treatments, new
 treatments or approaches, and drug safety. To assess
 participant preferences regarding their potential involvement in HIV cure
 research, they were asked if they would be willing to participate in
 studies involving online questionnaires, in-person or phone interviews,
 focus group discussions, blood draws, tissue biopsies, leukapheresis or
 apheresis, latency reversing agents, gene editing, autologous or allogenic
 transplants, therapeutic vaccines, treatment interruption, broadly
 neutralizing antibodies, unique proteins or T cells, new treatments
 untested on people, early safety studies, and efficacy studies.
 The subsequent portion of the questionnaire evaluated factors
 that would motivate participants to engage in HIV cure research.
 Participants were asked to indicate the level of importance for each of
 the following factors: gaining additional knowledge about HIV, having
 access to medical doctors, researchers, or nurses, contributing to HIV
 cure research, hope for health improvement, payment for participation,
 care for the community, information about new treatment options, free
 laboratory work, free meals at the study site, money for transportation,
 care for future generations, contributions to scientific knowledge, the
 potential for a longer and healthier life for themself, and the potential
 for a longer and healthier life for others. To
 understand potential study risks that would discourage participation in
 HIV cure research, participants were asked whether various factors would
 dissuade them from engaging in research studies. These included toxicities
 or adverse side effects, the potential of drug resistance development, the
 potential of an increased viral load to do ART interruption, the
 activation of cancer-causing genes, graft-versus-host disease, invasive
 study procedures, long study visits, long-term follow-up, neurologic side
 effects, gastrointestinal side effects, psychological side effects,
 HIV-related side effects, dermatologic side effects, musculoskeletal side
 effects, allergic reactions, reproductive side effects, potential HIV
 transmission, unknown side effects, pain or discomfort, overnight hospital
 stays, and taking time away from family or work.
 Finally, general attitudes toward HIV cure research were assessed
 by asking participants their level of agreement with various statements
 regarding the impact of cost on a potential HIV cure, the potential
 dangers of a new cure, whether a cure is actually needed, the use of STI
 prevention methods if an HIV cure were available, the need for more HIV
 cure research education, and whether they believed there would ever be a
 cure for HIV. Participants were also asked about discrimination against
 people living with HIV and their level of trust for their health care
 provider. All technical terms used in the questionnaire
 were accompanied by brief definitions and/or examples in layman’s terms to
 improve participant comprehension. For data entry and
 database construction, REDCap (version 6.5.0) was used. A univariate
 analysis was performed to determine the association between demographic
 variables, perceptions, and willingness to undergo different types of cure
 research studies using chi squared tests or Fisher exact tests for
 categorical variables as well as Wilcoxon Rank-Sum tests for numeric
 variables. A univariate analysis was also performed on the association
 between demographic variables and “Missing/Do Not Understand” responses in
 order to explore the characteristics of participants who failed to provide
 valid answers. For all comparisons, 2-tailed p-values&lt;0.05 were
 considered statistically significant. All analyses were performed in Stata
 Version 15.1 (StataCorp; StataCorp LP, College Station, TX).
description: We direct all readers and data users to first utilize the README
 file (Wozniak-2020-Sao-Paulo-Transgender-Survey-README-File.txt), which
 provides an overview of the study and the information within each file
 submitted to Dryad.<br>  <br>
 Wozniak-2020-Sao-Paolo-Transgender-Survey-Tables-I-XIII-Excel.xlsx
 provides all data tables in Excel format for ease of the reader or data
 user.<br> Data from each specific table can be found in .csv format
 for documents beginning with "Wozniak-Table" for Tables
 I-XIII.<br>
 Wozniak-2020-Sao-Paulo-Transgender-Survey-English-Version.txt provides the
 English version of the survey distributed in the study.