Overview and Methodology of the National HIV Behavioral Surveillance Among Transgender Women — Seven Urban Areas, United States, 2019–2020

Methods

Overview

NHBS-Trans is an HIV-related biobehavioral surveillance system to monitor behavioral risk factors, prevention use, and HIV prevalence among transgender women. During 2019–2020, CDC conducted NHBS-Trans using respondent-driven sampling, a methodology similar to snowball sampling that is often used to sample hard-to-reach populations (4). This method relies on multiple waves of peer-to-peer recruitment to achieve the desired sample size. Applicable local institutional review boards in each participating project area approved NHBS-Trans activities. NHBS-Trans activities were described in the model surveillance protocol (https://www.cdc.gov/hiv/pdf/statistics/systems/nhbs/NHBS-Trans_Protocol.pdf). The final NHBS-Trans sample included 1,608 transgender women in seven urban areas in the United States (Atlanta, Georgia; Los Angeles, California; New Orleans, Louisiana; New York, New York; Philadelphia, Pennsylvania; San Francisco, California; and Seattle, Washington) recruited using respondent-driven sampling. This activity was reviewed by CDC, deemed not research, and was conducted consistent with applicable Federal law and CDC policy.^*

Formative Assessment

NHBS-Trans implementation started with 18 months (January 2018–June 2019) of formative assessment (https://www.cdc.gov/hiv/pdf/statistics/systems/nhbs/NHBS-Trans_Formative_Assessment_Manual.pdf). Formative assessment methods included a review of existing data, reports, and publications; qualitative interviews with key partner organizations, including service providers and community key informants; and focus groups (5). Project areas often used formative assessments to answer key implementation questions (e.g., the appropriate incentive for participation and safe, conveniently located field site locations for data collection). Project areas also used the formative assessment period to build community support for NHBS-Trans. Project areas assembled local community advisory boards (CABs), and project area staff members included transgender and gender nonconforming persons.

Eligibility Criteria

NHBS-Trans included the following general eligibility criteria: aged ≥18 years, residence in a participating urban area, no previous participation in NHBS-Trans during the current data collection, ability to complete the interview in English or Spanish, and ability to provide informed consent. Additional eligibility criteria included reporting specific combinations of responses to sex listed at birth and gender identity questions (i.e., listed male at birth and gender identity including woman, transgender woman, or a gender not listed here or listed intersex at birth and a gender identity of transgender woman) (Box).

Questionnaire

The NHBS-Trans questionnaire was developed with the following guiding principles: focus on domains relevant to the lives of transgender women, preserve key NHBS indicators for comparability with other populations, and ensure questionnaire items are respectful and appropriate for transgender women. During August 2015–January 2016, CDC conducted a literature review to identify survey tools that have been used in studies that included transgender persons. As a starting point for the literature review, a draft of a systematic review table and the search strategies used to identify the articles included in the evidence table were provided (6). CDC replicated these search strategies to identify any new articles that had been published since the original search was performed (i.e., January 1, 2008–November 30, 2015) or articles describing a study of transgender persons that might contain a survey instrument but might not have met the inclusion criteria used in that systematic review. CDC identified 170 relevant articles including all 116 of the articles listed in the evidence table and 54 articles that were not included in the evidence table. Full-length copies of the articles identified by CDC searches were obtained and examined to identify all survey instruments that were used in the study described in the systematic review. CDC obtained contact information for 82 unique corresponding authors and retrieved 24 survey instruments. To this group of surveys obtained from the literature review, CDC added three surveys obtained from researchers who were conducting transgender studies but had not yet published their findings. All survey items were entered into a Microsoft Access database to assist in review of the survey items. This database allowed organizing and searching 4,256 survey items by domain, construct, and source.

CDC assembled a CAB to provide consultation on questionnaire development. The CAB included nine members: eight were transgender women and one was a cisgender woman with extensive research and clinical experience working with transgender women. The majority (n = 5) of CAB members were either Asian, Black or African American, or Hispanic or Latina (Hispanic), although more members were White than any other race and ethnicity. (Persons of Hispanic origin might be of any race but are categorized as Hispanic; all racial groups are non-Hispanic.) CAB members were recruited from each of the four major regions of the continental United States (Midwest, Northeast, South, and West) to ensure geographic representation.

Many questionnaire items were selected or adapted from the standardized set of questions used to collect information among the core NHBS populations. In addition, new questionnaire sections (e.g., gender identity and medical gender affirmation) were added to tailor the questionnaire for use among transgender women. The order of questions was designed to minimize the cumulative emotional toll of potentially distressing questions about stigmatized behavior, experiences of discrimination, assault, and suicidality. Certain measures of sociodemographic characteristics and social determinants of health among transgender women are common to all topics of reports included in the MMWR supplement (Table 1).

Data Collection

During June 2019–February 2020, project areas collected biobehavioral and contextual data implementing recruitment and operational procedures (https://www.cdc.gov/hiv/pdf/statistics/systems/nhbs/NHBS-Trans_Operations_Manual.pdf). Recruitment started with a limited number of initial participants (i.e., seeds) who were referred by community-based organizations and persons from the local population of transgender women. Initial recruits who completed the eligibility screener and were eligible were interviewed, and those who completed the interview were asked to recruit up to five transgender women whom they knew personally. Those persons, in turn, completed the interview and were asked to recruit others using a system of coded coupons. Participants whose sex listed at birth was male and their gender identity included a gender not listed here but did not include woman or transgender woman could not recruit others. The recruitment process continued until the sample size was reached or data collection ended. Project area staff members conducted recruitment and data collection activities at established field sites (e.g., health department or community-based organization’s offices) or in a mobile van parked in an established location at a field site.

Each of seven participating project areas planned to recruit approximately 200 eligible transgender women. Recruited and consented participants completed an interviewer-administered, standardized, in-person anonymous questionnaire using computer tablets. Key questionnaire components included demographics, sexual behaviors, alcohol use, injection and noninjection drug use, HIV testing experiences, health conditions, access to care and prevention activities, gender-affirming medical treatment, social support, experiences of abuse and harassment, and mental health, including suicidality. Each interview took an average of 40 minutes to complete (https://www.reginfo.gov/public/do/PRAViewICR?ref_nbr=201902-0920-007 and https://www.cdc.gov/hiv/pdf/statistics/systems/nhbs/NHBS-Trans_CRQ.pdf).

HIV Testing

NHBS-Trans offered all participants anonymous, blood-based rapid HIV testing. Participants who did not self-report a previous HIV diagnosis and had a first rapid test that was reactive received a second orthogonal rapid test (i.e., rapid-rapid testing algorithm) to confirm infection. Nonlaboratory staff members in project areas conducted HIV rapid tests in field settings under Clinical Laboratory Improvement Amendments waivers (https://www.cms.gov/regulations-and-guidance/legislation/clia/downloads/howobtaincertificateofwaiver.pdf). Participants received their HIV test results after completing the interview and were referred to treatment and other health and social services as needed. Participants who self-reported a previous HIV diagnosis, had at least one reactive HIV rapid test, or both, and consented to specimen storage, provided dried blood spot specimens for future laboratory testing (e.g., HIV viral load testing at CDC). Participants received incentive payments (e.g., a gift card) for the interview and HIV testing in person. Participant compensation for incomplete surveys could be offered in accordance with local policies. Incentives were given to those interviewed and tested for HIV (approximately $25 for each). Additional rewards (approximately $10) were paid to those who successfully recruited others. Local project areas determined the amount and type of incentives deemed appropriate for the local populations being interviewed and tested.

Qualitative Evaluation

During data collection, CDC conducted a surveillance system evaluation using semistructured qualitative interviews (i.e., interviews with a script of open-ended questions) with 14 key project area staff members across project areas to assess their experiences with staff member support, NHBS-Trans project development and implementation, and community engagement (Rushmore J, CDC, unpublished data, 2019). The interview guide is available (Supplementary Interview Guide, https://stacks.cdc.gov/view/cdc/137444). After data collection concluded, CDC conducted a questionnaire evaluation among project area interviewers to assess the general performance of questions, with a focus on acceptability of questionnaire items for transgender women.