Evidence suggest better outcomes results when a program is responsive to the significant needs of this population.
A recent literature review found that continuation is still an ongoing challenge in providing pre-exposure prophylaxis (PrEP) for adolescent girls and young women (AGYW), necessitating more investment in less adherence-dependent formulations.
The World Health Organization has recommended tenofovir-based oral PrEP as an additional HIV prevention option for individuals at substantial HIV risk and as part of a comprehensive prevention package. One population being prioritized for PrEP access expansion is AGYW, defined in the review as cisgender and transgender girls and women aged 15 to 29 years.
Globally, cisgender AGYW are disproportionately affected by HIV. Although HIV incidence in the general population across sub-Saharan Africa has declined, incidence among cisgender AGYW has either stabilized or increased. Transgender AGYW also experience a disproportionate burden of HIV, including when compared to older transgender women. Further, transgender women’s collective global risk of HIV infection is 12 times higher than the general population.
This increased susceptibility for both cisgender and transgender AGYW is multifaceted and driven by a range of biological, behavioral, social, and structural factors, including harmful gender norms, gender-based violence, and economic and educational inequalities, according to the study. Transgender AYGW’s risks are also exacerbated by transphobia-fueled rejection from society, violence, and stigma and discrimination in health facilities.
Investigators have identified 3 key phases in the PrEP continuum of care. These include the interest or willingness phase, the uptake phase, and the continuation phase. The latter encompasses persistent participation in oral PrEP programs, including use that follows national or international clinical guidance.
The review authors noted that “continuation” is distinct from and larger than “adherence” because patients’ adherence to PrEP can vary during the continuation phase.
“As others have noted, continuation remains a central challenge in PrEP programming for cisgender AGYW that warrants further exploration,” the authors write. “This exploration would benefit from more consistent measures of continuation and a clearer metric defining success.”
Of 2168 unique citations identified for the literature review, 50 articles were included, 24 of which included transgender women. Notably, in cases in which transgender women and men who have sex with men (MSM) were both included in a study population, the percentage of participants who were transgender was often low, sometimes below 3%. Many studies of cisgender women did not provide adequate information to determine the proportion of participants who were young women.
Across the PrEP continuum of care, 3 studies measured PrEP interest or willingness, 2 assessed PrEP uptake, and 9 documented PrEP continuation. Six studies included both uptake and continuation outcomes.
Studies examining PrEP continuation assessed the outcome over a range of follow-up periods, from 1 month to 24 months post-initiation. Four studies used PrEP-related visit attendance with a provider as a measure of continuation and 4 assessed continuation through self-report. Refill data were part of 2 studies that also used self-reports and Wisepill, a technology providing a date and time stamp for each pill container opening, was used in another study. Biologic measures of PrEP continuation, using intracellular tenofovir-diphosphate levels (TDF) in dried blood spots, was used in 3 studies.
The various studies with cisgender AGYW had diverse rates of continuation but all showed decline over time. At 1 month, continuation ranged from 57% with the Determined, Resilient, Empowered, AIDS-free, Mentored, and Safe (DREAMS) program in Kenya to 37% among pregnant and postpartum women receiving PrEP in Mother and Child Health (MCH) clinics in Kenya. By 3 months, the continuation rate was 37% in the DREAMS program and 24% in the MCH clinics.
As within the studies of cisgender AGYW, studies with transgender girls and women used a variety of measures for continuation and 3 of the 5 included measures of adherence. Only one study, by Songtaweesin et al., included a control, which found no significant difference in adherence between intervention and comparison groups. Adherence rates in both groups were close to 50% at both 3 and 6 months, and researchers found 68% retention in care among transgender women in both the control and intervention groups at 6 months.
A United States-based study testing the integration of PrEP in a setting designed for LGBTQ youth found that both retention and adherence were suboptimal. Through TDF assay results, they found that only 26% of young transgender women and MSM had achieved protective status, with another 13% having somewhat protective status 3 months or more after initiation.
The review authors had several key conclusions following their study. First and foremost, they emphasized that more data are needed regarding oral PrEP use by AGYW to inform policy and decision-making. Researchers should focus on intentional recruitment of AGYW participants and should always disaggregate findings by sex, age, and gender identity.
“While there is a need for continued research and analysis of routinely collected data, program implementers do not need to wait to act,” the authors write. “They should start contemplating the full range of benefits to AGYW offered by a program. These benefits include HIV prevention behaviors as well as building social networks and reducing isolation, increasing self-worth and partner communication, and addressing gender-based violence.”
Despite this lack of data, the authors did note that the evidence suggest better outcomes results when a program is responsive to the significant needs of AGYW. It is extremely challenging for a single intervention to overcome the multifaceted, complex barriers to PrEP initiation and continuation for AGYW. Recent evidence suggests that a holistic, community-based approach to PrEP program implementation among AGYW might be more successful and necessary, according to the investigators.
Finally, the authors said a layering of differentiated approaches merits further utilization and optimization. Results from the included studies found that it is possible to integrate oral PrEP into a range of settings, including settings involving other sexual and reproductive health services for cisgender women. For transgender women, integration in existing LGBTQ-focused spaces, public facilities, and new PrEP-focused comprehensive services designed for specific populations may be effective.
Furthermore, leveraging information about individual-level factors that encourage initiation and continuation is important to designing attractive, efficient programs that cater to various needs and populations. For example, 1 included study found that considering factors such as a sexually transmitted infection diagnosis can be leveraged to encourage PrEP uptake.
“Finally, continued investment is needed for PrEP programming in online spaces, another area where programming for cisgender AGYW can be informed by successful efforts directed toward transgender AGYW,” the authors concluded. “Now more than ever we need to leverage online spaces and virtual connections to communicate, share information, and be informed by AGYW of their needs and desires; to provide opportunities for online-to-offline service provision; and to influence the larger constructs of social isolation, self-esteem, and communication that in-person PrEP programs for cisgender AGYW have successfully address, and which are all part of effective epidemic control.”
Dayton RL, Fonner VA, Plourde KF, Sanyal A, Arney J, Orr T, et al. A Scoping Review of Oral Pre-exposure Prophylaxis for Cisgender and Transgender Adolescent Girls and Young Women: What Works and Where Do We Go from Here? AIDS and Behavior. 2023. doi:10.1007/s10461-023-04043-x