Perspectives on and preferences for on-demand and long-acting PrEP among sexual and gender minority adolescents assigned male at birth

Abstract

Introduction:

Sexual and gender minority (SGM) adolescents assigned male at birth who have sex with male partners are at increased risk for HIV. Daily oral pre-exposure prophylaxis (PrEP) is available for minor adolescents in the United States, who may have difficulty with adherence. Adolescents’ perspectives toward emerging PrEP delivery methods that would not require daily pill-taking have not been well-explored.

Methods:

We conducted online surveys and focus groups in November 2018-February 2019 with 59 SGM adolescents assigned male at birth who reported sex with or attraction to male partners. Questions assessed their perspectives on and preferences for biomedical (on–demand, injection, implant) and non-biomedical HIV prevention options (condoms). Data were analyzed thematically.

Results:

Of all prevention options, the implant and condoms were rated highest, and participants preferred the implant over other biomedical options. Convenience, duration, and ease of access played important roles in adolescents’ preferences. Parents were viewed as a barrier to taking PrEP regardless of delivery method due to their role in adolescents’ ability to access healthcare.

Conclusions:

SGM adolescents are interested in long-acting PrEP, yet also perceive substantial obstacles to using biomedical prevention that reflect adolescents’ developmental contexts.

Policy implications:

State laws expanding adolescents’ access to HIV preventive services, sex education inclusive of PrEP information, and parent- and provider-initiated PrEP conversations can reduce barriers regardless of PrEP delivery method. Research to accelerate the availability of long-acting implants for adolescents is needed.

Introduction

Sexual and gender minority (SGM) adolescents assigned male at birth (e.g., gay and bisexual adolescent boys, transgender girls) in the United States (U.S.) are disproportionately affected by HIV, accounting for 73.3% of new infections among adolescents aged 13–19 from 2010–2014 (Ocfemia, Dunville, Zhang, Barrios, & Oster, 2018). This group of adolescents may be more vulnerable to HIV in part because they are more likely to engage in sex that poses higher HIV transmission risk (e.g., condomless anal sex [CAS] with partners also assigned male at birth). Indeed, male-to-male sexual transmission accounted for 92% of new infections among this group (Ocfemia et al., 2018), and the scant epidemiological research on transgender women suggests that over 1 in 3 diagnoses are in 13–24 year olds (Clark, Babu, Wiewel, Opoku, & Crepaz, 2017). Daily oral PrEP was first approved for U.S. adolescents in May 2018 (U.S. Food and Drug Administration, 2018) following studies demonstrating its safety, acceptability, and tolerability among this age group (Gill et al., 2017; Hosek et al., 2017). As PrEP is over 90% effective at reducing sexual transmission of HIV when taken as prescribed (Centers for Disease Control and Prevention, 2018), it has untapped potential to curb infection rates among adolescents (Pace, Siberry, Hazra, & Kapogiannis, 2013). However, as individual, contextual, and structural factors may hinder the implementation of daily oral PrEP in this population (Fisher, Arbeit, Dumont, Macapagal, & Mustanski, 2016; Hosek et al., 2016; Mustanski et al., 2017), research is needed to explore the acceptability of alternative delivery methods that may be easier on adolescents.

Research suggests that PrEP uptake among adolescents is extremely low, and even after the approval of PrEP for U.S. adolescents, barriers exist to its uptake and maintenance. Only 1.5% of the 148,147 filled PrEP prescriptions between 2012–2017 were for minors under 18 years of age; of the prescriptions for minors, only 16.5% were for male adolescents (Magnuson, Hawkins, & Mera, 2018). In two different samples of youth, self-reported uptake among SGM adolescents assigned male at birth was 0.5% in 2015 (Thoma & Huebner, 2018) and 2.5% in early 2018 (Macapagal, Kraus, Korpak, Jozsa, & Moskowitz, 2019). SGM adolescents are becoming increasingly aware of and interested in PrEP (Fisher, Fried, Desmond, Macapagal, & Mustanski, 2017; Fisher, Fried, Ibrahim Puri, Macapagal, & Mustanski, 2018; Macapagal et al., 2019; Thoma & Huebner, 2018). However, they may be reluctant to take it out of concern that their parents may discover evidence of them taking PrEP (e.g., pill bottles, insurance statements) and/or inadvertently learn about their same-sex/gender sexual activity or sexual minority identity (Fisher et al., 2016; Hosek et al., 2016; Mustanski et al., 2017). As shown in the ATN 113 trial, youth who are taking daily oral PrEP experience challenges with medication adherence and maintenance, which ultimately impacts PrEP’s effectiveness (Hosek et al., 2017). Combined with the quarterly clinic visits necessary for PrEP maintenance, challenges scheduling appointments outside of school hours, lack of transportation, and cost of monthly medication refills, among other barriers (Fisher et al., 2016; Hosek et al., 2016), taking PrEP as directed may seem insurmountable for adolescents.

Other biomedical HIV prevention approaches being developed and tested for adult populations, and not currently approved for use in the U.S., have the potential to overcome uptake and adherence barriers to daily oral PrEP among adolescents. On-demand dosing of oral PrEP, also known as event-driven PrEP, has been found to be highly efficacious among adult MSM and transgender women (Molina et al., 2015; Molina et al., 2017). As it involves taking fewer pills – two pills 2–24 hours prior to a sexual encounter, one pill 24 hours after the first dose, and another pill 24 hours after that – it also can be more cost-effective (Durand-Zaleski et al., 2018; Ouellet, Durand, Guertin, LeLorier, & Tremblay, 2015). Studies among adult MSM and transgender women found that user preferences for on-demand versus daily PrEP depended on factors such as one’s ability to anticipate sexual encounters (Patel et al., 2018; Reyniers et al., 2018), perceived efficacy and ease of on-demand dosing, and its potential impact on intimacy (Patel et al., 2018). It is possible that on-demand PrEP may be acceptable among adolescents as the less-frequent dosing may be less costly and taking pills only as needed may be more discreet; however, like their adult counterparts, youth may have difficulty adhering to the dosing regimen and have concerns about their ability to predict when sex will occur.

Promising alternatives to oral PrEP include long-acting injectables, which are currently in Phase III trials with adults (U.S. Department of Health and Human Services, 2017), and implants, which have begun Phase I/II trials with adults (CAPRISA 018; Centre for the AIDS Programme of Research in South Africa, 2018). Current formulations of injectable cabotegravir provide protection against HIV for approximately 2 months after a lead-in period with daily pills (HPTN 083; HIV Prevention Trials Network, 2018). Implants aspire to provide protection for longer durations between 3 months to 1 year and could be similar in size or larger than other types of implants currently on the market (e.g., hormonal implants; Flexner, 2018). Research on attitudes toward long-acting methods have primarily focused on adult MSM and transgender women’s perspectives of injectable PrEP, which typically (but not uniformly) has been found to be favored over oral PrEP (e.g., Calder et al., 2018; Goedel et al., 2017; Greene et al., 2017; Parsons, Rendina, Whitfield, & Grov, 2016; Patel et al., 2018), though specific preferences depend on individual and contextual characteristics. For example, participants preferring injectable methods emphasized their convenience and simplicity of use (Calder et al., 2018), the prospect of better medication adherence (Biello et al., 2018; Patel et al., 2018), and lower likelihood of visibility or detectability leading to reduced stigma (Biello et al., 2018).

In a study that compared attitudes toward oral, injectable, and implantable PrEP options, MSM preferred daily oral pills and implants, followed by injections; however, when including condoms as an HIV prevention option, participants most frequently preferred condoms, followed by implants and daily oral PrEP (Greene et al., 2017). Across studies, concerns about these longer-acting methods included a dislike of needles or medical procedures, side effects including potential scarring associated with implants, and worries about safety and level of protection conferred by the medications (Biello et al., 2018; Calder et al., 2018; Greene et al., 2017; Patel et al., 2018). For adolescents, it is possible that longer-acting methods may be preferable to oral PrEP, particularly if they are less detectable; on the other hand, having minor surgical procedures or regular injections that require multiple clinic visits and higher potential for parental involvement (e.g., for transportation, insurance, aftercare) may be a deterrent.

Despite the advantages of these emerging prevention methods, they may have other features that may lead to unforeseen challenges in uptake, use, and adherence for adolescents. Investigating SGM adolescents’ perceptions of these prevention technologies before they are tested in adolescents can inform product design, marketing, and implementation, and ultimately increase uptake and adherence among youth at highest risk for HIV infection. The present study used online focus groups and surveys to explore perspectives of SGM adolescents assigned male at birth on three emerging PrEP delivery methods: on-demand oral PrEP, and long-acting injectable and implantable PrEP. We focused on this particular group of adolescents given high HIV prevalence in cisgender young MSM and transgender women and other gender minorities assigned male at birth who have sex with male partners. Overall preferences of these methods relative to using condoms for HIV preventions were also explored.

Methods

Participants and procedures

Inclusion criteria for the study were 1) U.S. home address, 2) assigned male at birth, 3) ages 14–17, or age 18 and still in high school or middle school,¹ 4) ever had sex with a male partner, or identified as gay, bisexual, pansexual, asexual, queer, or questioning/unsure and had ever had sex, 5) HIV-negative or unknown status, and 6) can read and write in English. Participants were recruited nationally through paid Facebook/Instagram advertisements targeted to 14–18 year olds who liked organizations and interests culturally relevant to the LGBT community, through unpaid posts on reddit channels dedicated to LGBTQ teens (permission to post information about the study was first obtained from reddit channel moderators), and through emails sent to individuals in IRB-approved research registries.

All advertisements contained a link to an online eligibility survey hosted in the secure survey platform REDCap. Eligible individuals were directed to an online consent form, and individuals ages 14–17 completed additional questions to assess understanding of study procedures and decisional capacity as an additional protection for minors given the waiver of parental permission (UCSD Task Force on Decisional Capacity, 2003). Screener completions were reviewed by the study data manager daily to identify duplicate or suspicious individuals (e.g., similar names or contact information, unusual email addresses, multiple screener completions in brief period of time), timestamps and length of time taken to complete screener, following best practices in online research (Ballard, Cardwell, & Young, 2019; Teitcher et al., 2015).

Eligible individuals who agreed to participate (and correctly answered all decisional capacity questions if ages 14–17) were contacted by telephone to verify their identity (i.e., by providing their name, age, date of birth, and username entered on the online eligibility survey) and enrolled in an online focus group. The Northwestern University Institutional Review Board (IRB) approved all procedures including waiver of guardian permission for minimal risk research. An NIH Certificate of Confidentiality was issued to provide additional privacy protections to participants by prohibiting disclosure of identifiable, sensitive research information to those not connected to the study.

Consented participants were emailed a link to a baseline survey to complete prior to focus group participation, and completers joined one of the six online focus groups conducted in November 2018 to February 2019 on a secure website accessed via username and unique password. The focus groups were asynchronous, open for up to 1 week, and moderated by two members of the research team. Questions were posted on the first day of the focus group and participants were permitted to answer at their convenience. Participants who answered a majority of the questions were sent a link to a post-focus group survey, and a subset of participants were invited to complete a brief member checking survey to provide feedback on the preliminary qualitative analyses. Participants who completed the majority of focus group questions and the post-focus group survey received a $30 online gift card, and those in the member checking survey received an additional $15.

Baseline measures

Demographics.

Participants completed survey items assessing age, ZIP code and state of residence, living situation, highest level of parental education, race and ethnicity, assigned sex at birth, gender identity, sexual orientation, and disclosure of sexual orientation and gender identity to parents. Rural-Urban Commuting Area (RUCA) codes, which convert ZIP code into urban or rural areas based on population density and commuting patterns, were used to determine participants’ urban-rural residence status (Rural Health Research Center, 2014; U.S. Census Bureau, 2018). Partway through data collection, a screener item was added to assess recruitment source (e.g., Facebook, Instagram).

Healthcare access, use, and experiences.

Investigator-created questions assessed youth’s health insurance coverage, experiences with healthcare, and experiences navigating the healthcare system to better understand how such experiences may have informed their perspectives on PrEP. Items included whether they had health insurance and the source of insurance (parent, government, Medicaid, military, other), whether they had a regular doctor and had seen them in the last 12 months, whether they ever went to the doctor on their own, whether they had a medical condition that required regular doctor visits, and whether they had ever taken prescription medication as a teenager. Participants were also asked if they had ever asked their providers about condoms or other forms of HIV/STI prevention, if they had ever asked their provider about PrEP, and if they had ever disclosed their sexual orientation to a provider. All items except those noted had yes/no response options.

HIV risk and PrEP candidacy.

Participants were asked the following questions related to their sexual health: whether they had ever been tested for HIV and status if known; the gender of their sexual partners; whether they had CAS with any male partners in the past 6 months; whether they received any STI diagnoses in the past 6 months; their current relationship status and agreement (single and sexually active, single and not sexually active, monogamous relationship, open relationship); and for those currently sexually active, the HIV status of their main partner. Two items asked how likely they thought they were to become HIV-positive (1: extremely unlikely, 5: extremely likely) and their level of concern about it (1: extremely unconcerned, 5: extremely concerned; Napper, Fisher, & Reynolds, 2012); these were averaged to form a score indicating perceived vulnerability to HIV. PrEP candidacy was determined using CDC guidelines for adults (Centers for Disease Control and Prevention, 2018). These included: reporting HIV status of their main partner as HIV-positive, reporting relationship status as non-monogamous (e.g., open relationship; monogamous relationship with partner of unknown status; single and sexually active), and reporting having had CAS in the last 6 months or an STI diagnosis in the last 6 months.

PrEP awareness and barriers.

Participants read a brief description of PrEP, then answered two yes/no questions assessing whether they had heard of PrEP prior to today and, if so, whether they had ever taken PrEP (Bauermeister, Meanley, Pingel, Soler, & Harper, 2013). Participants were also asked to rate the importance (0: not important, 2: very important) of 12 different barriers to taking PrEP (e.g., access, cost) adapted from a previous measure (Awad, Sagrestano, Kittleson, & Sarvela, 2004).

Focus group content

Animated videos.

Using Vyond software, we developed four animated educational videos covering daily oral, on demand, injectable (2-month duration), and implantable (3 month dissolvable and 1 year replaceable) PrEP. Each video was between 2–3 minutes long and covered basic information on the method, how one would receive or take the medication, dosing frequency/clinic visits, efficacy, side effects, and perceptibility. In addition, the implant video described the anticipated size of the implants and insertion procedure. Videos indicated that insurance and medication assistance plans would likely defray some or all the costs of any delivery method.

The videos were based on information presented in a prior study of adults’ perspectives on PrEP (Calder et al., 2018; Greene et al., 2017), published literature (Grant et al., 2010; Hosek et al., 2017; Molina et al., 2015), government resources (Centers for Disease Control and Prevention, 2018, 2018; U.S. Department of Health and Human Services, 2017), and consultation with experts involved in research and development of the new methods (Hope & Kiser, 2015–2020). Scripts were written at an 8^th grade reading level. The research team also consulted with the investigative team’s standing online youth advisory council of SGM adolescents assigned male at birth, who provided suggestions on the information they would need to make an informed decision about the different delivery methods, the clarity and accessibility of the video scripts, and aesthetic preferences for videos and narration. Youth also gave feedback on the animated videos themselves. Videos are available at https://doi.org/10.21985/n2-0zvv-te03.

Focus group questions.

Participants first watched the daily oral PrEP video to ensure all had the same information about this method. They were then asked to visit 4 different sections of the focus group website, each representing a different topic: PrEP on demand, injections, implants, and comparison of the different forms of PrEP. In each of the first three sections, participants were shown the videos on the emerging PrEP methods (on demand, injection, implant), and after each, were asked to answer parallel questions assessing their likes and dislikes about, and barriers and facilitators to using that method (What would you like about [PrEP on demand / the shot / the implant]? What would you dislike about it? What might get in the way of you using it? What is the biggest obstacle for you? What would make it easier to get on it?) Participants were instructed to visit the fourth section after they finished learning about the different forms of PrEP, where they were asked to compare the different methods to each other, describe whether they were interested in one particular method over the others, and what life experiences informed that choice.

Post-focus group and member checking surveys

The post-focus group survey began with a table summarizing the features of the different HIV prevention options described in the focus groups. Participants were then asked to rate the convenience, likelihood of uptake, and difficulty or ease of adherence (1: very difficult, 5: very easy) of condoms, daily oral PrEP, PrEP on demand, PrEP injection, PrEP implant replaced/refilled every 3 months, and the PrEP implant replaced/refilled once a year. Participants also ranked their preference for the above options from most (1) to least preferred (6), followed by an open-ended question asking them to describe their reasons for selecting their most preferred option.

A subset of focus group participants (n = 20), representing a diversity of sociodemographic characteristics and who demonstrated varying perspectives on novel PrEP modalities in the focus groups, were sent an online survey 6 weeks after the conclusion of the focus groups. The survey contained an infographic, which summarized the primary findings of the focus group. They then answered questions assessing their perspective on our conceptualization of the results; overall, youth reported that our interpretation of the focus group conversations was accurate based on their experience in the study.

Data analysis

We explored the demographic characteristics, healthcare experiences, and overall preferences for the various PrEP methods using descriptive, parametric, and non-parametric analyses conducted in SPSS 25. Transcripts were compiled from all prompts, responses, and follow-up posts within the online focus group, and imported into Dedoose (2019) for analysis. An inductive approach was used to code transcripts at the individual level by two independent coders. Codes were grouped by similarity using constant comparative analysis to produce code groups, or parent codes, and open and axial coding was used to identify and categorize excerpts of similar themes into child and grandchild codes (Glaser, 1965). Definitions were applied to every code and each code group was reliability tested for consensus among coders. A pooled kappa of 0.85 indicated good intercoder reliability (De Vries, Elliot, Kanouse, & Teleki, 2008). Coders then reviewed excerpts and discussed disparities in code applications until consensus was reached.

Results

Table 1 describes participant demographic characteristics. Participants (N = 59) were between ages 14 and 18, with a mean age of 16.42 years (SD = 0.88). The sample was racially diverse; 45.8% of participants were youth of color (n = 27). Most participants identified as gay (n = 43; 72.9%), and 94.9% of participants were cisgender male (n = 56). Participants were from 23 states, with most representing Southern states (40.7%; U.S. Census Bureau, 2015). Thirty-three participants received a question about where they first heard of the study. Most were recruited through Instagram (51.5%), followed by participant registries (21.2%), Facebook (18.2%), and Reddit (9.1%).

Table 1.

Descriptive statistics (N = 59)^a

	n	%
Age (M = 16.42, SD = 0.88)
14	1	1.7
15	10	16.9
16	13	22.0
17	33	55.9
18	2	3.4
Race/ethnicity
White	32	54.2
Black or African American	1	1.7
Hispanic/Latinx	20	33.9
Asian	3	5.1
More than one race	3	5.1
Sexual orientation
Gay	43	72.9
Bisexual	9	15.3
Pansexual	3	5.1
Queer	2	3.4
Questioning/Unsure	2	3.4
Gender identity
Man	56	94.9
Woman	1	1.7
Genderqueer	1	1.7
Gender nonconforming	1	1.7
Outness to parents/guardians
Not out to parents	19	32.2
Out to at least one parent	40	67.8
Living situation
Living with parents	57	96.6
Not living with parents	2	3.4
Geographic region
Northeast	8	13.6
Midwest	12	20.3
South	24	40.7
West	15	25.4
Urban/rural
Urban	58	98.3
Rural	1	1.7
Highest level of parental education
Less than college degree	20	33.9
College degree or higher	36	61.0
I don’t know	2	3.4
I do not want to answer	1	1.7
Recruitment source (n = 33)
Facebook advertising	6	18.2
Instagram advertising	17	51.5
Participant registry	7	21.2
Reddit post	3	9.1

Note.

^aDiffering Ns in individual sections due to survey branching logic participants’ selecting “I do not want to answer” and/or items administered after initial data collection began.

Healthcare experiences, PrEP awareness and overall HIV risk are presented in Table 2. Most participants had health insurance (n = 51; 86.4%). Common healthcare experiences reported by the sample include: having a regular doctor (n = 45; 77.6%), visiting their regular doctor in the previous 12 months (n = 42; 93.3%), and taking prescription medication as a teenager (n = 45; 76.3%). Less common experiences included: asking a healthcare provider about PrEP (8.5%) and having a medical condition that required them to see their provider regularly (24.1%). Most of the sample reported male sexual partners exclusively (74.6%), never being tested for HIV (55.9%), and having heard of PrEP before participating in the study (83.1%). Based on current CDC guidelines, 22.0% of the sample would be candidates for PrEP.

Table 2.

Healthcare experiences, PrEP awareness, and HIV risk (N = 59)^a

	n	%
Has health insurance	51	86.4
Source of health insurance (n = 49)
Parent(s)	36	73.5
A state or local government program or community program	5	10.2
Medicaid	6	12.2
Military health care	2	4.1
Has a regular doctor (n = 58)	45	77.6
Has seen that doctor in last 12 months (n = 45)	42	93.3
Has asked healthcare provider (HCP) about PrEP	5	8.5
Has asked HCP about condoms or other ways to prevent HIV/STIs	17	28.8
Has told HCP about sexual orientation	23	39.0
Had a medical condition that required them to go to HCP regularly (n = 58)	14	24.1
Ever went to doctor or other healthcare provider on their own (n = 58)	16	27.6
Has taken prescription medication as a teenager	45	76.3
Gender of sexual partners
Only guys	44	74.6
Mostly guys but some girls	9	15.3
Guys and girls equally	3	5.1
Mostly girls but some guys	1	1.7
Only girls	2	3.4
Lifetime HIV testing
No	33	55.9
Yes	20	33.9
I don’t know	6	10.2
HIV status
HIV-negative	20	33.9
HIV status unknown	9	15.3
Not applicable: Never been tested	30	50.8
Ever heard about PrEP before today
No	10	16.9
Yes	49	83.1
Ever taken PrEP? (n = 49)
No	48	98.0
Yes	1	2.0
Perceived barriers to taking PrEP
Never heard of PrEP before	20	33.9
Don’t know where to get PrEP	33	55.9
Don’t have a way to get to clinic	21	35.6
Clinic is too far away	12	20.3
Don’t think the people who work at the clinic/doctor’s office are friendly to LGBTQ teens	21	35.6
Might run into people I know at the doctor’s office	10	16.9
Wouldn’t want people I know (like parents, friends, or partners) to find out I was taking PrEP	19	32.2
Don’t like taking medications	5	8.5
Concerned about side effects	9	15.3
Can’t afford it	25	42.4
Not at risk for HIV (n = 57)	11	19.3
Taking PrEP is something people do when they are older	2	3.4
HIV risk factors
Had condomless anal sex with male partner in last 6 months (n = 31)	16	51.6
Diagnosed with STI in last 6 months (n = 19)	2	10.5
Relationship status
Single and not currently having sex	32	54.2
Single and currently having sex with at least one person	13	22.0
Monogamous relationship	12	20.3
Open relationship	2	3.4
HIV status of primary or most frequent sex partner (n =27)
HIV-negative	21	77.8
I don’t know	6	22.2
PrEP candidate?
No	46	78
Yes	13	22.0
	M	SD
Perceived vulnerability to HIV (range 1.00–5.00)	3.14	0.99

Note. HCP = health care provider.

^aDiffering Ns in individual sections due to survey branching logic and/or participants’ selecting “I do not want to answer”

Perspectives on PrEP across Methods

After each video, participants were asked to report on their likes and dislikes of each method. Across methods, themes centered around perceived effectiveness, perceptibility and visibility, schedule of dosing, chances of missing doses, and the procedures to get PrEP, and as such they will be discussed together in the following paragraphs. Where participants did note certain preferences, barriers, and facilitators specific to a particular method, those will be mentioned explicitly. Almost all participants expressed interest in some form of PrEP, and few (n = 3) stated that they would not use PrEP at all.

Convenience and ease of use.

Across PrEP delivery methods, certain features were described as easier or more convenient, which was also associated with greater perceived effectiveness and/or likelihood of uptake. For example, participants often discussed dosing schedules and duration of protection together with perceived effectiveness. Although the videos described all forms of PrEP as being highly effective if taken as directed, many viewed the daily pill, injection, and implant to be most effective because they felt the dosing schedules were easier to remember and more likely to provide uninterrupted protection from HIV. This is exemplified in one participant’s comment about the implants: “I really like the idea of set it and forget it, which is why if I were to get an implant I would probably get the [1 year] one, and since you’d be less likely to miss doses I’d be more comfortable having sex knowing I was protected.” (#140, age 16, gay, male, White)

In addition, duration of protection and frequency of clinic visits were often discussed together as factors that would either promote or discourage use of PrEP across modalities. Participants disliked how methods with shorter durations of coverage, like the injection and the removable implant, meant more frequent visits to their healthcare provider. Participant 372 (age 17, gay, male, Latinx) summarized this by saying, “I do not like how I’d have to go into the clinic six times per year to receive the injection. It seems like too much of a hassle, especially for those that don’t live close to a clinic.” Yet although shorter duration of protection was viewed as a negative feature for some, many youth also expressed how longer-acting formulations would require greater commitment since, unlike oral PrEP, they could not stop taking PrEP at their convenience, and because each method also required use of oral PrEP upon initiation and/or discontinuation.

Perceptibility and visibility.

Participants liked when delivery methods were less perceptible or visible, but also expressed that all methods could be detected somehow. Because most participants wanted to conceal their PrEP use from friends, family, and partners, many were concerned that pill bottles would be found, that implants would be seen, that side effects from implants or injections would be evident, and that clinic visits or prescriptions would appear on insurance explanation of benefits statements which would alert parents to youth’s use of PrEP. Some expressed concerns about parents/guardians learning about their sexual identity or that they were sexually active if they took PrEP. For example, Participant 557 (age 17, gay, male, Latinx) shared, “I’m a little bit shy on letting my parents know that I am sexually active because they may end up finding out I am gay… I’m not scared of being shunned or anything, it’s just finding out the right time to tell them. And if I’m taking medication to prevent HIV it will connect the dots for them.”

That said, some felt the implant was the most private: “it is discreet and there wouldn’t be any pills laying around for my parents to find.” (#524, age 17, gay, male, Latinx). Others felt “the shot can be concealed easily,” and “…[the shot]’s easier to disguise because a pill bottle will print the drug that’s in it on the label, while a teenager could just say [the shot] is just a routine checkup or a follow up on bloodwork.” (#56, age 15, gay, male, Asian)

Side effects of medications and procedures.

Across all methods, participants most frequently discussed disliking the possibility of side effects, which would not only be uncomfortable but could also indicate to friends, family, and partners that they were taking PrEP. These included the gastrointestinal side effects of the medication itself, and for longer-acting methods, pain and scarring at the insertion or injection site. Youth perceived the side effects from the injection and implant procedures to be more severe, and mentioned these more often than the side effects of the medication itself. For instance, participants described that the implant was too large, or that the procedures to place and remove the implant were too invasive: “That thing’s enormous. It’s like shoving a Capri Sun [drink] straw into your arm. Honestly, I’d mostly just be squeamish about getting it put in.” (#372, age 17, gay, male, Latinx). Some participants also expressed worry over potential drug interactions: “As someone who takes prescribed medicine for another condition, I want to ensure that my health will not be compromised by introducing a new medication.” (#732, age 17, questioning/unsure, male, Latinx).

Barriers and Facilitators across PrEP Modalities

After participants were asked about their likes and dislikes, they identified barriers to using each different PrEP method and made suggestions for overcoming them. Youth’s concerns about accessing PrEP that were common across the different delivery methods and the prominent role of parents and healthcare providers in these decisions are detailed. Note that barriers are distinct from participants’ dislikes, the latter of which participants did not necessarily view as impediments to their overall interest in the different PrEP methods.

Accessibility.

Access to healthcare was one of the most frequently discussed barriers and included lack of transportation, lack of proximity to clinics, and lack of experience accessing care independently. Participant 540 (age 17, bisexual, male, White) stated, “Logistically, not being able to go to a clinic and order/fill a prescription myself would stop myself from being able to take PrEP”; echoing this sentiment, Participant 658 (age 16, gay, male, Asian) from a rural area described driving 3 hours roundtrip to get to a clinic or pharmacy. Even scheduling appointments was daunting because many had never navigated the healthcare system on their own. Youth described that ideally, obtaining PrEP over the counter, via mail, or “…in school health centers so that it would be accessible away from my parents” (#655, age 16, gay, male, multi-racial) could circumvent several access barriers. In addition, even though the videos stated that PrEP could be covered by insurance or medication assistance plans as with oral PrEP currently, participants indicated that cost made PrEP options seem out of reach. As participants expressed that they were financially dependent on their parents and preferred not to involve them in their sexual health decisions, they felt the need to pay out of pocket and/or not use insurance.

Privacy.

Youth’s ability to access and pay for PrEP were related to broader concerns about privacy, defined as the potential for PrEP to be seen by or visible to others, or being unable to conceal access of services needed to get PrEP from others – particularly parents. Participant 908 (age 16, pansexual, genderqueer, Black) said, “…my parents always check the statement, so I doubt I’d be able to get the PrEP without them finding out.” Relatedly, participants felt that needing parental consent for medical services would be an obstacle to PrEP use. Participant 508 (age 16, gay, male, White) expressed concerns about privacy and consent: “I live in a very small town where there is little to no public worry about HIV, so going to a small town pediatrics [office] and asking about HIV preventative drugs can seem an awkward situation… This may just be my region but I cannot go in to a doctor’s office without an adult over the age of 18.” Although this participant lived in a location where minors could self-consent to HIV prevention, testing, and treatment at the time of the study, this comment suggests that youth may be unaware of mature minor laws and the distinctions between requesting HIV/STI services and general medical visits.

Parent and Provider Support.

Across several of these themes, support from parents and healthcare providers was viewed as key in facilitating access to PrEP. Participant 64 (age 17, gay, male, White) stated, “I honestly don’t think it would be an issue for me to get the pill itself or talk to my parents, in fact, they’ll be happier for them to know that I’m safe.” Other youth remarked on how comfort with providers, particularly those “explicitly knowledgeable about LGBT health which a PCP might not be” (#851, age 17, queer, male, Latinx), could facilitate PrEP uptake: “I’m always welcome by my doctor to talk about personal stuff or ask for sexual health medication or condoms.” (#184, age 17, gay, more than one race/Latinx)

Overall, these qualitative responses were largely consistent with youth’s ratings of different barriers to PrEP access or use in the baseline survey (Table 2). For example, not knowing where to get PrEP was ranked by most youth as a ‘very important’ barrier (55.9%), followed by not being able to afford it (42.4%), and believing people who work at the clinic/doctor’s office are not friendly to LGBTQ teens (35.6%). Of note, only one participant in the study had ever used PrEP. He described how several factors such as perceived parent support, implied provider support, and confidence navigating healthcare independently facilitated getting on PrEP: “I didn’t talk to my parents at all. No matter what they’d support me, but I felt like if I wanted to be on it, it had to be a decision I made on my own… I asked and got my prescription during a regular checkup.” (#900, age 17, gay, male, American Indian/Alaska Native and Latinx).

Method-Specific Barriers and Facilitators

Although most barriers and facilitators were common across PrEP delivery methods, youth expressed some views that were unique to each method.

PrEP on demand.

Participants expressed two significant barriers specific to this method: the perceived inability to have spontaneous sex and remembering to follow the dosing schedule. Participants stated that they would not always be able to anticipate when sex would happen, making adherence a challenge: “Trying to remember to bring the pill with me or knowing when I may need it would be hard. I would also probably be forgetful and not take it the few days after…. The biggest obstacle is knowing when to take the pill with me. Sometimes it’s hard to know if you are going to have sex before it happens.” (#856, age 17, gay, male, White). For many, the dosing schedule of PrEP on demand was perceived to lead to a greater chance of missing doses or having lapses in protection. Participant 540 (age 17, bisexual, male, White) expressed a sentiment shared by many: “A clear disadvantage… would be the worry about it being less effective as compared to taking a pill every day, and the rarity of taking the medicine might cause you to forget to take PrEP at all.” To address these concerns, participants suggested making PrEP on demand have a more straightforward dosing schedule, with fewer pills and less lead-time before sex. For a minority of youth, taking PrEP only as needed was appealing for its lower costs, its ease of initiation and discontinuation relative to long-acting methods, and its fit for youth who were having sex infrequently.

Injectable PrEP.

Substantial barriers to the injection were dislike of injections and frequency of the injection (every 2 months). Participant 140 (age 16, gay, male, White) described the cascading effects of their apprehension to get the injection: “I’d be nervous about getting a shot, especially since [the shot] happens often… which would make me want to put off the appointment more, which would probably mess with the dosing of it.” Participants had several suggestions that would make the injections more acceptable, including administration in their arm instead of buttocks, self-administration similar to some gender affirming hormones, and reducing the number of times a year the injection is given. Familiarity with injections for gender affirming hormones influenced two participants’ perspectives. For example, Participant 23 (17, bisexual, transgender woman, White) said, “Many of my friends who are trans have used shots for HRT [hormone replacement therapy] and it makes me less afraid of getting shots… I think this makes me much more likely to choose the shot than other people.”

PrEP Implant.

Most participants were concerned that this option may be more perceptible given its potential for scarring and visibility, despite being placed on the inside the upper arm area: “The visibility would be the largest problem as I’m not always wearing clothes to cover my upper arm and I wouldn’t want strangers or my family finding out.” (#166, age 17, gay, male, White). Many also described the side effects of the insertion/removal procedure, such as potential infections and scarring, as barriers to using implantable PrEP. Although the video described that the implant was unlikely to migrate, some youth still expressed fear this would occur. Participants also mentioned that the 3 month replacement schedule was too short and that quarterly clinic visits to replace it would be a barrier. Suggestions to improve the implant included making it last longer, making it less perceptible, and reducing insertion pain.

Overall Preferences and Rankings for HIV Prevention Methods

Following each focus group, participants quantitatively rated the convenience, ease of adherence, likelihood of use of the different PrEP delivery methods, and ranked their overall preference for the different methods. Means and percent endorsement are shown in Table 3. Participants also rated these attributes of condoms in order to assess their perspectives on the different PrEP methods versus an HIV prevention method readily available to adolescents. Of all the prevention methods, the yearly PrEP implant and condoms were rated by most as “convenient or very convenient” and “easy or very easy to adhere to”. However, the vast majority of participants reported that they were “likely or very likely to use” condoms, trailed by daily oral PrEP. When asked to rank order their preferred methods, most youth selected condoms (39.6%) closely followed by the yearly implant (37.7%); the remaining options were preferred by only a small minority of youth, with the injection and quarterly implant the least preferred (Table 3). The combined percentage of participants ranking any of the emerging methods (i.e., injection, yearly and quarterly implants) as their most preferred method was 41.5%, which is slightly greater than participants’ ranking of condoms, and surpasses the ratings of daily oral PrEP (11.3%) and PrEP on demand (7.5%).

Table 3.

Post-focus group survey data on perceived convenience, ease of adherence, and likelihood of use of different HIV prevention strategies and overall preference for strategy, means and percent endorsement (N = 53)

	Convenience	Ease of adherence	Likelihood of use	Overall preference for prevention strategy	Convenient/very convenient	Easy/very easy to adhere	Likely/very likely to use	Overall preference for prevention strategy
	M (SD)				n(%)
Condoms	3.79 (1.06)	4.00 (1.23)	4.23 (1.14)	4.57 (1.62)	39 (73.6)	38 (71.7)	45 (84.9)	21 (39.6)
Daily PrEP pill	3.51 (.99)	3.55 (1.08)	3.51 (1.15)	3.68 (1.54)	27 (50.9)	32 (60.4)	32 (60.4)	6 (11.3)
PrEP on demand	3.58 (1.29)	3.40 (1.38)	3.28 (1.34)	3.06 (1.61)	31 (58.5)	30 (56.6)	28 (52.8)	4 (7.5)
Bimonthly PrEP injection	3.09 (1.32)	3.04 (1.11)	2.70 (1.19)	2.72 (1.22)	24 (45.3)	21 (39.6)	14 (26.4)	2 (3.8)
Quarterly PrEP implant	3.17 (1.22)	3.11 (1.24)	2.58 (1.25)	2.87 (1.58)	24 (45.3)	24 (45.3)	14 (26.4)	0 (0.0)
Yearly PrEP implant	4.17 (1.28)	3.92 (1.12)	3.43 (1.32)	4.11 (1.86)	41 (78.8)a	37 (69.8)	29 (54.7)	20 (37.7)

Note.

^an = 52; one participant selected “I do not want to answer.” Responses for convenience, ease of adherence, and likelihood of use items ranged from 1–5, with higher ratings indicating more convenient, easier to adhere, and more likely to use. Responses for overall preference item is 1–6, with higher rankings indicating more preferred options.

When asked to explain their rationale for choosing their most preferred method, those who selected condoms indicated that their familiarity, widespread availability in stores, and cost were their primary reasons, as exemplified by Participant 166 (age 17, gay, man, White): “I chose condoms as my most preferred HIV prevention method due [to] its convenience, low cost, accessibility, and ability to protect against more than just HIV.” Those who selected the year-long implant typically named its duration and consistency of protection, and the convenience of not having to remember HIV prevention as drivers of their preference: “…in the long run it requires the least effort and forethought. I wouldn’t have to know if or when I’m going to have sex, and [I would] only deal with a few days of discomfort after it’s implanted.” (#969, age 18, bisexual, male, White)

Differences in Preferences and Rankings by Participant Characteristics

Finally, exploratory analyses examined whether ratings of and preferences for the different prevention methods differed by participant characteristics. Convenience, ease of adherence, likelihood of use, and overall preference did not significantly differ by age, race/ethnicity, gender, recent history of CAS, or the number of barriers to PrEP that participants rated as somewhat or very important. However, some differences emerged based on participants’ history of HIV testing and having discussed HIV prevention with a healthcare provider, and their perceived vulnerability to HIV. Regarding PrEP on demand, participants who had talked to a provider about HIV prevention (M = 2.76, SD = 1.48) rated adherence to this method more difficult than those who had not talked to a provider about prevention (M = 3.69, SD = 1.23), F(1,51) = 5.739, p = .02. Those who had not been tested for HIV or did not know whether they had been tested were more likely to use PrEP on demand (M = 3.59, SD = 1.26) than those who had been tested (M = 2.74, SD = 1.33), F(1,51) = 5.369, p = .025; they also perceived easier adherence to PrEP on demand (M = 3.79, SD = 1.30) than those who had been tested (M = 2.68, SD = 1.25), F(1,51) = 9.153, p = .004. No significant differences were seen regarding daily oral PrEP or condoms.

As for long-acting PrEP, those who had talked to a provider about HIV prevention were more likely to use the 3 month implant (M = 3.12, SD = 1.41) than those who had not (M = 2.33, SD = 1.10), F(1,51) = 4.911, p = .031. We observed a similar pattern for the yearlong implant (talked to provider: M = 4.00, SD = 1.12; did not talk to provider: M = 3.17, SD = 1.34), F(1,51) = 4.927, p = .031. Greater perceived vulnerability to HIV was significantly correlated only with greater perceived difficulty of attending clinic appointments for the bimonthly PrEP injection, r(51)= −.412, p = .002.

Discussion

Non-daily oral and long-acting PrEP delivery methods are on the horizon and promise to provide potential users with a variety of options to suit their HIV prevention needs. As SGM adolescents assigned male at birth who are at risk for HIV are potential consumers of these newer methods, their perspectives and preferences are vital in informing PrEP development, testing, and implementation, which ultimately may improve uptake and reduce adherence barriers. This study adds to the nascent literature on SGM minor adolescents’ views on daily oral and long-acting PrEP (Fisher et al., 2017; Fisher et al., 2018; Macapagal et al., 2019) and indicates that these adolescents are interested in long-acting PrEP, yet also perceive substantial obstacles to using biomedical prevention methods that reflect their developmental contexts.

Across methods, participants described several likes and dislikes consistent with previous research with adults (Biello et al., 2018; Calder et al., 2018; Greene et al., 2017; Patel et al., 2018). In contrast, however, adolescents’ developmental stage and reliance on parents for healthcare colored their perspectives on PrEP, both in general and regarding specific methods. Some participants remarked that their opportunities to have sex may be infrequent or unpredictable and thus liked the idea of on-demand PrEP, perceiving daily or long-acting methods to be unnecessary given their level of sexual activity. However, other adolescents also said that using PrEP so infrequently, combined with the perceived complexity of on-demand dosing, could make adherence challenging for them. The injection was thought to be less visible than other methods; however, the lead-in and discontinuation process with oral PrEP and dislike for injections were strong deterrents to its use, and more frequent clinic visits could arouse parents’ suspicions. Although youth favored implants with a longer duration of protection (1 year or more), they expressed unease with the insertion and removal procedures, and with the prospect that its size and potential for scarring would increase perceptibility by parents and partners.

When all prevention options were considered together, youth’s preferences were clear. The yearlong implant and condoms each were rated as “most preferred” by a plurality of participants, with nearly 40% of youth endorsing each, consistent with preferences among adult MSM (Greene et al., 2017). Condoms and the yearlong implant also were rated most convenient and easiest to use. These quantitative results, together with adolescents’ qualitative responses, suggests that the accessibility and affordability of condoms, increased likelihood of adherence to and duration of coverage of the implant, and perceived simplicity of both methods were among the most critical factors driving their preferences. Yet when youth were asked about likelihood of use, however, condoms were rated highest, trailed distantly by daily oral PrEP. This inconsistency between preference and likelihood of uptake may be attributed to the fact that implants are not currently available, and/or because condoms are widely available, inexpensive, and do not require clinic visits compared to daily oral PrEP. As such, condoms may still be the best option for many adolescents, particularly as access to oral PrEP remains difficult for many. However, because adolescents may not always use condoms consistently (over half of participants reported CAS in the 6 months before the study) making PrEP easier for them to access remains a priority.

Our exploratory analyses indicated some differences in perceived adherence to and likelihood of using certain prevention methods that were associated with adolescents’ experience with sexual healthcare engagement (PrEP on demand, implants) and perceived vulnerability to HIV (bimonthly injection). We observed few other differences associated with demographic characteristics and potential indicators of PrEP need. However, these findings should be interpreted cautiously given our limited sample size for quantitative analyses, and a better understanding of predictors of acceptability and use of these different prevention options can guide providers’ recommendations for PrEP delivery methods for adolescents.

Unlike prior studies that showed a preference for injectable versus oral formulations among SGM adults (Goedel et al., 2017; Parsons et al., 2016; Patel et al., 2018), injectable PrEP was among adolescents’ least preferred methods, second only to a quarterly implant. This may be because children and adolescents are more likely to fear injections than adults, and this fear is more common when injections must be given repeatedly (McLenon & Rogers, 2019). This finding has concerning implications about the uptake of injectable PrEP among adolescents, particularly if it is not feasible to incorporate PrEP into routine vaccination schedules, as with HPV. Similarly, preferences for the quarterly implant may suggest frequency of clinic visits and insertion/removal procedures may be a significant deterrent to its use. That said, perspectives from our three transgender participants suggest that their peers’ experiences taking injectable gender affirming hormones may make injectable PrEP more acceptable, which is consistent with research on adults (Rael et al., accepted for publication).

Barriers largely were similar across methods, and responses to survey and focus group questions echoed well-documented structural obstacles to daily oral PrEP among adults (e.g., access, anticipated costs; Bauermeister et al., 2013) Yet major barriers that were distinct from the literature on adults reflected participants’ developmental context. Parents were reported to play a significant role in adolescents’ ability to access health services and insurance, and ultimately were seen as a major barrier to taking PrEP regardless of delivery method. As observed in prior work with SGM adolescents (Flores, Docherty, Relf, McKinney, & Barroso, 2019; Fuzzell, Fedesco, Alexander, Fortenberry, & Shields, 2016; Macapagal, Coventry, Arbeit, Fisher, & Mustanski, 2017), youth were reluctant to discuss sexual health and HIV prevention with parents and physicians, particularly if they were perceived to be unaccepting, conservative, or religious. The limited research on parents’ perspectives on adolescent PrEP use suggests that parents recognize its utility but have mixed feelings about their own children using it (Mustanski et al., 2018).

Parents also factored into youth’s perspectives on accessing PrEP-related care. Although our educational videos indicated that costs of PrEP maintenance would likely be covered by insurance or medication assistance plans, youth expressed concerns that the medication, clinic visits, and procedures would appear on their explanation of benefits, which then would be seen by their parents. Youth made few comments about medication assistance programs, and it is possible that they were simply unfamiliar with how such programs may work or assumed they would need their parents’ permission to access them. Additionally, although mature minor laws permit adolescents in every U.S. state to self-consent to HIV and STI testing and treatment (Guttmacher Institute, 2019), some youth expressed the belief that they could not go to the doctor for any reason without parental permission indicating they may have been unaware of these laws. That said, at the time this study was conducted, only 16 states’ laws explicitly permitted minor adolescents to access HIV preventive services such as PrEP without parental consent (Centers for Disease Control and Prevention, 2018) which would have been an additional barrier to accessing PrEP even if youth knew about their sexual health rights. As such, educating parents about PrEP and encourage them to have affirming discussions about sexual health with their children, particularly if they identify as a sexual or gender minority, may also increase PrEP uptake in adolescents at risk. Moreover, as state mature minor policies that explicitly include HIV preventive services may make providers feel more comfortable prescribing PrEP to adolescents, advocates can encourage state lawmakers to introduce bills expanding such policies to improve access.

Adolescents offered several suggestions that they believed would increase acceptability and accessibility of the different PrEP delivery methods among younger users. Most ideas pertained to the delivery method or dosing strategy. For instance, youth proposed smaller and longer-lasting implants, which are currently in development (Matthews et al., 2019); however, other suggestions such as self-administration of PrEP injections are not feasible at this time. To improve PrEP accessibility regardless of delivery method, youth remarked that receiving PrEP by mail could be more discreet and save trips to the pharmacy. Indeed, several companies currently provide this service in the U.S., however, evidence of lab work is still required, which may be difficult for adolescents to access without parental involvement. One participant suggested making PrEP and the lab work associated with its maintenance accessible at school-based health centers. As such clinics are shown to increase access to sexual and reproductive health services, including HIV and STI testing (Boonstra, 2015), this may be a promising approach to increase adolescent PrEP uptake. Relatedly, the state of California passed a law to allow pharmacists to dispense PrEP without a prescription (“Sb-159 hiv: Preexposure and postexposure prophylaxis,” 2019), which may increase accessibility for adolescents who feel more comfortable visiting a retail pharmacy than a doctor’s office.

Limitations

Although this study adds to our understanding of perspectives on PrEP among SGM adolescents assigned male at birth, there were several limitations. The sample predominantly consisted of participants who endorsed SGM-relevant interests on their social media profiles, and thus may not be representative of all SGM adolescents in the U.S.; many SGM adolescents may not publically like or follow SGM content online due to concerns about being outed. Although Black and transfeminine youth are overrepresented in new HIV diagnoses (Centers for Disease Control and Prevention, 2019; Reisner et al., 2017), they and other gender minority adolescents were not well-represented in our study, and future research should identify whether these groups experience distinct barriers or facilitators to or have differing preferences for these emerging prevention methods than what was described here. Most participants were out to their parents, had health insurance, had accessed healthcare in the past year, and reported moderate levels of HIV risk behavior; youth in different circumstances may have different preferences or concerns about these methods. That said, it is striking that youth who reported structural characteristics often associated with higher PrEP uptake in adults still perceived substantial barriers to its use.

Most participants were classified as living in urban areas and not candidates for PrEP based on the metrics we used (Centers for Disease Control and Prevention, 2018; Rural Health Research Center, 2014). However, RUCA codes are based on population density and daily commuting, which may not be an accurate indicator of adolescents’ actual experiences with or perceived ability to access healthcare (Hall, Kaufman, & Ricketts, 2006; Rural Health Research Center, 2014). In addition, some evidence suggests current PrEP guidelines and screening tools lack sensitivity and fail to capture certain high-risk populations, including youth, and that different or expanded criteria may be needed for these groups (Lancki, Almirol, Alon, McNulty, & Schneider, 2018). Finally, despite being in a focus group, participants infrequently interacted with each other, and it was sometimes difficult to obtain responses to probes and clarification questions from youth. The asynchronous nature of the focus groups and weeklong duration of study participation may have yielded somewhat less rich responses than a face-to-face or synchronous group. Nevertheless, the online focus group format permitted adolescents to participate when it was convenient for them, reduced barriers to study participation by not requiring in-person visits, and enabled us to sample youth from across the country, including those from the Southern U.S., which is disproportionately affected by HIV (Centers for Disease Control and Prevention, 2019).

Conclusion

This is the first published study to examine SGM adolescents’ perspectives on PrEP on demand and long-acting implants, and one of the few studies to explore their views on injectable PrEP (Biello et al., 2018; Fisher et al., 2017; Fisher et al., 2018). Overall, youth had a strong preference for year-long implants over injectable formulations, and factors such as convenience, duration, and ease of access appeared to play an important role in their decisions. Although results from new implant trials appear promising (Matthews et al., 2019), it will likely be years before they are available for adolescent use. While they are still in development, we have provided important information to make them more acceptable to young people. In the interim, it is critical for healthcare providers, policymakers, and public health practitioners to make concerted efforts to decrease barriers to oral PrEP uptake, and for scientists and other stakeholders to use our findings to improve acceptability of injectable PrEP among the youngest groups at risk for HIV.