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Knowledge and Attitudes About Pre-Exposure Prophylaxis Among Young Adults Experiencing Homelessness in Seven U.S. Cities
ARTICLE IN PRESS Journal of Adolescent Health 000 (2018) 1 7
www.jahonline.org Original article
Knowledge and Attitudes about Pre-Exposure Prophylaxis among Young Adults Experiencing Homelessness in Seven U.S. Cities D1X XDiane Santa Maria, D2X XDrPH.a,*, D3X XCharlene A. Flash, D4X XM.D., M.P.H.b, D5X XSarah Narendorf, D6X XPh.Dc, D7X XAnamika Barman-Adhikari, D8X XPh.D.d, D9X XRobin Petering, D10X XPh.D.e, D1X XHsun-Ta Hsu, D12X XPh.D.f, D13X XJama Shelton, D14X XPh.D.g, D15X XKimberly Bender, D16X XPh.D.d, and D17X XKristin Ferguson, D18X XPh.D.h a
Department of Nursing Systems, Cizik School of Nursing, The University of Texas Health Science Center at Houston, Houston, Texas Department of Medicine, Division of Infectious Disease, Baylor College of Medicine and Legacy Community Health, Houston, Texas Graduate College of Social Work, University of Houston, Houston, Texas d Graduate School of Social Work, University of Denver, Denver, Colorado e Suzanne Dworak-Peck School of Social Work, University of Southern California, Los Angeles, California f School of Social Work, University of Missouri, Columbia, Missouri g Silberman School of Social Work, at Hunter College, New York, New York h School of Social Work, Arizona State University, Phoenix, Arizona b c
Article History: Received March 22, 2018; Accepted June 22, 2018 Keywords: Homeless youth; Young adults; HIV; Prevention; Pre-exposure prophylaxis (PrEP)
A B S T R A C T
Purpose: Evidence suggests that young adults experiencing homelessness (YEH) are at elevated risk of HIV compared to housed youth. Given the limited research on pre-exposure prophylaxis (PrEP) awareness among YEH, this study examined their PrEP knowledge and attitudes. Methods: Data from a cross-sectional survey among YEH (ages 18 26) (n = 1,427) in seven U.S. cities were used to assess their knowledge and attitudes regarding PrEP to inform HIV prevention efforts. Results: Participants were primarily male youth of color. The mean age was 20.9 years. While 66% felt at risk for HIV, only 14% strongly agreed that they try to protect themselves from getting infected with HIV. Most (84%) were eligible for PrEP based on risk, yet only 29% had knowledge of PrEP. Despite this, 59% reported they were likely/extremely likely to take PrEP. Access to free PrEP (55%), HIV testing (72%), healthcare (68%), and one-on-one (62%), and text messaging support (57%) were rated as very/extremely important for PrEP uptake and adherence. Conclusions: The results of this study suggest missed opportunities to prevent new HIV infections among YEH. Efforts to increase PrEP uptake among this population should consider provider- and system-level interventions to increase PrEP awareness, decrease PrEP-associated healthcare costs, improve access to PrEP providers, and provide in-person and text messaging support. © 2018 Society for Adolescent Health and Medicine. All rights reserved.
In 2016, 21% of new HIV cases in the United States (U.S.) were among 13 24-year-old youth [1]. Among those experiencing homelessness, HIV seroprevalence is estimated to be 3 10 times higher than that among housed populations [2 4], with as much as 21% of the homeless population being HIV positive [5,6]. While there is limited
IMPLICATIONS AND CONTRIBUTION
Despite evidence that YEH are more likely to get HIV than their housed peers, PrEP awareness is low. However, once informed, the participants in this study showed interest in PrEP and endorsed several factors that can support PrEP uptake and adherence.
data on the prevalence of HIV among YEH, available data suggests a prevalence between 2% and 12% [7,8], suggesting this population is up to 12 times more likely to have HIV than their housed peers [9]. Young adults experiencing homelessness (YEH) are often members of high HIV risk groups including youth of color;
* Address correspondence to: Diane Santa Maria, DrPH, Department of Nursing Systems, Cizik School of Nursing, The University of Texas Health Science Center at Houston, 6901 Bertner Ave., Ste. 591, Houston, TX 77030. E-mail address: [email protected] (D. Santa Maria). 1054-139X/© 2018 Society for Adolescent Health and Medicine. All rights reserved. https://doi.org/10.1016/j.jadohealth.2018.06.023
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heterosexually active black young women; young men who have sex with men (MSM); young adults who inject drugs, trade sex, or are sexually exploited; and transgender young women who have sex with men [10]. Youth of color and lesbian, gay, bisexual, transgender, and questioning (LGBTQ) youth disproportionately experience homelessness [11]. If current rates of new HIV diagnoses continue, the Centers for Disease Control and Prevention estimates that about one in two black MSM and one in four Latino MSM in the U.S. will be diagnosed with HIV during their lifetime [10]. Research shows important age, gender, and racial/ethnic disparities in the awareness and uptake of HIV pre-exposure prophylaxis (PrEP), despite its efficacy in preventing HIV [12]. PrEP uptake has been slow among youth and even more so in youth of color. For example, in one study young adults under 25 years old accounted for only 7.6% of PrEP prescriptions [13] despite comprising 40% of new HIV infections [14]. Young black men in the U.S. were least likely to be prescribed PrEP, with significantly lower rates than white women or black men of all ages; only 11.5% were black [13]. Another study found low PrEP uptake among young black MSM; only 8% were using PrEP, despite 67% reporting risk behavior such as condomless anal sex [15]. Several contributing factors increase the burden of HIV among YEH, including high rates of sexually transmitted infections (STIs) with prevalence rates of 6% 32% [7,16,17]. YEH engage in high HIVrisk behaviors, including injection drug use; needle sharing; condomless sex; and trading sex for money, drugs, or shelter [4]. The elevated HIV risk may also result from relatively small, high-risk social networks [18] and time on the street that has been found to negatively impact motivation to reduce HIV risk behaviors [19]. Compounding disparities in PrEP awareness and uptake is housing instability. Although YEH are at elevated risk for HIV, they also have some of the lowest rates of access to HIV prevention, particularly PrEP. YEH face multiple barriers (e.g., loss of identification, lack of transportation, disconnection from healthcare) that limit their awareness of and access to PrEP [20,21]. However, little is known about levels of PrEP awareness among YEH across the U.S. Additionally, scant literature exists regarding YEHs’ eligibility to receive PrEP, interest in taking PrEP, and perceptions of both HIV risk and supports needed to enhance the uptake and adherence to PrEP. Therefore, a team of researchers conducted this study among YEH from seven large urban cities across the U.S. Methods Study design Interdisciplinary researchers from around the U.S. developed a national research collaborative (REALYST; www.realyst.org) to examine risk and resilience characteristics of YEH across seven cities in 2016 2017. The collaborative developed a standardized study protocol and self-administered survey collected using tablets. Each study site was independently funded. Research settings The locations (Denver, Houston, Los Angeles, New York City, Phoenix, San Jose, and St. Louis) were chosen using U.S. Census Bureau regions and divisions to include representation from the western, mid-western, southern, and northeastern regions. Using a cross-sectional study design, researchers at each university collaborated with local YEH service providers. Participating agencies offered homeless, runaway, and at-risk young people a
comprehensive system of care, including street outreach, drop-in services, emergency shelter, and housing. The institutional review boards at each university approved the study procedures. Sample and recruitment A standardized protocol for recruiting and screening potential participants was used across sites. Using purposive sampling, researchers and trained research assistants in each city recruited approximately 200 unique English-speaking YEH (ages 18 26) from those seeking services at host agencies. Researchers intentionally sampled from different agencies in each community to capture the variation in the experiences and demographics of young people accessing different types of homeless services. YEH accessing services during the data collection events were asked to participate in an eligibility screener. The screener determined age and homelessness status, defined as spending the prior night in a shelter, an apartment provided through a temporary housing voucher, on the streets, in a location not meant for human habitation, or temporarily with friends, acquaintances, or family where they could not stay for more than 30 days. For eligible participants, the researcher team obtained verbal informed consent. Interested individuals indicated their willingness to participate by clicking a box on a study tablet and beginning the survey. Data collection Once consented, an anonymous identification code was generated for each participant by using their mother’s first initial, the number of older brothers, month they were born, and middle initial. This procedure enabled us to search for and remove duplicates across data collection sites and cities. No duplicates were detected across cities. Next, the participant completed the Rapid Estimate of Adult Literacy in Medicine short form (REALM-SF) screener [22], which was modified to reflect words that would appear in the survey (e.g., transience, resilience, cocaine, pregnancy, satisfied, temporary, identity, hepatitis, victimization). If a participant scored 1 3 (of 9) on the REALM-SF, they were encouraged to have the survey read aloud by the researcher in a private setting. Those with scores higher than three completed the survey independently on the tablet. Study staff were available to assist participants as needed. However, the survey was designed to be self-administered to reduce the social desirability bias of face-to-face disclosure of sensitive information [23]. The survey took about 50 minutes to complete. Participants were given a $10 $20 gift card depending on city for a local store or restaurant after completing the survey. Measures The survey included questions about age, gender identity, race/ ethnicity, education, and sexual orientation. It inquired about YEHs’ duration of homelessness (dichotomized as <2 years or 2 years of accumulated lifetime homelessness), age at the onset of homelessness, and shelter status (categorized as sheltered, living on the streets, or unstably housed). Participants were asked about their sexual risk behaviors (e.g., number of sexual partners, concurrent partners, condomless sex), HIV status, HIV testing, perceived HIV risk, knowledge of and interest in PrEP. They also were asked to endorse supportive services they felt would enhance their uptake of and adherence to PrEP. Past or current PrEP use was not included in the survey. Perceived HIV risk. Perceived HIV risk was assessed using a fouritem measure [24]. Scores were summed, with higher scores
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indicating greater HIV risk perception. Items asked participants to rate, on a four-point scale, how much they agreed or disagreed with statements such as “It would be easy for me to get infected with HIV/AIDS.” This measure was not assessed in all locations; therefore, a subgroup analysis was performed with data from Los Angeles, New York City, Phoenix, and San Jose. The survey provided some information about PrEP before inquiring about perceived PrEP support services using this statement: “There is a medication called Truvada or PrEP that can help prevent HIV. This is a daily pill taken by mouth given to people at risk for HIV to help protect them from getting HIV.” Likelihood of PrEP eligibility. We assessed participants’ likelihood of being eligible for PrEP using a variable derived from items measuring drug use and sexual risk. This dichotomous variable was created to capture the potential clinical PrEP eligibility of participants based on the Clinical Guidelines issued by the Centers for Disease Control and Prevention (2014). While the questions in the survey did not match the guidelines exactly, there was sufficient overlap to develop a reasonable measure of participants’ likelihood of PrEP eligibility. A participant was coded as PrEP eligible if s/he indicated that they had 2 sexual partners during the past 3 months; sex (e.g., oral, vaginal, or anal) with more than one partner in 1 week during the past 3 months; condomless sex at their most recent sexual encounter or in the past 3 months; ever traded sex for money, drugs, a place to stay, food/meals, or anything else; were ever forced to exchange sex; had an STI in the past 6 months; injected drugs in the past 30 days; or identified as MSM. These criteria are appropriate for YEH due to both their high HIV prevalence and HIV risk behaviors. These criteria are not intended to discern those at highest risk for HIV but rather to identify youth who should seek further clinical assessment of PrEP eligibility. PrEP knowledge. We assessed participants’ knowledge about PrEP using a continuous variable derived from a five-point Likert scale that asked them to rate how much they knew about “PrEP a medication called Truvada that a person can take to help prevent getting HIV.” Response options ranged from “I have never heard about it;” “I have heard of it but don’t know what it is;” “I know a little about it;” “I know a lot about it;” and “I have talked to my doctor about it.” PrEP interest. We measured participants’ interest in receiving PrEP by asking youth, “If eligible for PrEP, how interested would you be in taking a medication that could drastically reduce your chances of getting HIV?” Answers ranged, on a five-point Likert scale, from not interested to very interested. Similarly, participants were asked, “How likely would you be to take a pill each day if you knew that it could greatly reduce your chance of getting HIV?”; those answers ranged, on a five-point Likert scale, from extremely unlikely to extremely likely. Finally, the participants were asked, “If your doctor recommended PrEP for you, how likely would you be to use it to prevent HIV infection?” These items used a fivepoint scale Likert scale ranging from extremely unlikely to extremely likely and were adapted from an existing scale with good reliability (a = 0.81) [25]. PrEP supportive services. We assessed the need for support using an existing scale [25]. Participants answered the following question: “If you were interested and eligible to take PrEP, how important would the following be to using PrEP?” The participant rated the importance of each item (e.g., free HIV/STI testing, counseling services, text supports); items were rated from 1 5 with one being not important at all and five being extremely important.
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Data analysis Frequencies and percentages of demographics and risk behaviors were examined. Potential correlates of the likelihood of PrEP eligibility were explored using bivariate logistic regressions conducted to assess for statistically significant differences. Comparisons of categorical measures were conducted using Odds Ratios (OR). Statistical significance was set at p 0.05. Results Sample demographics Participants (n = 1,427) were primarily (81%) young adults of color (37% black, 17% Hispanic, 16% mixed, 11% other) and cisgender (58% cisgender male, 34% cisgender female). Youth who identified at transgender (5%) were male-to-female (n = 40) and femaleto-male (n = 28). Almost one third (29%) were LGBQ, and the mean age was 20.9 years (standard deviation = 2.09) (Table 1). Most participants (60%) first experienced homelessness after turning 18 years old, had been homeless for less than 2 years (70%), and had primarily stayed in a shelter (49%) or outside (33%) the night before participating in the survey. HIV status and risk behaviors Overall, high levels of HIV risk behaviors were reported (Table 1). In the total sample, 70% reported condomless sex either at last sex or in the past 3 months, 44% had used substances during their most recent sexual encounter, 25% reported concurrent sexual partners in the past 3 months, 23% had ever traded sex, and 9% had injected drugs in the past 30 days. The median number of lifetime sexual partners among the entire sample was eight. Roughly 48.2% of the respondents had more than eight lifetime sex partners. HIV testing rates were high with 81.9% of youth indicating ever being tested for HIV. However, only 51.6% had been tested in the past 3 months. In the total sample, 4.4% of youth indicated that they had tested positive for HIV. Of youth who self-reported being HIV positive, 7/51 identified as a gay male, 19/51 as sexual minority, 7/51 as gender minority, and 13/51 reported injecting drugs in the last 30 days. Differences in HIV risk behaviors were noted by gender identity, sexual orientation, and geographic location. The proportion of cisgender females reporting inconsistent condom use (74%), trading sex (30%), and STIs (15%), was higher than cisgender males. Compared with cisgender females, cisgender males had higher rates of having concurrent sexual partners (26%) and using substances during the most recent sexual encounter (50%). The highest rates of concurrent sexual partners (34%) and trading sex (44%) were among those who identified as transgender or queer. The prevalence of all HIV risk behaviors was higher in LGBTQ participants than cisgender participants. Perceived HIV risk In the subsample of youth asked about perceived HIV risk, many participants felt it would be easy for them to contract HIV (61%), believed their behavior puts them at risk for HIV (66%), and worried about getting HIV (47%) (Table 2). Nonetheless, only 14% strongly agreed that they try to protect themselves from getting infected with HIV.
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Table 1 PrEP eligibility by demographic characteristics Characteristic n (%)
> 1 Sexual partner in past 3 months
Concurrent sexual partners
Condomless sex
Trade sex
IV Drug use
Potential PrEP eligibility
132 (11.6)
67 (4.7)
551 (67.6)
274 (25.0)
798 (70.0)
263 (23.3)
121 (8.7)
1,200 (84.3)
914 (64.2) 509 (35.8)
76 (10.6) 56 (13.3)
33 (3.6) 34 (6.7)
275 (52.8) 163 (55.6)
170 (23.9) 103 (27.0)
504 (70.2) 294 (70.3)
151 (21.0) 126 (30.1)
69 (7.7) 52 (10.3)
762 (83.4) 438 (86.1)
270 (19.0) 531 (37.3) 247 (17.3) 145 (10.2) 231 (16.2)
24 (11.8) 55 (12.4) 28 (14.8) 10 (8.9) 16 (8.3)
16 (5.9) 20 (3.8) 11 (4.5) 8 (5.5) 12 (5.2)
94 (59.1) 148 (49.3) 76 (55.9) 38 (50.7) 84 (57.5)
54 (27.7) 104 (25.8) 43 (21.9) 23 (19.5) 50 (27.3)
167 (72.3) 290 (68.1) 131 (71.9) 70 (68.6) 141 (71.9)
54 (23.4) 92 (21.6) 40 (21.7) 29 (28.4) 62 (31.8)
35 (13.1) 36 (6.9) 18 (7.5) 14 (9.7) 18 (8.0)
229 (84.8) 447 (84.2) 207 (83.8) 113 (77.9) 206 (89.2)
833 (58.5) 483 (33.9) 107 (7.5)
59 (9.4) 64 (15.2) 10 (11.2)
51 (6.1) 1 (0.2) 15 (14.2)
253 (57.6) 140 (45.2) 46 (69.7)
162 (26.2) 81 (20.9) 30 (34.1)
437 (67.4) 299 (73.8) 64 (75.3)
119 (18.4) 121 (29.9) 37 (43.5)
70 (8.6) 41 (8.6) 9 (8.7)
679 (81.5) 431 (89.2) 91 (85.1)
408 (28.6) 1017 (71.4)
51 (14.5) 82 (10.4)
67 (16.6)
152 (57.6) 287 (52.1)
97 (29.7) 177 (23.1)
250 (72.9) 549 (69.1)
137 (39.8) 139 (17.5)
41 (10.2) 79 (7.9)
364 (89.2) 838 (82.4)
436 (30.7) 985 (69.3)
43 (11.6) 90 (12.3)
18 (4.1) 49 (5.0)
155 (59.2) 284 (51.4)
103 (30.8) 170 (22.4)
271 (75.1) 527 (67.9)
120 (33.3) 157 (20.2)
32 (7.5) 89 (9.2)
380 (87.2) 821 (83.4)
573 (40.4) 845 (59.6)
55 (12.0) 78 (11.5)
23 (4.0) 44 (5.2)
185 (53.5) 255 (54.5)
126 (28.06) 148 (23.09)
333 (71.0) 465 (69.7)
141 (30.1) 135 (20.2)
58 (10.3) 63 (7.6)
495 (86.4) 704 (83.3)
263 (18.5) 692 (48.7) 465 (32.7)
33 (14.9) 50 (9.0) 50 (14.1)
17 (6.5) 32 (4.6) 18 (3.9)
96 (54.9) 181 (48.4) 163 (62.0)
62 (27.56) 106 (20.95) 106 (29.53)
155 (72.8) 371 (66.9) 270 (73.8)
61 (28.6) 129 (23.2) 87 (23.8)
19 (7.3) 47 (6.9) 55 (12.1)
227 (86.3) 577 (83.2) 394 (84.7)
215 (15.1) 208 (14.6) 203 (14.2) 208 (14.6) 197 (13.8) 198 (13.9) 197 (13.8)
18 (10.0) 16 (10.1) 20 (11.7) 20 (13.2) 21 (14.0) 15 (8.3) 23 (15.9)
23 (10.7) 8 (3.8) 6 (3.0) 10 (4.8) 3 (1.5) 9 (4.5) 8 (4.1)
78 (59.5) 61 (52.1) 53 (50.0) 59 (50.4) 62 (49.6) 56 (50.9) 71 (64.5)
45 (27.44) 34 (22.37) 32 (21.33) 35 (21.74) 39 (24.68) 34 (21.25) 55 (36.67)
130 (71.0) 129 (74.1) 107 (67.3) 120 (74.1) 113 (68.9) 93 (64.1) 108 (71.1)
59 (32.4) 23 (13.2) 43 (27.0) 44 (27.2) 28 (17.2) 37 (25.3) 43 (28.1)
16 (7.6) 20 (9.7) 15 (7.5) 20 (9.8) 15 (7.8) 19 (9.8) 16 (8.4)
188 (87.4) 177 (85.1) 176 (86.7) 174 (83.7) 163 (82.7) 177 (89.4) 148 (75.1)
STI = Sexually transmitted infection; LGBQ = Lesbian, gay, bisexual, or questioning
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MSM
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Total sample Age 18 21 years 22 26 years Race/Ethnicity White Black Latino(a) Other Mixed Gender identity Cisgender male Cisgender female Transgender/Queer Sexual orientation LGBQ Heterosexual Length of homelessness >2 years < 2 years Age at first homeless <18 18 Shelter status Couch surfing Shelter Outside City Los Angeles Denver Houston Phoenix St. Louis New York City San Jose
Ever had STI
Total sample
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5
Table 2 Subanalysis of perceived HIV riska
It would be easy for me to get infected with HIV or AIDS My behavior puts me at risk for HIV or AIDS I worry about getting infected with HIV or AIDS I try to protect myself from being infected with HIV or AIDS
Strongly disagree n (%)
Somewhat disagree n (%)
Somewhat agree n (%)
Strongly agree n (%)
78 (11.3) 55 (8.0) 149 (21.5) 425 (61.4)
108 (15.6) 85 (12.3) 76 (11.0) 49 (7.1)
83 (12.0) 97 (14.0) 141 (20.3) 123 (17.8)
424 (61.2) 454 (65.7) 328 (47.3) 95 (13.7)
a
Includes youth from Los Angeles, Phoenix, New York City, and San Jose
PrEP eligibility Most participants (84%) were found to be eligible for PrEP using our proxy measure of PrEP eligibility (Table 1). A bivariate analysis of PrEP eligibility by demographic characteristics revealed several differences: PrEP eligibility significantly differed by gender identity, sexual orientation, and location. Specifically, cisgender females were significantly more likely to be PrEP eligible (OR = 1.9, CI = 1.3 2.6, p < .01) than cisgender males. LGBQ participants (OR = 1.8, CI = 1.2 2.5; p < .01) were significantly more likely to be PrEP eligible than heterosexual participants. Youth from New York City (OR = 1.7, CI = 1.0 2.7, p < .01) were significantly more likely to be PrEP eligible when compared to youth from other cities. Youth from San Jose (OR = 0.5, CI = 0.3 0.7, p < .001) were significantly less likely to be PrEP eligible when compared to youth from other cities. There were no significant differences in PrEP eligibility by age, race/ethnicity, length of homelessness, age at first homelessness, or shelter status. PrEP knowledge, interest, and endorsed support Only 29% of youth had any knowledge of PrEP and only 4% of youth had talked with a doctor about PrEP (Table 3). Knowledge about PrEP differed significantly by gender identity and study site; transgender participants were more likely to have heard of PrEP than cisgender males (OR = 4.3, CI = 2.8 6.5, p < .001) or females (OR = 3.5, CI = 2.2 5.4, p < .001) and the highest rates of PrEP knowledge were among participants in Los Angeles (OR = 2.6, CI = 1.9 3.5, p < .001) and New York (OR = 2.3, CI = 1.7 3.1, p < .001). Despite having little or no knowledge, 59% reported they were likely or extremely likely to take PrEP if recommended by their doctor. Transgender participants also reported significantly more interest in PrEP than cisgender males (OR = 2.1, CI = 1.3 3.5, p < .01), though 43% of the total sample were moderately to very interested. No significant differences by sexual orientation were found. Access to free HIV testing (72%), healthcare (68%), one-onone counseling on PrEP use (62%), text messaging support (57%), and free PrEP medication (55%) were all rated as very important or extremely important for using PrEP among participants (Figure 1). Discussion To our knowledge, this is the first study using a large, geographically diverse sample of YEH, primarily youth of color, to
assess their perceived HIV risk; PrEP eligibility, awareness, and interest; and suggested supportive services to enhance PrEP use. The results inform HIV prevalence data among YEH, albeit using self-report and suggests key opportunities to prevent new HIV infections among YEH. Despite the high rate of potentially PrEP eligible YEH in the entire sample (84%), only 66% of the subsample asked thought they were at risk for HIV, and only 14% reported that they were trying to protect themselves from becoming infected with HIV. While only a subsample of youth were asked about perceived HIV risk, this disconnect between actual and perceived risk and between HIV risk and protective behaviors has been described in other populations in the U.S. [26]. In this study population, low perceived HIV risk may have been exacerbated by adolescent brain development [27,28] and negatively impacted by high levels of trauma experienced prior to and during homelessness [29,30]. Further research is needed to inform effective strategies to enhance PrEP awareness and uptake by addressing developmental stage and the impact of trauma on risk behavior. Further, risk-group specific investigation of drivers of low HIV risk perception and low uptake of protective strategies is critical particularly among groups with high HIV burden such as young MSM, transgender women, and black cisgender women. Despite the high HIV risk in this population, PrEP knowledge was low, especially in the mid-west and southern regions. This is particularly concerning given that the southern U.S. is the region that experiences the greatest burden of HIV diagnoses [31]. However, once informed, participants showed interest in PrEP. Unfortunately, YEH often lack access to basic sexual health education and preventative healthcare including PrEP, further impeding HIV prevention efforts [20]. Incorporating PrEP into accessible sexual health education is needed to increase knowledge and awareness of PrEP. Our findings mirror recommendations for PrEP supports, including free HIV testing, access to point-of-contact healthcare, sexual health counseling, and text-based and individualized supportive services [25,32,33]. Young adults experience unique barriers to accessing PrEP that should to be considered when designing HIV prevention programs [32,34]. These barriers may also drive low PrEP adherence, an upstream consideration essential to the HIV prevention continuum. Existing PrEP guidelines primarily focus on clinical monitoring protocols and do not provide guidance on how to address the impact of mental health and stigma on the willingness or ability of at-risk populations, such as YEH, to access, initiate, and adhere to PrEP.
Table 3 PrEP knowledge, interest, and likelihood to uptake
PrEP knowledge PrEP interest Likelihood to take PrEP PrEP uptake if prescribed
PrEP barriers (frequency, %)
PrEP facilitators (frequency, %)
No knowledge (989, 70.9) No/low interest (583, 41.8) Unlikely (414, 29.7) Unlikely (321, 23.1)
Talked to a HCP about PrEP (59, 4.2) Moderate/Very interested (583, 41.8) Likely (722, 50.9) Likely (813, 58.5)
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Figure 1. Percentage of participants who endorsed PrEP uptake and adherence supportive services.
Furthermore, young adults at highest risk for HIV are disproportionately impacted by factors that limit their access to PrEP, particularly those related to homelessness; lack of identification and health insurance, low healthcare utilization, lack of jobs and stable income, transportation needs, and unstable housing [15,35,36]. Comprehensive PrEP guidelines for YEH should also include strategies to combat the layered disparities related to HIV and homelessness within youth-service organizations, communities, and the healthcare system to engage youth in the full continuum of HIV prevention, care, and monitoring services [32]. Finally, further research on disclosure and layered stigma among YEH is needed. Provider- and system-level factors may be contributing to the delay in PrEP rollout to YEH [37]. While the integration of PrEP into routine care will expand reach [37], healthcare providers often do not appropriately recommend its use [38]. Despite compelling efficacy data and comprehensive clinical guidelines, providers working with at-risk young adults report having limited PrEP knowledge, familiarity with PrEP clinical guidelines, and willingness to prescribe PrEP [39]. In addition, the Food and Drug Administration has recently approved PrEP for use among youth under 18 years of age. Additional research focused on YEH under 18 is needed. In addition, pediatric and adolescent provider skill building and practice level changes are needed to increase PrEP access for at-risk minors [33]. Other possible barriers to dissemination among youth and young adults include lack of health insurance, medication, laboratory tests, and office visit costs; need for supportive services such as counseling and text-based medication and risk-management services; and a lack of targeted, personalized HIV prevention programs that address the challenges faced by YEH. This study adds to the literature on HIV prevention among YEH; however, several limitations should be noted. This was a cross-sectional study, and associations rather than causation can be drawn
from the data. Moreover, the sample was primarily recruited from homeless youth service organizations versus the street. The sample did not include youth under 18 years of age and therefore cannot address PrEP eligibility, knowledge, and attitudes among minors experiencing homelessness. As well, this sample does not include YEH from the southeastern U.S. Finally, the measure for PrEP eligibility did not match the Centers for Disease Control and Prevention guidelines exactly, and therefore can only be interpreted as an approximation of potential PrEP eligibility among YEH. Additional research is needed to determine effective strategies to support PrEP uptake in YEH to inform the dissemination of HIV prevention programs. PrEP awareness and uptake may be improved by providing youth-friendly settings that incorporate technology-assisted support, individualized case management, and increased frequency of clinic visits [35]. Access to free medication, monitoring, testing, and counseling is important to supporting PrEP uptake. High-yield interventions will reduce system and individual-level barriers to accessing healthcare providers who can prescribe and manage PrEP. Efforts also should target healthcare providers and homeless healthcare systems to increase providers’ PrEP knowledge and skills, decrease PrEP-associated healthcare costs, and improve access to PrEP. Research is also needed to explore actual uptake versus interest in uptake. Youth often demonstrate low PrEP adherence [14]. This may be even more exaggerated among YEH, particularly among those who report low perceived HIV risk. Despite HIV vulnerability, only about half of youth reported they would likely take a pill each day if they knew it could greatly reduce their chance of getting HIV. Further, research on the barriers to and facilitators of PrEP use and adherence is needed for developing and testing of evidence-based PrEP support services among YEH and minors experiencing homelessness.
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Acknowledgments We thank the multiple REALYST.org community partners and young people who collaborated and participated in this study.
Funding Sources This research received support from the Greater Houston Community Foundation Funders Together to End Homelessness (D.S.M. and S.N.), the National Institute of Mental Health K23MH10935802 (C.F.), F31MH108446 (R.P.), and Arizona State University Institute for Social Science Research (K.F.).
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[17] Ober AJ, et al. If you provide the test, they will take it: factors associated with HIV/STI testing in a representative sample of homeless youth in Los Angeles. AIDS Educ Prev 2012;24:350–62. [18] Rice E, et al. Position-specific HIV risk in a large network of homeless youths. Am J Public Health 2012;102:141–7. [19] Collins J, Slesnick N. Factors associated with motivation to change HIV risk and substance use behaviors among homeless youth. J Soc Work Pract Addict 2011;11:163–80. [20] Pedersen ER, Tucker JS, Kovalchik SA. Facilitators and barriers of drop-in center use among homeless youth. J Adolesc Health 2016;59:144–53. [21] Kryda AD, Compton MT. Mistrust of outreach workers and lack of confidence in available services among individuals who are chronically street homeless. Community Ment Health J 2009;45:144–50. [22] Murphy PW, et al. Rapid estimate of adult literacy in medicine (REALM): a quick reading test for patients. J Read 1993;37:124–30. [23] Phillips AE, et al. A systematic review and meta-analysis of quantitative interviewing tools to investigate self-reported HIV and STI associated behaviours in low- and middle-income countries. Int J Epidemiol 2010;39:1541–55. [24] Napper LE, Fisher DG, Reynolds GL. Development of the perceived risk of HIV scale. AIDS Behav 2012;16:1075–83. [25] Golub SA, et al. From efficacy to effectiveness: facilitators and barriers to PrEP acceptability and motivations for adherence among MSM and transgender women in New York City. AIDS Patient Care STDs 2013;27:248–54. [26] Khawcharoenporn T, Kendrick S, Smith K. HIV risk perception and preexposure prophylaxis interest among a heterosexual population visiting a sexually transmitted infection clinic. AIDS Patient Care STDs 2012;26:222–33. [27] Steinberg L. Risk taking in adolescence: new perspectives from brain and behavioral science. Curr Dir Psychol Sci 2007;16:55–9. [28] Giedd JN. Structural magnetic resonance imaging of the adolescent brain. Ann NY Acad Sci 2004;1021:77–85. [29] Heerde JA, Scholes-Balog KE, Hemphill SA. Associations between youth homelessness, sexual offenses, sexual victimization, and sexual risk behaviors: a systematic literature review. Arch Sex Behav 2015;44:181–212. [30] Heerde JA, Hemphill SA. Sexual risk behaviors, sexual offenses, and sexual victimization among homeless youth: a systematic review of associations with substance use. Trauma Violence Abuse 2015;17:468–89. [31] National Center for HIV/AIDS, V.H., STD, and TB PreventionDivision of HIV/AIDS Prevention, HIV in the Southern United States, C.f.D.C.a. Prevention, Editor. 2016. [32] Boyer CB, et al. Creating systems change to support goals for HIV continuum of care: the role of community coalitions to reduce structural barriers for adolescents and young adults. J HIV AIDS Soc Serv 2016;15:158–79. [33] Society for Adolescent Health and Medicine. HIV pre-exposure prophylaxis medication for adolescents and young adults: a position paper of the society for adolescent health and medicine.J Adolesc Health 2018, in press. doi: 10.1016/j.jadohealth.2018.07.021. [34] Pettifor A, et al. Preventing HIV among young people: research priorities for the future. J Acquir Immune Defic Syndr 2013;63(02):S155–60. [35] Hosek S, et al. Preventing HIV among adolescents with oral PrEP: observations and challenges in the United States and South Africa. J Int AIDS Soc 2016;19 (7Suppl 6):21107. [36] Evans YN, Handschin SM, Giesel AE. Health care utilization in homeless youth. J Community Health 2014;39:521–3. [37] Mayer KH, et al. Evolving models and ongoing challenges for HIV preexposure prophylaxis implementation in the United States. J Acquir Immune Defic Syndr 2018;77:119–27. [38] Karris MY, et al. Are we prepped for preexposure prophylaxis (PrEP)? Provider opinions on the real-world use of PrEP in the United States and Canada. Clin Infect Dis 2013;58:704–12. [39] Seidman D, et al. United States family planning providers' knowledge of and attitudes towards preexposure prophylaxis for HIV prevention: a national survey. Contraception 2016;93:463–9.
www.jahonline.org Original article
Knowledge and Attitudes about Pre-Exposure Prophylaxis among Young Adults Experiencing Homelessness in Seven U.S. Cities D1X XDiane Santa Maria, D2X XDrPH.a,*, D3X XCharlene A. Flash, D4X XM.D., M.P.H.b, D5X XSarah Narendorf, D6X XPh.Dc, D7X XAnamika Barman-Adhikari, D8X XPh.D.d, D9X XRobin Petering, D10X XPh.D.e, D1X XHsun-Ta Hsu, D12X XPh.D.f, D13X XJama Shelton, D14X XPh.D.g, D15X XKimberly Bender, D16X XPh.D.d, and D17X XKristin Ferguson, D18X XPh.D.h a
Department of Nursing Systems, Cizik School of Nursing, The University of Texas Health Science Center at Houston, Houston, Texas Department of Medicine, Division of Infectious Disease, Baylor College of Medicine and Legacy Community Health, Houston, Texas Graduate College of Social Work, University of Houston, Houston, Texas d Graduate School of Social Work, University of Denver, Denver, Colorado e Suzanne Dworak-Peck School of Social Work, University of Southern California, Los Angeles, California f School of Social Work, University of Missouri, Columbia, Missouri g Silberman School of Social Work, at Hunter College, New York, New York h School of Social Work, Arizona State University, Phoenix, Arizona b c
Article History: Received March 22, 2018; Accepted June 22, 2018 Keywords: Homeless youth; Young adults; HIV; Prevention; Pre-exposure prophylaxis (PrEP)
A B S T R A C T
Purpose: Evidence suggests that young adults experiencing homelessness (YEH) are at elevated risk of HIV compared to housed youth. Given the limited research on pre-exposure prophylaxis (PrEP) awareness among YEH, this study examined their PrEP knowledge and attitudes. Methods: Data from a cross-sectional survey among YEH (ages 18 26) (n = 1,427) in seven U.S. cities were used to assess their knowledge and attitudes regarding PrEP to inform HIV prevention efforts. Results: Participants were primarily male youth of color. The mean age was 20.9 years. While 66% felt at risk for HIV, only 14% strongly agreed that they try to protect themselves from getting infected with HIV. Most (84%) were eligible for PrEP based on risk, yet only 29% had knowledge of PrEP. Despite this, 59% reported they were likely/extremely likely to take PrEP. Access to free PrEP (55%), HIV testing (72%), healthcare (68%), and one-on-one (62%), and text messaging support (57%) were rated as very/extremely important for PrEP uptake and adherence. Conclusions: The results of this study suggest missed opportunities to prevent new HIV infections among YEH. Efforts to increase PrEP uptake among this population should consider provider- and system-level interventions to increase PrEP awareness, decrease PrEP-associated healthcare costs, improve access to PrEP providers, and provide in-person and text messaging support. © 2018 Society for Adolescent Health and Medicine. All rights reserved.
In 2016, 21% of new HIV cases in the United States (U.S.) were among 13 24-year-old youth [1]. Among those experiencing homelessness, HIV seroprevalence is estimated to be 3 10 times higher than that among housed populations [2 4], with as much as 21% of the homeless population being HIV positive [5,6]. While there is limited
IMPLICATIONS AND CONTRIBUTION
Despite evidence that YEH are more likely to get HIV than their housed peers, PrEP awareness is low. However, once informed, the participants in this study showed interest in PrEP and endorsed several factors that can support PrEP uptake and adherence.
data on the prevalence of HIV among YEH, available data suggests a prevalence between 2% and 12% [7,8], suggesting this population is up to 12 times more likely to have HIV than their housed peers [9]. Young adults experiencing homelessness (YEH) are often members of high HIV risk groups including youth of color;
* Address correspondence to: Diane Santa Maria, DrPH, Department of Nursing Systems, Cizik School of Nursing, The University of Texas Health Science Center at Houston, 6901 Bertner Ave., Ste. 591, Houston, TX 77030. E-mail address: [email protected] (D. Santa Maria). 1054-139X/© 2018 Society for Adolescent Health and Medicine. All rights reserved. https://doi.org/10.1016/j.jadohealth.2018.06.023
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heterosexually active black young women; young men who have sex with men (MSM); young adults who inject drugs, trade sex, or are sexually exploited; and transgender young women who have sex with men [10]. Youth of color and lesbian, gay, bisexual, transgender, and questioning (LGBTQ) youth disproportionately experience homelessness [11]. If current rates of new HIV diagnoses continue, the Centers for Disease Control and Prevention estimates that about one in two black MSM and one in four Latino MSM in the U.S. will be diagnosed with HIV during their lifetime [10]. Research shows important age, gender, and racial/ethnic disparities in the awareness and uptake of HIV pre-exposure prophylaxis (PrEP), despite its efficacy in preventing HIV [12]. PrEP uptake has been slow among youth and even more so in youth of color. For example, in one study young adults under 25 years old accounted for only 7.6% of PrEP prescriptions [13] despite comprising 40% of new HIV infections [14]. Young black men in the U.S. were least likely to be prescribed PrEP, with significantly lower rates than white women or black men of all ages; only 11.5% were black [13]. Another study found low PrEP uptake among young black MSM; only 8% were using PrEP, despite 67% reporting risk behavior such as condomless anal sex [15]. Several contributing factors increase the burden of HIV among YEH, including high rates of sexually transmitted infections (STIs) with prevalence rates of 6% 32% [7,16,17]. YEH engage in high HIVrisk behaviors, including injection drug use; needle sharing; condomless sex; and trading sex for money, drugs, or shelter [4]. The elevated HIV risk may also result from relatively small, high-risk social networks [18] and time on the street that has been found to negatively impact motivation to reduce HIV risk behaviors [19]. Compounding disparities in PrEP awareness and uptake is housing instability. Although YEH are at elevated risk for HIV, they also have some of the lowest rates of access to HIV prevention, particularly PrEP. YEH face multiple barriers (e.g., loss of identification, lack of transportation, disconnection from healthcare) that limit their awareness of and access to PrEP [20,21]. However, little is known about levels of PrEP awareness among YEH across the U.S. Additionally, scant literature exists regarding YEHs’ eligibility to receive PrEP, interest in taking PrEP, and perceptions of both HIV risk and supports needed to enhance the uptake and adherence to PrEP. Therefore, a team of researchers conducted this study among YEH from seven large urban cities across the U.S. Methods Study design Interdisciplinary researchers from around the U.S. developed a national research collaborative (REALYST; www.realyst.org) to examine risk and resilience characteristics of YEH across seven cities in 2016 2017. The collaborative developed a standardized study protocol and self-administered survey collected using tablets. Each study site was independently funded. Research settings The locations (Denver, Houston, Los Angeles, New York City, Phoenix, San Jose, and St. Louis) were chosen using U.S. Census Bureau regions and divisions to include representation from the western, mid-western, southern, and northeastern regions. Using a cross-sectional study design, researchers at each university collaborated with local YEH service providers. Participating agencies offered homeless, runaway, and at-risk young people a
comprehensive system of care, including street outreach, drop-in services, emergency shelter, and housing. The institutional review boards at each university approved the study procedures. Sample and recruitment A standardized protocol for recruiting and screening potential participants was used across sites. Using purposive sampling, researchers and trained research assistants in each city recruited approximately 200 unique English-speaking YEH (ages 18 26) from those seeking services at host agencies. Researchers intentionally sampled from different agencies in each community to capture the variation in the experiences and demographics of young people accessing different types of homeless services. YEH accessing services during the data collection events were asked to participate in an eligibility screener. The screener determined age and homelessness status, defined as spending the prior night in a shelter, an apartment provided through a temporary housing voucher, on the streets, in a location not meant for human habitation, or temporarily with friends, acquaintances, or family where they could not stay for more than 30 days. For eligible participants, the researcher team obtained verbal informed consent. Interested individuals indicated their willingness to participate by clicking a box on a study tablet and beginning the survey. Data collection Once consented, an anonymous identification code was generated for each participant by using their mother’s first initial, the number of older brothers, month they were born, and middle initial. This procedure enabled us to search for and remove duplicates across data collection sites and cities. No duplicates were detected across cities. Next, the participant completed the Rapid Estimate of Adult Literacy in Medicine short form (REALM-SF) screener [22], which was modified to reflect words that would appear in the survey (e.g., transience, resilience, cocaine, pregnancy, satisfied, temporary, identity, hepatitis, victimization). If a participant scored 1 3 (of 9) on the REALM-SF, they were encouraged to have the survey read aloud by the researcher in a private setting. Those with scores higher than three completed the survey independently on the tablet. Study staff were available to assist participants as needed. However, the survey was designed to be self-administered to reduce the social desirability bias of face-to-face disclosure of sensitive information [23]. The survey took about 50 minutes to complete. Participants were given a $10 $20 gift card depending on city for a local store or restaurant after completing the survey. Measures The survey included questions about age, gender identity, race/ ethnicity, education, and sexual orientation. It inquired about YEHs’ duration of homelessness (dichotomized as <2 years or 2 years of accumulated lifetime homelessness), age at the onset of homelessness, and shelter status (categorized as sheltered, living on the streets, or unstably housed). Participants were asked about their sexual risk behaviors (e.g., number of sexual partners, concurrent partners, condomless sex), HIV status, HIV testing, perceived HIV risk, knowledge of and interest in PrEP. They also were asked to endorse supportive services they felt would enhance their uptake of and adherence to PrEP. Past or current PrEP use was not included in the survey. Perceived HIV risk. Perceived HIV risk was assessed using a fouritem measure [24]. Scores were summed, with higher scores
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indicating greater HIV risk perception. Items asked participants to rate, on a four-point scale, how much they agreed or disagreed with statements such as “It would be easy for me to get infected with HIV/AIDS.” This measure was not assessed in all locations; therefore, a subgroup analysis was performed with data from Los Angeles, New York City, Phoenix, and San Jose. The survey provided some information about PrEP before inquiring about perceived PrEP support services using this statement: “There is a medication called Truvada or PrEP that can help prevent HIV. This is a daily pill taken by mouth given to people at risk for HIV to help protect them from getting HIV.” Likelihood of PrEP eligibility. We assessed participants’ likelihood of being eligible for PrEP using a variable derived from items measuring drug use and sexual risk. This dichotomous variable was created to capture the potential clinical PrEP eligibility of participants based on the Clinical Guidelines issued by the Centers for Disease Control and Prevention (2014). While the questions in the survey did not match the guidelines exactly, there was sufficient overlap to develop a reasonable measure of participants’ likelihood of PrEP eligibility. A participant was coded as PrEP eligible if s/he indicated that they had 2 sexual partners during the past 3 months; sex (e.g., oral, vaginal, or anal) with more than one partner in 1 week during the past 3 months; condomless sex at their most recent sexual encounter or in the past 3 months; ever traded sex for money, drugs, a place to stay, food/meals, or anything else; were ever forced to exchange sex; had an STI in the past 6 months; injected drugs in the past 30 days; or identified as MSM. These criteria are appropriate for YEH due to both their high HIV prevalence and HIV risk behaviors. These criteria are not intended to discern those at highest risk for HIV but rather to identify youth who should seek further clinical assessment of PrEP eligibility. PrEP knowledge. We assessed participants’ knowledge about PrEP using a continuous variable derived from a five-point Likert scale that asked them to rate how much they knew about “PrEP a medication called Truvada that a person can take to help prevent getting HIV.” Response options ranged from “I have never heard about it;” “I have heard of it but don’t know what it is;” “I know a little about it;” “I know a lot about it;” and “I have talked to my doctor about it.” PrEP interest. We measured participants’ interest in receiving PrEP by asking youth, “If eligible for PrEP, how interested would you be in taking a medication that could drastically reduce your chances of getting HIV?” Answers ranged, on a five-point Likert scale, from not interested to very interested. Similarly, participants were asked, “How likely would you be to take a pill each day if you knew that it could greatly reduce your chance of getting HIV?”; those answers ranged, on a five-point Likert scale, from extremely unlikely to extremely likely. Finally, the participants were asked, “If your doctor recommended PrEP for you, how likely would you be to use it to prevent HIV infection?” These items used a fivepoint scale Likert scale ranging from extremely unlikely to extremely likely and were adapted from an existing scale with good reliability (a = 0.81) [25]. PrEP supportive services. We assessed the need for support using an existing scale [25]. Participants answered the following question: “If you were interested and eligible to take PrEP, how important would the following be to using PrEP?” The participant rated the importance of each item (e.g., free HIV/STI testing, counseling services, text supports); items were rated from 1 5 with one being not important at all and five being extremely important.
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Data analysis Frequencies and percentages of demographics and risk behaviors were examined. Potential correlates of the likelihood of PrEP eligibility were explored using bivariate logistic regressions conducted to assess for statistically significant differences. Comparisons of categorical measures were conducted using Odds Ratios (OR). Statistical significance was set at p 0.05. Results Sample demographics Participants (n = 1,427) were primarily (81%) young adults of color (37% black, 17% Hispanic, 16% mixed, 11% other) and cisgender (58% cisgender male, 34% cisgender female). Youth who identified at transgender (5%) were male-to-female (n = 40) and femaleto-male (n = 28). Almost one third (29%) were LGBQ, and the mean age was 20.9 years (standard deviation = 2.09) (Table 1). Most participants (60%) first experienced homelessness after turning 18 years old, had been homeless for less than 2 years (70%), and had primarily stayed in a shelter (49%) or outside (33%) the night before participating in the survey. HIV status and risk behaviors Overall, high levels of HIV risk behaviors were reported (Table 1). In the total sample, 70% reported condomless sex either at last sex or in the past 3 months, 44% had used substances during their most recent sexual encounter, 25% reported concurrent sexual partners in the past 3 months, 23% had ever traded sex, and 9% had injected drugs in the past 30 days. The median number of lifetime sexual partners among the entire sample was eight. Roughly 48.2% of the respondents had more than eight lifetime sex partners. HIV testing rates were high with 81.9% of youth indicating ever being tested for HIV. However, only 51.6% had been tested in the past 3 months. In the total sample, 4.4% of youth indicated that they had tested positive for HIV. Of youth who self-reported being HIV positive, 7/51 identified as a gay male, 19/51 as sexual minority, 7/51 as gender minority, and 13/51 reported injecting drugs in the last 30 days. Differences in HIV risk behaviors were noted by gender identity, sexual orientation, and geographic location. The proportion of cisgender females reporting inconsistent condom use (74%), trading sex (30%), and STIs (15%), was higher than cisgender males. Compared with cisgender females, cisgender males had higher rates of having concurrent sexual partners (26%) and using substances during the most recent sexual encounter (50%). The highest rates of concurrent sexual partners (34%) and trading sex (44%) were among those who identified as transgender or queer. The prevalence of all HIV risk behaviors was higher in LGBTQ participants than cisgender participants. Perceived HIV risk In the subsample of youth asked about perceived HIV risk, many participants felt it would be easy for them to contract HIV (61%), believed their behavior puts them at risk for HIV (66%), and worried about getting HIV (47%) (Table 2). Nonetheless, only 14% strongly agreed that they try to protect themselves from getting infected with HIV.
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Table 1 PrEP eligibility by demographic characteristics Characteristic n (%)
> 1 Sexual partner in past 3 months
Concurrent sexual partners
Condomless sex
Trade sex
IV Drug use
Potential PrEP eligibility
132 (11.6)
67 (4.7)
551 (67.6)
274 (25.0)
798 (70.0)
263 (23.3)
121 (8.7)
1,200 (84.3)
914 (64.2) 509 (35.8)
76 (10.6) 56 (13.3)
33 (3.6) 34 (6.7)
275 (52.8) 163 (55.6)
170 (23.9) 103 (27.0)
504 (70.2) 294 (70.3)
151 (21.0) 126 (30.1)
69 (7.7) 52 (10.3)
762 (83.4) 438 (86.1)
270 (19.0) 531 (37.3) 247 (17.3) 145 (10.2) 231 (16.2)
24 (11.8) 55 (12.4) 28 (14.8) 10 (8.9) 16 (8.3)
16 (5.9) 20 (3.8) 11 (4.5) 8 (5.5) 12 (5.2)
94 (59.1) 148 (49.3) 76 (55.9) 38 (50.7) 84 (57.5)
54 (27.7) 104 (25.8) 43 (21.9) 23 (19.5) 50 (27.3)
167 (72.3) 290 (68.1) 131 (71.9) 70 (68.6) 141 (71.9)
54 (23.4) 92 (21.6) 40 (21.7) 29 (28.4) 62 (31.8)
35 (13.1) 36 (6.9) 18 (7.5) 14 (9.7) 18 (8.0)
229 (84.8) 447 (84.2) 207 (83.8) 113 (77.9) 206 (89.2)
833 (58.5) 483 (33.9) 107 (7.5)
59 (9.4) 64 (15.2) 10 (11.2)
51 (6.1) 1 (0.2) 15 (14.2)
253 (57.6) 140 (45.2) 46 (69.7)
162 (26.2) 81 (20.9) 30 (34.1)
437 (67.4) 299 (73.8) 64 (75.3)
119 (18.4) 121 (29.9) 37 (43.5)
70 (8.6) 41 (8.6) 9 (8.7)
679 (81.5) 431 (89.2) 91 (85.1)
408 (28.6) 1017 (71.4)
51 (14.5) 82 (10.4)
67 (16.6)
152 (57.6) 287 (52.1)
97 (29.7) 177 (23.1)
250 (72.9) 549 (69.1)
137 (39.8) 139 (17.5)
41 (10.2) 79 (7.9)
364 (89.2) 838 (82.4)
436 (30.7) 985 (69.3)
43 (11.6) 90 (12.3)
18 (4.1) 49 (5.0)
155 (59.2) 284 (51.4)
103 (30.8) 170 (22.4)
271 (75.1) 527 (67.9)
120 (33.3) 157 (20.2)
32 (7.5) 89 (9.2)
380 (87.2) 821 (83.4)
573 (40.4) 845 (59.6)
55 (12.0) 78 (11.5)
23 (4.0) 44 (5.2)
185 (53.5) 255 (54.5)
126 (28.06) 148 (23.09)
333 (71.0) 465 (69.7)
141 (30.1) 135 (20.2)
58 (10.3) 63 (7.6)
495 (86.4) 704 (83.3)
263 (18.5) 692 (48.7) 465 (32.7)
33 (14.9) 50 (9.0) 50 (14.1)
17 (6.5) 32 (4.6) 18 (3.9)
96 (54.9) 181 (48.4) 163 (62.0)
62 (27.56) 106 (20.95) 106 (29.53)
155 (72.8) 371 (66.9) 270 (73.8)
61 (28.6) 129 (23.2) 87 (23.8)
19 (7.3) 47 (6.9) 55 (12.1)
227 (86.3) 577 (83.2) 394 (84.7)
215 (15.1) 208 (14.6) 203 (14.2) 208 (14.6) 197 (13.8) 198 (13.9) 197 (13.8)
18 (10.0) 16 (10.1) 20 (11.7) 20 (13.2) 21 (14.0) 15 (8.3) 23 (15.9)
23 (10.7) 8 (3.8) 6 (3.0) 10 (4.8) 3 (1.5) 9 (4.5) 8 (4.1)
78 (59.5) 61 (52.1) 53 (50.0) 59 (50.4) 62 (49.6) 56 (50.9) 71 (64.5)
45 (27.44) 34 (22.37) 32 (21.33) 35 (21.74) 39 (24.68) 34 (21.25) 55 (36.67)
130 (71.0) 129 (74.1) 107 (67.3) 120 (74.1) 113 (68.9) 93 (64.1) 108 (71.1)
59 (32.4) 23 (13.2) 43 (27.0) 44 (27.2) 28 (17.2) 37 (25.3) 43 (28.1)
16 (7.6) 20 (9.7) 15 (7.5) 20 (9.8) 15 (7.8) 19 (9.8) 16 (8.4)
188 (87.4) 177 (85.1) 176 (86.7) 174 (83.7) 163 (82.7) 177 (89.4) 148 (75.1)
STI = Sexually transmitted infection; LGBQ = Lesbian, gay, bisexual, or questioning
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MSM
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Total sample Age 18 21 years 22 26 years Race/Ethnicity White Black Latino(a) Other Mixed Gender identity Cisgender male Cisgender female Transgender/Queer Sexual orientation LGBQ Heterosexual Length of homelessness >2 years < 2 years Age at first homeless <18 18 Shelter status Couch surfing Shelter Outside City Los Angeles Denver Houston Phoenix St. Louis New York City San Jose
Ever had STI
Total sample
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5
Table 2 Subanalysis of perceived HIV riska
It would be easy for me to get infected with HIV or AIDS My behavior puts me at risk for HIV or AIDS I worry about getting infected with HIV or AIDS I try to protect myself from being infected with HIV or AIDS
Strongly disagree n (%)
Somewhat disagree n (%)
Somewhat agree n (%)
Strongly agree n (%)
78 (11.3) 55 (8.0) 149 (21.5) 425 (61.4)
108 (15.6) 85 (12.3) 76 (11.0) 49 (7.1)
83 (12.0) 97 (14.0) 141 (20.3) 123 (17.8)
424 (61.2) 454 (65.7) 328 (47.3) 95 (13.7)
a
Includes youth from Los Angeles, Phoenix, New York City, and San Jose
PrEP eligibility Most participants (84%) were found to be eligible for PrEP using our proxy measure of PrEP eligibility (Table 1). A bivariate analysis of PrEP eligibility by demographic characteristics revealed several differences: PrEP eligibility significantly differed by gender identity, sexual orientation, and location. Specifically, cisgender females were significantly more likely to be PrEP eligible (OR = 1.9, CI = 1.3 2.6, p < .01) than cisgender males. LGBQ participants (OR = 1.8, CI = 1.2 2.5; p < .01) were significantly more likely to be PrEP eligible than heterosexual participants. Youth from New York City (OR = 1.7, CI = 1.0 2.7, p < .01) were significantly more likely to be PrEP eligible when compared to youth from other cities. Youth from San Jose (OR = 0.5, CI = 0.3 0.7, p < .001) were significantly less likely to be PrEP eligible when compared to youth from other cities. There were no significant differences in PrEP eligibility by age, race/ethnicity, length of homelessness, age at first homelessness, or shelter status. PrEP knowledge, interest, and endorsed support Only 29% of youth had any knowledge of PrEP and only 4% of youth had talked with a doctor about PrEP (Table 3). Knowledge about PrEP differed significantly by gender identity and study site; transgender participants were more likely to have heard of PrEP than cisgender males (OR = 4.3, CI = 2.8 6.5, p < .001) or females (OR = 3.5, CI = 2.2 5.4, p < .001) and the highest rates of PrEP knowledge were among participants in Los Angeles (OR = 2.6, CI = 1.9 3.5, p < .001) and New York (OR = 2.3, CI = 1.7 3.1, p < .001). Despite having little or no knowledge, 59% reported they were likely or extremely likely to take PrEP if recommended by their doctor. Transgender participants also reported significantly more interest in PrEP than cisgender males (OR = 2.1, CI = 1.3 3.5, p < .01), though 43% of the total sample were moderately to very interested. No significant differences by sexual orientation were found. Access to free HIV testing (72%), healthcare (68%), one-onone counseling on PrEP use (62%), text messaging support (57%), and free PrEP medication (55%) were all rated as very important or extremely important for using PrEP among participants (Figure 1). Discussion To our knowledge, this is the first study using a large, geographically diverse sample of YEH, primarily youth of color, to
assess their perceived HIV risk; PrEP eligibility, awareness, and interest; and suggested supportive services to enhance PrEP use. The results inform HIV prevalence data among YEH, albeit using self-report and suggests key opportunities to prevent new HIV infections among YEH. Despite the high rate of potentially PrEP eligible YEH in the entire sample (84%), only 66% of the subsample asked thought they were at risk for HIV, and only 14% reported that they were trying to protect themselves from becoming infected with HIV. While only a subsample of youth were asked about perceived HIV risk, this disconnect between actual and perceived risk and between HIV risk and protective behaviors has been described in other populations in the U.S. [26]. In this study population, low perceived HIV risk may have been exacerbated by adolescent brain development [27,28] and negatively impacted by high levels of trauma experienced prior to and during homelessness [29,30]. Further research is needed to inform effective strategies to enhance PrEP awareness and uptake by addressing developmental stage and the impact of trauma on risk behavior. Further, risk-group specific investigation of drivers of low HIV risk perception and low uptake of protective strategies is critical particularly among groups with high HIV burden such as young MSM, transgender women, and black cisgender women. Despite the high HIV risk in this population, PrEP knowledge was low, especially in the mid-west and southern regions. This is particularly concerning given that the southern U.S. is the region that experiences the greatest burden of HIV diagnoses [31]. However, once informed, participants showed interest in PrEP. Unfortunately, YEH often lack access to basic sexual health education and preventative healthcare including PrEP, further impeding HIV prevention efforts [20]. Incorporating PrEP into accessible sexual health education is needed to increase knowledge and awareness of PrEP. Our findings mirror recommendations for PrEP supports, including free HIV testing, access to point-of-contact healthcare, sexual health counseling, and text-based and individualized supportive services [25,32,33]. Young adults experience unique barriers to accessing PrEP that should to be considered when designing HIV prevention programs [32,34]. These barriers may also drive low PrEP adherence, an upstream consideration essential to the HIV prevention continuum. Existing PrEP guidelines primarily focus on clinical monitoring protocols and do not provide guidance on how to address the impact of mental health and stigma on the willingness or ability of at-risk populations, such as YEH, to access, initiate, and adhere to PrEP.
Table 3 PrEP knowledge, interest, and likelihood to uptake
PrEP knowledge PrEP interest Likelihood to take PrEP PrEP uptake if prescribed
PrEP barriers (frequency, %)
PrEP facilitators (frequency, %)
No knowledge (989, 70.9) No/low interest (583, 41.8) Unlikely (414, 29.7) Unlikely (321, 23.1)
Talked to a HCP about PrEP (59, 4.2) Moderate/Very interested (583, 41.8) Likely (722, 50.9) Likely (813, 58.5)
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D. Santa Maria et al. / Journal of Adolescent Health 00 (2018) 1 7
Figure 1. Percentage of participants who endorsed PrEP uptake and adherence supportive services.
Furthermore, young adults at highest risk for HIV are disproportionately impacted by factors that limit their access to PrEP, particularly those related to homelessness; lack of identification and health insurance, low healthcare utilization, lack of jobs and stable income, transportation needs, and unstable housing [15,35,36]. Comprehensive PrEP guidelines for YEH should also include strategies to combat the layered disparities related to HIV and homelessness within youth-service organizations, communities, and the healthcare system to engage youth in the full continuum of HIV prevention, care, and monitoring services [32]. Finally, further research on disclosure and layered stigma among YEH is needed. Provider- and system-level factors may be contributing to the delay in PrEP rollout to YEH [37]. While the integration of PrEP into routine care will expand reach [37], healthcare providers often do not appropriately recommend its use [38]. Despite compelling efficacy data and comprehensive clinical guidelines, providers working with at-risk young adults report having limited PrEP knowledge, familiarity with PrEP clinical guidelines, and willingness to prescribe PrEP [39]. In addition, the Food and Drug Administration has recently approved PrEP for use among youth under 18 years of age. Additional research focused on YEH under 18 is needed. In addition, pediatric and adolescent provider skill building and practice level changes are needed to increase PrEP access for at-risk minors [33]. Other possible barriers to dissemination among youth and young adults include lack of health insurance, medication, laboratory tests, and office visit costs; need for supportive services such as counseling and text-based medication and risk-management services; and a lack of targeted, personalized HIV prevention programs that address the challenges faced by YEH. This study adds to the literature on HIV prevention among YEH; however, several limitations should be noted. This was a cross-sectional study, and associations rather than causation can be drawn
from the data. Moreover, the sample was primarily recruited from homeless youth service organizations versus the street. The sample did not include youth under 18 years of age and therefore cannot address PrEP eligibility, knowledge, and attitudes among minors experiencing homelessness. As well, this sample does not include YEH from the southeastern U.S. Finally, the measure for PrEP eligibility did not match the Centers for Disease Control and Prevention guidelines exactly, and therefore can only be interpreted as an approximation of potential PrEP eligibility among YEH. Additional research is needed to determine effective strategies to support PrEP uptake in YEH to inform the dissemination of HIV prevention programs. PrEP awareness and uptake may be improved by providing youth-friendly settings that incorporate technology-assisted support, individualized case management, and increased frequency of clinic visits [35]. Access to free medication, monitoring, testing, and counseling is important to supporting PrEP uptake. High-yield interventions will reduce system and individual-level barriers to accessing healthcare providers who can prescribe and manage PrEP. Efforts also should target healthcare providers and homeless healthcare systems to increase providers’ PrEP knowledge and skills, decrease PrEP-associated healthcare costs, and improve access to PrEP. Research is also needed to explore actual uptake versus interest in uptake. Youth often demonstrate low PrEP adherence [14]. This may be even more exaggerated among YEH, particularly among those who report low perceived HIV risk. Despite HIV vulnerability, only about half of youth reported they would likely take a pill each day if they knew it could greatly reduce their chance of getting HIV. Further, research on the barriers to and facilitators of PrEP use and adherence is needed for developing and testing of evidence-based PrEP support services among YEH and minors experiencing homelessness.
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Acknowledgments We thank the multiple REALYST.org community partners and young people who collaborated and participated in this study.
Funding Sources This research received support from the Greater Houston Community Foundation Funders Together to End Homelessness (D.S.M. and S.N.), the National Institute of Mental Health K23MH10935802 (C.F.), F31MH108446 (R.P.), and Arizona State University Institute for Social Science Research (K.F.).
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