Utilization and Avoidance of Sexual Health Services and Providers by YMSM and Transgender Youth Assigned Male at Birth in Chicago

Abstract

Young men who have sex with men (YMSM) and transgender youth assigned male at birth (AMAB) bear a disproportionate burden of the HIV epidemic, yet are sub optimally engaged by sexual health service providers and HIV prevention services. To increase sexual health and HIV prevention behaviors and address disparities in HIV incidence and outcomes among YMSM and AMAB transgender youth, it is critical to understand patterns of service utilization and avoidance. This study examined how and why YMSM and AMAB transgender youth use or avoid sexual health services and service providers in a large Midwestern city within a survey administered to 890 participants from a longitudinal cohort study (RADAR). Results demonstrate low overall use of sexual health services and minimal interest in seeking pre-exposure prophylaxis (PrEP), consistent with prior research. Low awareness of available services was associated with how and where YMSM and trans youth AMAB seek care, with 76% of our sample reporting this as their primary reason for not seeking specific sexual health services. Additional associations are discussed, and recommendations are made for how to improve available services and access.

Introduction

In the United States, the HIV epidemic continues to disproportionately impact men who have sex with men (MSM), particularly young MSM (YMSM) and transgender youth assigned male at birth (AMAB) who have sex with men; the Centers for Disease Control and Prevention (CDC) estimate that 70% of all new HIV diagnoses in 2016 were in MSM (Centers for Disease Control and Prevention, 2017). A supplemental report indicates that, among the 24,730 adolescent males who received an HIV diagnosis between 2011–2015, male-to-male sexual contact accounted for 85% of all infections (Centers for Disease Control and Prevention, 2018a). In addition, low awareness of HIV status may contribute to disease spread among YMSM; a 2012 CDC Morbidity and Mortality Weekly Report stated that over half of youth living with HIV (59.5%) were not aware of their status, and that 72.1% of new infection in youth was in MSM (Centers for Disease Control and Prevention, 2012). Of note, HIV surveillance has historically considered transgender women as “MSM” by birth sex (Poteat, German, & Flynn, 2016) resulting in limited national data on the state of HIV among AMAB transgender individuals. However, there is significant evidence that this population experiences unique HIV risk as well (Baral et al., 2013; Centers for Disease Control and Prevention, 2018b; Clark, Babu, Wiewel, Opoku, & Crepaz, 2017).

One key way of achieving optimal outcomes in HIV prevention and care activities is through active engagement with a provider, clinic, or other organization (Axelrad, Mimiaga, Grasso, & Mayer, 2013). Unfortunately, healthcare utilization, and sexual healthcare utilization in particular, is suboptimal among YMSM (Centers for Disease Control and Prevention, 2012; Sharma et al., 2017). Further, as expected given evidence that YMSM are often unaware of their own HIV status, many studies have demonstrated low levels of HIV testing among YMSM (Centers for Disease Control and Prevention, 2012; Finlayson et al., 2011; Phillips, Ybarra, Prescott, Parsons, & Mustanski, 2015) and transgender women (Pitasi, Oraka, Clark, Town, & DiNenno, 2017). Infrequent or irregular testing among demographics at elevated risk for HIV is particularly concerning, as an HIV test typically represents a key entry point into the continuum of HIV prevention or care (Axelrad et al., 2013). Thus, many researchers have made it a priority to understand the factors which may encourage or discourage YMSM and young AMAB transgender individuals from engaging with sexual health services.

Some research thus far has highlighted the role of individual-level disparities in HIV testing with a particular focus on factors such as age, race/ethnicity, income, and disclosure of sexual orientation (Adebayo & Gonzalez-Guarda, 2017; Arnold, Rebchook, & Kegeles, 2014; Balaji et al., 2012; Finlayson et al., 2011; Kenagy et al., 2003; Leonard, Rajan, Gwadz, & Aregbesola, 2014; Mimiaga et al., 2009; Sumartojo et al., 2008; Tilson et al., 2004). In addition to individual-level concerns, structural- and provider-level factors both play a major role in influencing use of sexual health services – these factors include distance to provider, how welcoming a provider is perceived to be, stigma surrounding the provider (i.e., known in the community as an HIV clinic), and accessibility (Adebayo & Gonzalez-Guarda, 2017; Finlayson et al., 2011; Hoffman, Freeman, & Swann, 2009; Leonard et al., 2014; Levy et al., 2014; Lorenc et al., 2011; Medline et al., 2017; Merchant et al., 2017; Mimiaga et al., 2009; Petroll & Mosack, 2011; Sumartojo et al., 2008; Wall, Khosropour, & Sullivan, 2010; Worthington & Myers, 2002). Studies have also cited financial and insurance-related concerns, lack of culturally competent care, and mistrust of the medical system as barriers to sexual health care engagement (Eaton et al., 2015; Hock-Long, Herceg-Baron, Cassidy, & Whittaker, 2003; Levy et al., 2014; Luk, Gilman, Haynie, & Simons-Morton, 2017; Mimiaga et al., 2009; Tilson et al., 2004; Wall et al., 2010). Individual-level factors may further interact with availability of sexual health services, and other structural or social concerns, to influence where YMSM and AMAB transgender individuals go to seek services, and their engagement with the services they do access (Lauby & Milnamow, 2009; Lorenc et al., 2011; Schneider et al., 2012).

In sum, understanding both how and why adolescent MSM and AMAB transgender individuals utilize sexual health services is an important step towards reducing the burden of HIV in these marginalized populations. Therefore, the current study sought to contribute to what is known about both patterns and drivers of sexual health service utilization among YMSM and AMAB transgender individuals by investigating several key questions: 1) Are there demographic differences in number of sexual health services and providers participants report accessing? 2) What sexual health services do participants utilize? 3) What types of agencies are primarily used for specific services? 4) Why do participants avoid certain sexual health service providers?

Methods

Parent Study

RADAR is a longitudinal cohort study of YMSM and AMAB transgender individuals in Chicago focused on understanding the individual, dyadic, network, social, and biologic factors that are associated with HIV infection. Data collection for RADAR began in February of 2015 and is ongoing. Study participants complete an initial assessment that includes a network survey, an individual-level psychosocial survey, and collection of biological samples for HIV and STI testing. Subsequent visits occur every six months for the duration of the cohort study.

Supplemental Study

PLoT ME (Plotting Layers of Transmission in Micro-Epidemics) is a supplemental study focused on provider-, neighborhood-, and venue-level factors associated with HIV acquisition. As part of PLoT ME, a series of new network data capture screens were added to the RADAR Network Canvas protocol (netCanvas-R) (Hogan et al., 2016) which collected information on where participants go to meet friends or sex partners, mobile apps used to meet sex partners, and sexual health service providers and services accessed. The PLoT ME network protocol was administered to all participants with a follow-up study visit occurring between 06 September 2016 and 08 September 2017 (n = 890). Data in this report are limited to those collected in the first visit at which PLoT ME was administered. All procedures performed in studies involving human subjects were in accordance with the ethical standard of the institutional research committee and with the 1964 Helsinki Declaration and its later amendments. Approval was granted by the Northwestern University IRB prior to study implementation. Informed consent was obtained from all participants included in the study.

Measures

In addition to demographic information such as age, race/ethnicity, gender identity, sexual orientation, and HIV status, we assessed participants’ patterns of sexual health service and provider engagement. Participants who lived in Chicago were asked to select their census tract of residence from a map screen in netCanvas-R. They were then asked, “In the last 6 months, have you gone to a healthcare provider in Chicago for sexual health services such as HIV or STI testing, prevention, or treatment?” Anyone who indicated “Yes” was taken to a screen in which a 1-mile radius around their residence was shown, along with all healthcare providers located within that radius (Figure 1). Providers were identified through a comprehensive review of available provider databases as well as thorough internet searches for key terms such as “HIV services” or “STI testing.” Participants could tap on any provider shown to indicate their utilization of services at this provider; for providers not selected, there were two follow-up questions. First, participants were asked if they were aware of each of these providers. If they reported being aware of a provider, they were then asked for the main reason why they did not seek services at that location. Finally, participants were asked to add any other sexual health service providers they used in the prior 6 months.

Figure 1.

Example screen from PLoT ME netCanvas-R protocol.

If at least one sexual health service provider was nominated in the prior screens, additional questions were asked about the services accessed at each of these providers:

• “Have you gone to this service organization for testing in the last 6 months? This could be HIV testing, STI testing, or viral load testing?”

• “Have you gone to this service organization for prevention services in the last 6 months? For example, these could include things like condoms, PrEP, or PEP.”

• “Have you gone to this service organization for treatment in the last 6 months? This could include antiretroviral medication for HIV infection or antibiotics for gonorrhea/chlamydia.”

All names of sexual health service providers added by the participants were cleaned and standardized by study staff to ensure an accurate count of unique providers. Then, providers were coded as one of 6 organization types: College Health Center, Community-Based Organization (CBO), Community Health Center, Hospital, Private Practice, and Other. Additionally, there were 573 responses to the open-ended question for why a local provider was not used. Responses were double-coded by team members to identify broad or consistent themes in responses (for example, responses such as “insurance won’t cover it” and “can’t afford it” were both coded as “cost/insurance concerns”). During double coding, each team member independently found that 15 distinct categories emerged organically. Discrepancies in coding were then reconciled by the study PI.

Statistical Analysis

Univariate statistics were used to describe number of sexual health service providers used, services accessed, and reasons why participants did not attend specific providers. Bivariable analyses were conducted to assess the association between number of providers reported (0, 1, 2+) and demographic characteristics; chi-square tests were conducted for categorical variables, and a Kruskal-Wallis test was used for age, as it was not normally distributed. Similar bivariable analyses were conducted to look at significant associations between organization type and both demographics and services accessed. All analyses were conducted in SAS v9.4 (Cary, NC).

Results

Of the 890 participants, 402 (45.2%) named at least one provider they had seen in the past 6 months, and 10.7% indicated two or more. Number of providers ranged from 1 to 6, with a mean of 1.3 named (standard deviation = 0.7). The age range of participants was 16–31 years.

Differences by Number of Providers Named

Significant demographic differences were seen based on number of sexual health service providers nominated (Table 1). Transgender women were less likely than either cisgender men or other gender individuals to have 0 providers (37.5% vs. 56.0% and 51.7%, respectively). Additionally, White participants were the most likely to report no providers (70.3%), Black participants were the most likely to indicate a single provider (44.5%), and multiracial individuals were the most likely to report at least two providers (21.7%). Increasing provider number was also significantly associated with increasing age. Finally, more than half of HIV- individuals reported accessing services at 0 venues (58.3%), whereas the vast majority of participants living with HIV indicated one (60.3%) or 2+ (21.8%) service providers.

Table 1.

Bivariate associations with number of sexual health service providers nominated by RADAR participants.

	0 providers	1 provider	2+ providers	Chi-square (p-value)
	n (%)	n (%)	n (%)
Gender				20.9 (0.0003)
Cisgender male	455 (56.0)	280 (34.4)	78 (9.6)
Transgender female	18 (37.5)	22 (45.8)	8 (16.7)
Not Listed	15 (51.7)	5 (17.2)	9 (31.0)
Race/Ethnicity				52.1 (<0.0001)
Black	132 (42.9)	137 (44.5)	39 (12.7)
White	154 (70.3)	50 (22.8)	15 (6.9)
Hispanic/Latino	150 (56.6)	89 (33.6)	26 (9.8)
Multiracial	34 (49.3)	20 (29.0)	15 (21.7)
Other	18 (62.1)	11 (37.9)	0 (0.0)
Sexual Identity				6.48 (0.17)
Gay/Lesbian	343 (53.9)	230 (36.1)	64 (10.1)
Bisexual	86 (60.1)	44 (30.8)	13 (9.1)
Other	59 (53.6)	33 (30.0)	18 (16.4)
Age, years (median, IQR)*	20.8 (3.7)	22.9 (4.9)	23.4 (4.9)	64.8 (<0.0001)
Education				8.55 (0.20)
Less than high school	48 (52.8)	29 (31.9)	14 (15.4)
High school/GED	88 (50.9)	68 (39.3)	17 (9.8)
Some college	290 (57.1)	162 (31.9)	56 (11.0)
At least undergraduate degree	62 (52.5)	48 (40.7)	8 (6.8)
HIV Status				47.4 (<0.0001)
Positive	14 (18.0)	47 (60.3)	17 (21.8)
Negative	473 (58.3)	260 (32.1)	78 (9.6)

^*Kruskal-Wallis test

Services Accessed

Participants reported accessing a number of sexual health services at the 538 providers named (Table 2). Among HIV-negative participants, who named 390 providers, these services included HIV testing, pre-exposure prophylaxis (PrEP), and post-exposure prophylaxis (PEP); among participants living with HIV (n = 148 providers), services included CD4+/viral load testing and antiretroviral therapy (ART) provision. The most frequently cited reason that participants gave for going to a service provider was to seek HIV/STI testing (88.3%). Within this category, the most accessed service was HIV testing among HIV- participants (55.9%), with similar numbers testing for syphilis, gonorrhea, and chlamydia (Table 2). Approximately two-thirds of venues were used for either prevention services (70.5%) or treatment services (67.1%). Among HIV-negative participants, 13.3% sought PrEP and 1.8% sought PEP. Among individuals living with HIV, similar proportions accessed CD4+/viral load testing (25.0%) or ART (22.3%).

Table 2.

Reported Services Accessed at Sexual Health Service Providers in Chicago (N=538 providers).

	n	%
HIV/STI Testing†	475	88.3
HIV testing*	218	55.9
Syphilis testing	226	42.0
Hepatitis C testing	163	30.3
Rectal gonorrhea testing	227	42.2
Urethral gonorrhea testing	233	43.3
Rectal chlamydia testing	229	42.6
Urethral chlamydia testing	235	43.7
Prevention Services†	379	70.5
Male condoms	165	30.7
Female (internal) condoms	17	3.2
PrEP*	52	13.3
PEP*	7	1.8
Treatment Services†	361	67.1
CD4+/viral load**	37	25.0
Antiretroviral medication**	33	22.3
STI medication	82	15.2
Other medication	38	7.1

^*Service limited to HIV-negative participants (n=390 providers);

^**Service limited to HIV-positive participants (n=148 providers)

^†Participants could select overarching category without selecting subtopics.

Provider-Type Service Utilization

Participants named 125 unique sexual health service providers within Chicago, with one clinical health center named 107 times. More than half of providers named were community health centers (56.1%); 20.1% were hospitals and 15.8% were CBOs. Smaller percentages were college health centers (3.5%), private practices (2.2%), or something else (2.2%).

Visits to hospitals (67.6%) and community health centers (75.2%) primarily constituted treatment services, compared with CBOs (51.8%), private practices (50.0%), and college health centers (42.1%; p < 0.0001). Although there were no organizational differences for urethral STI testing, significant differences were seen for both rectal chlamydia and rectal gonorrhea testing. In each case, visits to CBOs and community health centers were significantly more likely to include one of these tests (gonorrhea: p = 0.005; chlamydia: p = 0.011). Finally, visits to community health centers (61.9%), CBOs (60.0%), and private practices (58.3%) were substantially more likely to include an HIV test than visits to a college health center (26.3%) or to a hospital (34.3%; p < 0.0001).

Participants who reported using hospitals had the highest median age (24.9 years), whereas those who used college health centers were the youngest (median: 20.5 years; p > 0.0001). There were also clear racial/ethnic differences – college health centers were primarily reported by Latino participants (52.6%), hospitals were primarily reported by Black participants (61.1%), and private practices were predominantly indicated by White individuals (58.3%; p < 0.0001).

Provider Avoidance

Study participants reported accessing services at a mean of 0.11 providers within a 1-mile radius of their home census tract, or 4.51% of those shown. For those local providers that were not utilized, the vast majority (n = 1,828; 76.0%) were due to a lack of awareness of the provider and/or relevant sexual health services offered. Participants reported being aware of the remaining 573 providers, and gave a variety of reasons for not using these nearby providers (Table 3). Of the reasons reported, being in care elsewhere (e.g., “Already have a doctor”) was reported for nearly one-third of providers (32.3%). Next most cited reasons included not needing services (12.0%), proximity/inconvenience (e.g., “Too close to my house,” “they don’t provide what I need;” 8.9%), and unfamiliar with institution (6.3%). Fewer participants indicated reasons such as prior bad experiences (e.g., “Mispronouning and discriminating”) and lack of cultural competency (e.g., “Believed it would be unsafe/unwelcoming to a trans woman”).

Table 3.

Frequency of Reasons Reported for Not Utilizing Nearby Service Providers (N=573 providers).

	n	%
In care elsewhere	185	32.3
Did not need services	69	12.0
Distance/inconvenience	51	8.9
Unfamiliar with institution	36	6.3
Not a member of target population	25	4.4
Cost/insurance concerns	24	4.2
Bad experiences	20	3.5
Privacy (e.g., know people there)	15	2.6
Wrong type of agency (e.g., hospital)	13	2.3
Schedule/availability issues	11	1.9
Not LGBT safe/friendly	11	1.9
Poor reputation in community	11	1.9
Do not provide relevant services	7	1.2
No specific reason given	68	11.9
Other	27	4.7

Note: For all providers within a 1-mile radius of the participant’s residence that were not selected, participants were asked if they were aware of the provider. For the 573 providers that participants did not use but were aware of, participants were asked for the main reason they did not go to this location.

Discussion

Within this study, we found that less than one-half of participants reported visiting a sexual health service provider in the prior six months. Although this number is concerning, particularly within a population at elevated risk for HIV acquisition and transmission, it should be interpreted within its specific context. Participants were attending regular study visits which included HIV and rectal STI screenings, and most likely viewed this as at least a partial substitute for visiting a sexual clinic or health center. However, of particular note are the demographic factors that were associated with not seeing a sexual health service provider; those in this group were more likely to be cisgender males, White, younger, and HIV-negative. The finding that more individuals living with HIV were engaged with healthcare is not surprising – in order to access ART and regular viral load testing, having a clinic or provider is a necessity. However, as young sexually active MSM are high priority targets for PrEP (Bekker, Johnson, Wallace, & Hosek, 2015; Centers for Disease Control and Prevention, 2014), their lack of engagement in clinical care is worrisome for ensuring they remain HIV-negative.

Overall, more than 10% of participants reported accessing services at two or more providers. Although this may indicate a preference for the traditional siloed model of prevention, it also may be simply due to proximity or availability of the provider. CBOs traditionally are unable to prescribe medications, but are a convenient source for condoms or HIV testing. In regions with sparse distribution of services, a CBO or local clinic may be much more accessible than a large medical center. Additionally, transgender women who are medically transitioning (i.e., undergoing Hormone Replacement Therapy) may have unique providers for these services as they involve regular monitoring of hormone levels (Unger, 2016). Future work should therefore seek to compare patterns of service usage based on density of sexual health service providers to see whether accessibility plays a role in selection.

We also observed significant and critical differences in services accessed by provider type. Specifically, we found that rectal testing for both chlamydia and gonorrhea was significantly more likely to occur at CBOs and community health centers. This finding is novel in that prior research has not described venue-based differences in rectal STI testing. However, significant literature exists to suggest that rates of rectal STI testing for chlamydia and gonorrhea are well below those recommended by federal health organizations (Berry et al., 2010; Landovitz, Gildner, & Leibowitz, 2018). Although it is perhaps intuitive that community health centers and CBOs, given their frequent role as HIV service providers, would offer rectal STI testing at increased rates, these results still suggest that increasing rectal STI testing services at other organizations may help with closing the gap between recommended and observed rates of testing, particularly among individuals living with HIV for whom regular STI testing is especially important.

Additionally, our study observed important demographic differences by types of providers accessed. Specifically, we found that Black participants were more likely to access services at hospitals, whereas younger and Latino participants were more likely to access services at college health centers. However, hospitals and college health centers were the least likely providers sought for HIV testing. Although this finding is unsurprising – these locations are rarely seen as testing venues – it does have important implications for practice. Each of these subgroups of MSM are at elevated risk for HIV, and have relatively low rates of HIV testing (Phillips et al., 2015; Wejnert et al., 2016). Therefore, although White participants were less likely to be engaged with providers than other racial/ethnic demographics in our study, BMSM and Latino MSM who were engaged in care may still not have been receiving adequate prevention services. In the absence of available “one-stop shop” locations, hospitals and school health centers which do not typically focus on sexual health services may benefit from more intentionally incorporating HIV screening, testing, or referral for MSM, with a focus on disparity subpopulations. This is consistent with CDC recommendations (Branson, 2007) and should be given explicit consideration.

Finally, results indicate that the primary reason for provider avoidance was due to unfamiliarity with the provider or services offered, which potentially speaks to a need to increase awareness of sexual health services within the community. This is especially important to emphasize in the South and West sides of Chicago, where most racial, sexual, and gender minorities at elevated risk for HIV (i.e., Black and Latino individuals assigned male at birth who have sex with men) reside and where available providers are scarce. Notably, reports of discrimination and poor cultural competency were infrequent in our sample. This result is encouraging as cultural competence in health care has consistently been associated with elevated trust in one’s provider, and has been thus found to lead to better HIV care outcomes among MSM (Blackstock, Addison, Brennan, & Alao, 2012; Gaston, 2013; Saha et al., 2013). Therefore, we recommend concentrated advertisements and informational efforts to improve awareness of resource availability, particularly in underserved community areas, and to emphasize the importance of engagement with sexual health services.

Limitations

All data were collected during an interviewer-assisted survey via self-report, and thus are open to a number of biases including recall and social desirability. As data were only collected during follow-up visits, participants likely had developed rapport with study staff already and were more willing to report on sensitive topics. Additionally, an evaluation of netCanvas-R showed that participants reported similar quality sexual behavior data as during a self-administered portion (Hogan et al., 2016), lending credibility to the validity of the data. Further, the sample was limited to people who had attended at least two study visits; as they were motivated to attend these visits at a community health center and undergo HIV/STI testing, they are likely different from the general population of YMSM and AMAB transgender individuals in Chicago. We also limited the scope of the providers reported to those within the city of Chicago, and thus individuals who live in the suburbs may be underrepresented. Finally, due to small sample sizes for provider avoidance, we were unable to conduct more nuanced investigations into the role of demographic factors in the results we observed.

Conclusion

In order to adequately address the HIV epidemic in Chicago and achieve the city’s Getting to Zero goals (City of Chicago, 2017; Getting to Zero Exploratory Workgroup, 2017), it is critical to understand why and how individuals at elevated HIV risk access sexual health service providers. More work is needed to improve knowledge of and access to services, as there is an evident gap between resource availability and awareness among demographics at elevated risk for HIV in Chicago. Other large metropolitan cities with a diversity of sexual health service providers and organizations may wish to undertake similar surveys to understand where best to direct HIV treatment and prevention resources.