Abstract
Objective
Preexposure prophylaxis (PrEP) is a safe and effective method for HIV prevention, but little is known about PrEP uptake in rural and small urban areas. We described rates and predictors of HIV PrEP initiation among public health clients in rural and small urban areas in Iowa.
Methods
This was a prospective cohort study of clients with PrEP indications served by HIV testing and disease intervention specialist/partner services (DIS/PS) programs in public health departments in Iowa from February 1, 2018, through February 28, 2019. Eligible participants were aged 18-70 and referred for PrEP by public health personnel. Participants completed surveys at enrollment addressing demographic characteristics; sexual history; previous drug use; PrEP experiences; and knowledge, attitudes, and beliefs about PrEP. A follow-up survey assessed PrEP initiation at 30 days. We compared baseline characteristics of PrEP initiators and non-initiators.
Results
Two hundred thirty-four public health clients consented to participate in the study; 189 completed the baseline survey, and 117 (61.9%) completed the follow-up survey. The mean age of participants in the baseline survey was 30 (range, 18-68); 109 (57.7%) were male, 127 (67.2%) were White, and 169 (89.4%) lived in a rural or small urban area. Of 117 participants in the follow-up survey, those who initiated PrEP were significantly more likely than those who did not initiate PrEP to be referred by DIS/PS programs (46.7% vs 7.8%, P < .001) and to recognize that PrEP was ≥90% effective (86.7% vs 35.3%, P = .001). No PrEP initiators and 8 PrEP non-initiators agreed that PrEP is for promiscuous people (0% vs 7.8%, P = .04). Perceived PrEP stigma was low and not associated with PrEP initiation.
Conclusions
PrEP initiation rates were low among rural and small urban health department clients. Interventions are needed to improve linkage to PrEP among rural and small urban public health clients.
Preexposure prophylaxis (PrEP) using emtricitabine/tenofovir disoproxil fumarate or emtricitabine/tenofovir alafenamide is a safe and highly effective method for the prevention of HIV infection. 1 -4 The Centers for Disease Control and Prevention recommends PrEP for men who have sex with men (MSM) whose partners are potentially living with HIV, heterosexual men and women with additional HIV risk factors, and people who use intravenous drugs and share needles. 5 PrEP prevents HIV infection in >90% of those who are adherent, 6 yet several studies estimate that <10% of eligible people receive PrEP, with large variation by race, gender, and geography. 7 -9
Studies have described factors associated with PrEP use in large urban areas in the United States, 10,11 but little is known about factors associated with PrEP use in small urban and rural areas. 12 -14 Barriers to PrEP initiation in small urban and rural areas may include stigma, privacy concerns, lack of available PrEP providers, and long distances to care. 12,15 -17 Studies in 2018 and 2019 by Siegler et al 13,18 found that most US states had <1 PrEP-providing clinic per 100 000 population, with considerable geographic variation and limited availability of PrEP providers in rural areas.
Public health departments serving rural and small urban communities often support programs for HIV and sexually transmitted infection (STI) testing and prevention, which may serve as useful settings for PrEP referral. 19,20 The Iowa Department of Public Health oversees 11 HIV counseling, testing, and referral (CTR) programs that provide free HIV testing in a range of health care and community outreach settings, as well as 12 regional disease intervention specialist/partner services (DIS/PS) programs that work with people with HIV, syphilis, and gonorrhea diagnoses and their sexual partners to ensure linkage to treatment. These programs serve all of Iowa, including 1 large urban area (Des Moines, Iowa, population 682 000), 8 small urban areas with populations of 50 000-350 000, and all surrounding rural areas (ie, nonmetropolitan counties with populations <50 000) across the state.
In 2017, these programs began screening all clients for PrEP indications and referring those with need to a centralized telephone PrEP navigator. The navigator assisted clients in obtaining health insurance benefits and other resources and referred clients to community health care providers offering PrEP in Des Moines and 4 small urban areas, or to Iowa TelePrEP, a telehealth program for PrEP. 21 Iowa TelePrEP services became available in increasingly large areas of Iowa during 2017-2018 and served all of Iowa by January 2019.
To address gaps in knowledge about PrEP initiation outside large cities in the United States, we conducted a prospective cohort study that enrolled public health clients with PrEP indications in HIV testing and DIS/PS programs serving small urban and rural settings in Iowa. We aimed to determine the proportion of public health clients who started PrEP within 30 days of public health contact and client characteristics (ie, demographic characteristics; HIV risk factors; knowledge, attitudes, and beliefs about PrEP; and perceived stigma related to PrEP) associated with PrEP initiation.
Methods
Participants
We recruited participants from 11 HIV testing and 12 DIS/PS programs in Iowa from February 1, 2018, through February 28, 2019. As part of routine activities, public health personnel in DIS/PS and HIV testing programs screened clients with negative HIV tests for PrEP indication using a standardized set of questions. Clients with PrEP indication were referred to a PrEP navigator who then contacted clients by telephone to discuss PrEP services followed by referral to health care providers. In general, a client was referred for PrEP if any 1 of the following criteria were present: (1) a male who was sexually active with other male partner(s) in the past 6 months, not in a monogamous partnership with a recently tested HIV-negative male, and reporting anal sex without condoms in the past 6 months, any STI in the past 6 months, or a relationship with any HIV-positive partner; (2) a sexually active heterosexual male or female not in a monogamous relationship with an HIV-negative partner and reporting either condomless sex with partners of unknown HIV status at high risk for HIV infection or an ongoing sexual relationship with an HIV-positive partner; or (3) a person who used intravenous drugs in the past 6 months and reported sharing drug equipment, receiving methadone or buprenorphine in the past 6 months, or indicating risk of sexual acquisition of HIV.
In addition to referral to PrEP services, public health personnel separately referred PrEP-eligible clients to research team members for enrollment in this study. Study eligibility criteria were the following: aged 18-70; Iowa resident; and considered at risk for HIV and, therefore, referred for PrEP by a public health employee. Exclusion criteria were self-reported current PrEP use, self-reported inability to complete study tasks, or HIV-positive status.
Recruitment: Strategy 1
Because of the geographically dispersed network of public health departments, recruitment into the research study was originally conducted remotely. When a public health employee interacted with a person with PrEP indications, they asked for permission to share the potential participant’s contact information with the research team to be contacted later via telephone, text message, or email. If the potential participant did not want his or her contact information shared with the research team, the employee would provide the client with a flyer about the study to permit contact with the research team for more information. This remote strategy resulted in slow enrollment, with only 18 participants enrolling in the study in the first 4 months of recruitment.
Recruitment: Strategy 2
To speed up recruitment, we modified enrollment to allow research team members to travel to HIV and STI testing sites with public health employees. If a potential participant was identified while a research team member was on site, the public health employee would direct the person to the research team member for screening and enrollment via REDCap surveys.
Data Collection
After consent, participants completed a baseline survey consisting of 38 questions (supplementary survey materials available from the authors upon request). Participants completed the baseline survey in person (if the participant was enrolled in person and had time to complete the baseline survey) or electronically (if the participant was enrolled remotely or if the participant was enrolled in person but did not have time to complete the survey in person). If the survey was not completed electronically within 7 days, a research team member sent a second email with a link to the survey. If the survey was still not completed within a few days, a research team member made a third reminder contact via telephone call or text message, depending on participant preferences.
Baseline survey questions covered age; race/ethnicity; county of residence; sex assigned at birth; gender identity; sexual history; previous drug use; previous STIs; PrEP experiences; knowledge, attitudes, and beliefs about PrEP; and perceived PrEP-related stigma. The research team adapted questions from previous studies 22,23 and included a series of questions about PrEP effectiveness and perceived PrEP-related stigma in the context of health care providers (eg, “How concerned are you about bringing up the topic of PrEP with a physician?”) and friends/family/partners (eg, “How concerned are you about friends/family/partners finding out that you are taking PrEP?”). Items also addressed beliefs that PrEP may cause riskier sex or is for promiscuous people (eg, “PrEP will cause people to have more risky sex”). Supplementary survey materials are available from the authors upon request.
We used responses to create a summary variable for PrEP indication category following Centers for Disease Control and Prevention PrEP guidelines: (1) MSM with additional risk factors, (2) heterosexual men and women with additional risk factors, (3) people who use intravenous drugs and share needles, and (4) unclear indication (ie, referred to study by public health personnel based on assessed eligibility for PrEP, but self-reporting no sexual partners or needle sharing in past 6 months on baseline survey). We used self-reported information on county of residence and urban influence codes created by the Economic Intelligence Service of the US Department of Agriculture 24 to classify participant residence as (1) large urban if in a metropolitan area of population >350 000 (ie, Des Moines, Iowa, metropolitan area, population 682 000); (2) small urban if in 1 of the 8 metropolitan areas in Iowa with population 50 000-350 000; or (3) rural if in a nonmetropolitan county with population <50 000.
Thirty days after enrollment, a research team member emailed participants with a link to a follow-up survey consisting of 9 questions (supplementary survey materials available from authors upon request). These questions asked whether the participant had scheduled an appointment with a PrEP provider, met with a PrEP provider, received a prescription for PrEP, and started taking PrEP. Participants who did not complete the follow-up survey within 7 days received a second email with another link to the survey. If the survey was incomplete within a few days, study personnel made a third contact reminder via telephone call or text message. We used survey responses to determine PrEP initiation—the primary outcome variable—which we defined as any health care provider visit to discuss and obtain a prescription for PrEP within 30 days of public health referral. A prescription for PrEP was required to meet our definition of PrEP initiation. A portion of respondents accessed PrEP via TelePrEP, a telehealth-based PrEP delivery intervention in Iowa, which is described elsewhere. 21
Statistical Analysis
We generated descriptive statistics for participant characteristics and used t tests or Pearson χ2 tests as appropriate to determine significant differences in baseline characteristics, with P < .05 considered significant, by (1) response group (ie, completion of 30-day follow-up survey) among people who completed the baseline survey and (2) PrEP initiation among people who completed the follow-up survey. We did not conduct multivariable analyses because of small sample size, low number of PrEP initiators, and quasi-complete separation of the data. Because the geographic area covered by TelePrEP increased progressively during the course of the study, it was not possible to examine associations between living in an area served by TelePrEP and PrEP initiation. The University of Iowa Institutional Review Board approved all procedures.
Results
Two hundred thirty-four people consented to participate in the study from February 1, 2018, through February 28, 2019, and 189 (80.8%) completed the baseline survey (Figure). The mean age (SD) [range] of people who completed the baseline survey was 30.0 (12.0) [18-68], 109 (57.7%) were male, 127 (67.2%) were White, and 169 (89.4%) lived in a rural or small urban area. Among those who completed the baseline survey, 117 (61.9%) completed the 30-day follow-up survey.
Enrollment in a study of preexposure prophylaxis (PrEP) initiation in rural and small urban areas in Iowa, 2018-2019. “Remote referral” refers to contact made by telephone, text message, or email.
Comparison of Follow-up Survey Respondents and Nonrespondents
Follow-up survey respondents and nonrespondents reported similar age, sex assigned at birth, gender identity, health insurance status, residence (ie, rural/small urban/large urban), and number of partners and STIs in the previous 6 months (Table 1). Respondents were significantly more likely than nonrespondents to be White (76.1% vs 52.8%, P = .01) and to report ≥some college (69.2% vs 45.8%, P = .003). More respondents than nonrespondents were MSM (31.6% vs 13.9%, P = .06), enrolled remotely rather than in-person (28.2% vs 4.2%, P < .001), and referred by DIS/PS program personnel (vs HIV CTR) (12.8% vs 4.2%, P = .049). Only 1 person in each group reported using intravenous drugs, both of whom were also MSM with PrEP indications; no respondents reported using intravenous drugs with no additional PrEP indications. No transwomen responded to the survey.
Characteristics and behaviors of respondents and nonrespondents to a survey on preexposure prophylaxis (PrEP) initiation (N = 189), based on responses to a follow-up survey (n = 117), Iowa, 2018-2019 a
Abbreviations: DIS/PS, disease intervention specialist/partner services; GED, general educational diploma; MSM, men who have sex with men; SD, standard deviation; STI, sexually transmitted infection.
aAll values are number (percentage) unless otherwise indicated.
bUsing the t test or Pearson χ2 test as appropriate, with P < .05 considered significant.
cEnrolled by telephone, text message, or email.
d“Large urban” refers to a metropolitan area of population >350 000, small urban if in 1 of the 8 metropolitan areas in Iowa with population 50 000-350 000, and rural if in a nonmetropolitan county with population <50 000.
Comparison of PrEP Initiators and Non-initiators
Fifteen of 117 (12.8%) people who completed the follow-up survey reported PrEP initiation within 30 days (Table 2), 7 of whom used TelePrEP. Participants who initiated PrEP within 30 days were significantly more likely than participants who did not initiate PrEP to enroll in the study remotely rather than in person with a research team member (53.3% vs 24.5%, P = .02) and to have been referred by DIS/PS rather than an HIV testing program (46.7% vs 7.8%, P < .001). Compared with participants who did not initiate PrEP, participants who initiated PrEP were also significantly more likely to be MSM (80.0% vs 24.5%, P < .001) and to report having an STI in the past 6 months (33.3% vs 6.9%, P = .02).
Participant characteristics and behaviors of preexposure prophylaxis (PrEP) initiators and non-initiators (N = 117), Iowa, 2018-2019 a
Abbreviations: DIS/PS, disease intervention specialist/partner services; GED, general educational diploma; MSM, men who have sex with men; SD, standard deviation; STI, sexually transmitted infection.
aAll values are number (percentage) unless otherwise indicated.
bUsing the t test or Pearson χ2 test as appropriate, with P < .05 considered significant.
cEnrolled by telephone, text message, or email.
d“Large urban” refers to a metropolitan area of population >350 000, small urban if in 1 of the 8 metropolitan areas in Iowa with population 50 000-350 000, and rural if in a nonmetropolitan county with population <50 000.
Thirteen of 15 people who initiated PrEP recognized that PrEP was ≥90% effective when adherent; of 102 participants who did not initiate PrEP, 36 (35.3%) knew PrEP was ≥90% effective and 57 (55.9%) did not know how effective PrEP was (Table 3). None of 15 people who initiated PrEP and 8 of 102 (7.8%) who did not initiate PrEP agreed that PrEP is for people who are promiscuous (P = .04).
Participant knowledge, attitudes, and beliefs about preexposure prophylaxis (PrEP) (N = 117), based on initiation and non-initiation of PrEP, Iowa, 2018-2019 a
aAll values are number (percentage) unless otherwise indicated.
bUsing the t test or Pearson χ2 test as appropriate, with P < .05 considered significant.
We found no significant differences between groups in perceived stigma of PrEP in health care settings; stigma related to friends, family, or partners knowing about PrEP use; or beliefs that PrEP causes riskier sexual practices (Table 3). Most people who did and did not initiate PrEP reported little concern about feeling stigmatized in health care settings when discussing their sex life and the topic of PrEP with a health care provider or listing PrEP as a medication. Similarly, people who did and did not initiate PrEP expressed little concern about stigma from friends, family, or sexual partners related to PrEP use.
Discussion
Most information about PrEP initiation in the United States comes from studies in large urban areas. 10,11 Our study adds to the literature by reporting rates and predictors of PrEP initiation among public health clients in rural and small urban settings in Iowa. Of 189 people who completed the baseline survey, 117 completed a follow-up survey at 30 days, representing a nearly 40% attrition rate between baseline and follow-up. This attrition rate highlights the challenges inherent in enrolling study participants among PrEP-eligible public health clients in geographically dispersed rural and small urban communities and in following these participants over time. PrEP initiation 30 days after public health referral was modest (about 13%) but similar to estimates of PrEP use among people with indications for PrEP use in the general US population (ie, ≤10%). 7 -9 This finding further highlights the need for interventions to improve PrEP uptake among public health clients in rural and small urban areas. 25
We made several important findings about PrEP uptake. First, compared with participants who did not initiate PrEP, participants who initiated PrEP within 30 days were significantly more likely to be MSM, which aligns with national data on PrEP use among groups at high risk of HIV infection. 26 This finding may be partially a function of increased awareness via PrEP coverage in the media and targeted public health messaging on geospatial networking applications (eg, Grindr, Scruff), which tend to focus on homosexual men. 27 Although targeted campaigns to raise awareness among MSM make sense given that HIV infection rates among this group are high, 28 other groups at risk of HIV infection may be less likely than MSM to engage in PrEP as a result, perhaps linked to the stereotypical presentation of HIV risk across media platforms. 29
Second, people initiating PrEP were more likely to be referred via DIS/PS than by HIV testing programs. People interacting with DIS/PS programs were likely at the highest risk of contracting HIV infection because of recently diagnosed bacterial STIs and/or having a known partner with a recent diagnosis of HIV infection, demonstrating a strong indication and potentially high motivation for starting PrEP. Similarly, interactions with DIS/PS personnel may have increased clients’ perceived HIV susceptibility, which could have influenced PrEP initiation. 30 In these cases, public health contacted the client—rather than the client seeking services—which may have increased uptake to some degree.
Third, significantly more people who initiated PrEP than did not initiate PrEP knew PrEP was ≥90% effective with high adherence. More than half of people who did not initiate PrEP indicated not knowing how effective PrEP was given choices ranging from <20% effective to ≥90% effective. This finding suggests a need for increased education and public awareness campaigns to increase knowledge of PrEP effectiveness in rural and small urban settings, which may contribute to increased PrEP uptake over time. A 2020 qualitative study of barriers and facilitators to PrEP for rural MSM in the Midwest also found a need for increased awareness of PrEP, particularly via public-facing media such as radio and television. 31
Fourth, although stigma may manifest in many ways, this predominantly rural and small urban sample reported low levels of concern about some aspects of stigma concerning PrEP, including discussing PrEP with health care providers and friends, family, or partners discovering PrEP use. Both PrEP initiators and non-initiators expressed low levels of concern in these areas, which may have been affected by survey nonresponse. This low level of concern is counter to some evidence about stigma related to PrEP but aligns with recent research from 2020 that found that clients attending public health clinics in southern Arizona reported low levels of concern about friends and family knowing of PrEP use. 32 However, PrEP initiators in our study were less likely than PrEP non-initiators to believe that PrEP use indicates promiscuity. PrEP non-initiators may have felt subject to “PrEP shaming,” in which people considering or taking PrEP are stigmatized because of assumptions of HIV-positive status and/or presumed promiscuity, in some communities. 23,33,34 Efforts by trusted others—such as friends, family, and community leaders—to increase PrEP awareness and reduce stigmatization may improve PrEP uptake. 32
Limitations
This study had several limitations. First, a substantial number of participants were lost from baseline to 30-day follow-up despite multiple attempts to maintain contact, which may have introduced bias in the results reported here. Second, the number of PrEP initiators, although similar to that reported in the general population, was low. This finding highlights the need for additional research on psychosocial and systems barriers to improve uptake. 26,35 Moreover, it is important to consider how previous interventions in urban areas may translate to the rural and small urban context. Consideration of previous interventions for rural and small urban areas could include same-day PrEP initiation, which links clients to PrEP at the time of HIV testing or STI diagnosis, and could be delivered as a telePrEP intervention in rural public health settings where it is not possible to prescribe PrEP on site. 36 Third, our data should be interpreted with caution given the potential for nonresponse bias and confounding as a result of unmeasured variables, which may be differentially distributed between these groups. Fourth, county-level measures of rurality may not be precise and may misclassify rural areas within a predominantly urban county. Measures based on smaller geographic units, such as census tracts or zip codes, are likely more precise than county-level measures. 37 Finally, we did not have data on PrEP adherence beyond initial uptake and, thus, cannot speak to factors associated with continuous use over time, which is important for future intervention design. 38
Conclusion
This study highlights several factors associated with PrEP uptake among public health clients in rural and small urban areas in Iowa. In particular, we found a lack of knowledge about PrEP effectiveness, which was associated with low rates of PrEP use. Our findings add to a growing body of research about factors associated with PrEP use in large urban areas. Future research should focus on education and awareness of PrEP effectiveness, with an eye toward intervention development to improve linkage to PrEP and examine uptake and adherence over time in rural and small urban areas.
Footnotes
Authors’ Note
The views expressed in this article are those of the authors and do not necessarily represent the views of the National Institutes of Health or the US Department of Veterans Affairs.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by an Investigator Sponsored Research Award from Gilead Science (Ohl PI, IN-US-276-4448). Research reported in this article was also supported by the National Center for Advancing Translational Sciences of the National Institutes of Health under award number UL1TR002537.
