HIV Pre-Exposure Prophylaxis and Women: Survey of the Knowledge,Attitudes,and Beliefs in an Urban Obstetrics/Gynecology Clinic

Introduction

The HIV continues to be a public health problem in the United States with 37,600 persons receiving a new diagnosis of HIV in 2014. ¹ Data from 2010 to 2011 indicated that 1 in 5 new HIV diagnoses in the United States occurred in women. ^2,3 Racial and ethnic disparities are associated with risk of HIV acquisition, as 61% of the 7402 diagnoses among women in 2015 occurred among African American and African Caribbean people, which translate into a 16 times higher incidence of HIV in black women when compared to white women. ²

While treatment of HIV with highly active antiretroviral therapy is a mainstay of HIV prevention, HIV pre-exposure prophylaxis (PrEP) is also an essential component of HIV prevention. In one intention-to-treat analysis of HIV-negative heterosexual men and women from Botswana, there was a 62.2% decrease in HIV incidence in patients taking PrEP compared to placebo. ⁴ The partner PrEP trial provided further evidence regarding the efficacy of PrEP to reduce HIV incidence among women in serodiscordant heterosexual relationships. This study, conducted in Kenya and Uganda, showed a 90% reduction in HIV incidence among individuals who had detectable blood levels of the medications in PrEP, compared to placebo. ⁵ A World Health Organization meta-analysis published in 2015, which examined a number of different studies about PrEP efficacy, showed an overall 43% risk reduction in HIV acquisition in women taking oral PrEP. ^6,7

In 2012, the Food and Drug Administration (FDA) first approved the use of daily oral tenofovir disoproxil fumarate combined with emtricitabine (TDF-FTC, Truvada^©) as a PrEP agent for eligible populations. ^8,9 These studies led the Centers for Disease Control and Prevention to recommend PrEP among at risk populations. ⁸ The US Public Health Service Guidelines recommend that women who have any of the following are at substantial risk for HIV acquisition and would benefit from PrEP: (1) had a recent bacterial sexually transmitted infection, (2) had a high number sexual partners, (3) had a history of inconsistent or no condom use, (4) engaged in commercial sex work, (5) lived within a high-prevalence area of HIV, or (6) have been sexual partners of people living with HIV. ^6,8,10

PrEP is one of few options women have to protect themselves from HIV acquisition that does not require partner cooperation. This effect may be especially important among women exposed to intimate partner violence (IPV). Women experiencing IPV are at higher risk of acquiring HIV and may be exposed to violence when requesting partner cooperation with condom use. ¹¹ PrEP may also allow for safer conception for serodiscordant heterosexual couples. In one qualitative interest group study, couples stated their desire to conceive safely, but naturally. PrEP use gave couples confidence in their ability to conceive safely, while strengthening their relationship. ¹²

For PrEP to prevent new HIV infections, patients must be knowledgeable about the existence of PrEP, know how to access it, and adhere to it once prescribed. Unfortunately, national statistics do not show a robust uptake of PrEP among eligible women. A recent study estimated that 468,000 women in the United States may benefit from PrEP use, but only 10,000 unique women had filled prescriptions for PrEP through the third quarter of 2015. ¹⁰ These data demonstrate an increased need for HIV prevention efforts among women, and must be studied further. ^2,10

There are little data examining women's knowledge, attitudes, and beliefs toward PrEP. One small qualitative focus group study in 2013 showed that <10% of women had heard about PrEP, although this study was conducted shortly after the initial FDA approval. Many women expressed anger that they had not been previously informed about PrEP and would be willing to consider taking medications with minimal side effects if offered free of charge and prescribed by a trusted provider. ¹³

In 2016, 24% of new HIV diagnoses in Philadelphia occurred in women. ¹⁴ The Philadelphia Department of Public Health showed that 5378 women were living with HIV in 2016, with black women accounting for 3918 (72.8%) of cases. Within women's health care, there exists an opportunity to improve women's knowledge and access to HIV prevention services. A committee opinion from the American College of Obstetricians and Gynecologists (ACOG) emphasizes that obstetricians/gynecologists (Ob/Gyn) play an important role in prescribing PrEP for women, but disparity of PrEP knowledge and uptake exists both among patients and prescribers. ^3,6,15 Therefore, this survey-based study was performed to determine the knowledge, attitudes, and beliefs among women at a family planning gynecology office at Temple University Hospital, which has an Emergency Department HIV prevalence rate of 4%, and a zip code rate of 2336 diagnosed cases of HIV per 100,000 people. ^16,17

Methods

The Institutional Review Boards of both Temple University (Philadelphia, PA) and Access Matters, a Title X funder of the Family Planning Clinic of Temple University Hospital, approved this study. Women attending a Temple University Hospital family planning gynecology clinic were screened for survey participation from June 1 to December 31, 2017. All women who presented for a gynecology appointment during the study time period were considered for inclusion. Women <18 years of age, living with HIV, or currently pregnant were excluded. Surveys were only available in English. The short, anonymous, 11-question multiple-choice survey was adapted from a previous focus group study examining PrEP knowledge and attitudes in women. ¹³ The survey asked participants to estimate their perceived HIV risk, followed by 8 questions about knowledge, attitudes, and beliefs regarding PrEP. Two demographic questions were included to assess participants' age and ethnicity. Participants who had previously heard about PrEP were asked when and where they had heard about PrEP. Women who stated that they felt comfortable discussing pharmacologic prevention of HIV with a provider were given the opportunity to list which provider (by role) they would trust. Women could opt out of any individual question. Any survey with greater than half of questions unanswered was excluded from analysis.

Women were approached by a survey administrator who explained the risks, benefits, and methods of participating in the survey. Verbal consent was obtained and surveys were self-administered and given a sequential numerical identifier. No personal identifying information was collected during survey administration. Study data were collected and managed using REDCap electronic data capture tools hosted at Temple University. ¹⁸ Upon completion of data collection, descriptive statistics were used to summarize results.

Results

In total, 421 surveys were administered. Twenty-one surveys were excluded from respondents <18, living with HIV, or who were pregnant. Eleven surveys with >50% incomplete answers were also excluded. Therefore, 389 completed surveys of eligible women from a family planning obstetrics/gynecology office were included to assess the knowledge, attitudes, and beliefs about PrEP. Table 1 lists demographic data. Ages of the women surveyed ranged from 18 to >65. The most frequently observed age range was 18–25 years (157, 41.1%) and approximately three-quarters of our interviewed population were between the ages of 18–33 years (280, 73.3%). The surveyed population was largely represented by black women (250, 64%) and Latinas (73, 19%), while mixed-race Latina (26, 7%), Caucasian (12, 3%), and Asian/Pacific Islander (4, 1%) were less well represented.

Regarding the women's perception of HIV acquisition risk, 385 women responded to this question (Fig. 1). On a Likert scale of 0–5 (0 defined as lowest risk and 5 defined as highest risk), 224 (58%) responded that they had 0 risk of acquiring HIV, while 24 (6%) thought they were at highest risk of acquiring HIV. Of the remaining surveys, 58 (15%) chose 1, 33 (8%) chose 2, 38 (10%) chose 3, and 8 (2%) chose 4 as their perceived risk of HIV.

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FIG. 1.

Perceived risk of HIV acquisition by survey respondents using a Likert scale, Philadelphia, 2017.

Table 2 summarizes women's knowledge, attitudes, and beliefs regarding PrEP for HIV prevention. Two questions were used to assess women's knowledge of HIV prevention. The first question asked if the only way to prevent HIV is with barrier protection (condoms). A total of 386 women responded to this question. Sixty-six percent (256) of women responded that, yes, condoms are the only way to prevent HIV, while 30% (115) responded no, and 4% (15) were unsure. The second question assessed if women were aware that there are medications used to prevent HIV. A total of 387 women responded to this question. Twenty-seven percent (104) responded that yes, there are medications to prevent HIV, while 39% (150) responded no, and 34% (133) were unsure. Of the women who responded positively that they were aware of PrEP, two free-text follow-up questions were asked: where and when the participant had first heard about PrEP. Seventy women responded to where she had first heard about PrEP. More than half of respondents (28, 56%) demonstrated that they had learned of PrEP from a medical professional; 11 specifically indicated that her Ob/Gyn informed her. The remaining responses were as follows: 20% (14) of women knew of PrEP from word of mouth, 19% (13) from media campaigns, and 6% (4) from education at school. The follow-up question of when respondents had first heard about PrEP elicited 55 responses. Thirty-one percent (17) were unable to report when they first heard about PrEP, but 27% (15) reported hearing of PrEP within the 2–12 previous months, 25% (14) had heard about PrEP within the past 30 days, 9% (5) heard of PrEP between 1 and 2 years prior, and 7% (4) heard of PrEP 2 and 3 years before the survey.

Three questions were used to assess the women's beliefs about pharmacologic HIV prevention. The first question asked if women believed that a daily medication to prevent HIV would actually prevent HIV. A total of 387 women completed this question. Thirty-three percent (128) believed that yes, a medication would actually prevent HIV, while 33% (127) believed no, it would not be effective, and 34% (132) were unsure. The second question assessing belief about the cost of preventative HIV medications elicited 386 responses. Forty-four percent (170) of women believed a medication to prevent HIV would be expensive, while 8% (31) did not believe so, and 48% (185) did not know. Finally, women's beliefs about side effects of preventative HIV medications were assessed. Of the 387 who responded, 57% (220) believed that medications to prevent HIV would have many side effects, while 6% (22) did not believe so, and 55% (213) were unsure.

Three questions were used to assess women's attitudes toward taking pharmacologic HIV prevention. The first question inquired if women feel/would feel comfortable talking to their medical provider about medications to prevent HIV. Of the 385 women who responded, 64% (250) acknowledged comfort with this discussion, while 14% (55) did not feel comfortable, and 20% (80) were unsure if they would feel comfortable talking to their physician about this subject. As a subquestion, there was a free-text option to allow women to respond with which provider they feel comfortable discussing pharmacologic HIV prevention. Of the 153 responses, 67% (102) of women felt they would be comfortable discussing this subject with their Ob/Gyn, while 24% (36) expressed feeling comfortable with their primary care provider, and 10% (15) reported that she would feel comfortable with any provider. The second question assessed if women would take a medication every day to prevent HIV. Of the 386 women who responded, 57% (220) agreed that they would take a medication daily to prevent HIV, while 21% (81) would not, and 22% (85) were unsure if they would adopt such a strategy. The final question assessed if women knew of anyone already taking medications to prevent HIV. Of the 383 who responded, 5% (19) did know someone on PrEP, while 66% (258) did not, and 27% (106) were unsure.

Discussion

These data represent the largest description to date of the knowledge, attitudes, and beliefs among women living in the United States toward PrEP. It is apparent that more than half of the women surveyed do not perceive themselves at risk for HIV acquisition, despite the high levels of local HIV prevalence. When low levels of self-perceived risk are combined with the data from the HIV knowledge assessment questions, it is clear that this population is in need of HIV prevention education.

The beliefs of surveyed women toward PrEP indicate significant concern toward side-effects and cost. These data concur with responses from focus groups among women conducted by Auerbach et al., ¹³ regarding side effects and cost-perceived barriers to the uptake of PrEP. The focus group participants in the Auerbach et al. ¹³ study discussed that PrEP would have to be covered under health insurance to resolve the concerns of medication cost. In reality, PrEP can be obtained for little or no cost through manufacturer copayment assistance, or programs for those who are minimally insured or uninsured. The surveyed women in our study were concerned about the side effects of PrEP, but side effects (e.g., headache, nausea, or flatulence) are uncommon and generally resolve within the first month of treatment. ⁸ This demonstrates a significant gap in awareness that can be mitigated by patient education from medical professionals or public health campaigns. Of note, only 32.9% of respondents believed in the efficacy of PrEP, again illustrating the need for directed outreach toward women, combining information on HIV prevention strategies with real-world efficacy results.

Despite gaps in self-perceived HIV risk, lack of knowledge regarding PrEP, and negative attitudes toward cost and concern of potential adverse effects, the majority of participants responded that they would initiate a medication to prevent HIV. Before PrEP's approval by the FDA, Wingood et al. ¹⁹ conducted a national, randomized telephone survey to determine the likelihood of PrEP adoption among women. African American woman were 1.76 times more likely to adopt PrEP compared to white women. ¹⁹ Given the significantly higher rate of HIV acquisition among black women compared to white women, our data (which include a predominance of black women) add to existing data for the implementation and acceptability of PrEP. Promotion of PrEP for women is especially important, as it is a method of empowering women to protect themselves. Women's use of PrEP does not require partner cooperation and could lead to less exposure to IPV. ¹¹

Health professionals for women are well poised to offer PrEP services and are encouraged to do so by the ACOG committee opinion. ³ The medical providers noted by our patients, with whom they feel most comfortable discussing PrEP, are Ob/Gyn and Primary Care Providers. Smith et al. ¹⁵ have conducted annual national surveys of PrEP awareness among primary care providers and Ob/Gyn. In 2015, 65% of providers reported hearing of PrEP, compared to only 25% of providers surveyed in 2009. ¹⁵ Provider awareness of PrEP is increasing, but progress is still necessary to convey that knowledge to patients.

This study is not without limitations as it was both single-centered and provided in one language (English), but does present the largest volume of North American-based data on this subject. This gynecology office, in particular, had been the site of a previously described PrEP education pilot. Within this pilot, in-person counseling for interested individuals was conducted with posters and flyers displayed for additional patient education. This may explain why most survey respondents learned of PrEP within the prior 12 months and would prefer to discuss PrEP with their Ob/Gyn provider. ²⁰ Thus, these data may overestimate general knowledge of PrEP among patients and bias toward Ob/Gyn providers.

Another limitation of this study is the lack of data regarding knowledge about PrEP among transwomen. Transwomen have a disproportionately high HIV prevalence of 19% worldwide, although incidence of new infections has plateaued in the United States. ²¹ A study conducted among transwomen in San Francisco showed that only 42.7% of respondents had heard about PrEP, but 73.9% would be willing to take PrEP. ²¹ Our study did not address knowledge and attitudes regarding PrEP for transwomen, and more research is needed to expand PrEP as an option for this population.

PrEP is not fully utilized by women who are eligible for it. ^2,3,6,10 It has been noted that both social and structural factors, for example local HIV/sexually transmitted infection prevalence, gender inequality, racism, poverty, and inequality of health resources contribute to HIV acquisition risk. ^22,23 The knowledge, attitudes, and beliefs of PrEP among women are discordant with their HIV risk and potential for PrEP adoption. The goal of PrEP is to diminish transmission of HIV; therefore, it is incumbent among public health educators to expand the PrEP prevention message to include women. While jurisdictional public health campaigns have been used to increase HIV prevention awareness, messaging of PrEP may not be directed toward or received by women. To limit the disparity in PrEP knowledge and uptake, further research is needed to understand how best to educate women of their HIV risk and engage them in all available HIV prevention strategies.