PrEP Needs Assessment: A Quantitative Patient Survey Report

A PDF version of this entry is available for viewing and download here

Introduction

Pre-Exposure Prophylaxis (PrEP) is a once-daily prescription medicine, approved by the US Food and Drug Administration (FDA) in July 2012, that can help HIV-negative individuals reduce their risk of acquiring HIV when it is taken every day and used together with safer sex practices.

PrEP is endorsed by the US Centers for Disease Control and Prevention (CDC) as a science-driven public health approach to what remains a major health crisis in the United States. Used along with other preventive strategies, PrEP has the potential to help individuals at risk for HIV infection to protect themselves and, ultimately, to reduce HIV incidence. However, implementation of PrEP has been relatively slow to date and faces numerous and multifactorial barriers, as detailed below.

This piece is part of an ongoing needs/gap assessment evaluating barriers and unmet needs in HIV PrEP implementation as a part of an overall HIV prevention strategy. It is based on a quantitative survey, administered online from July 3 to July 21, 2017 using SurveyMonkey[TM]. The survey gathered attitudes toward and knowledge of PrEP for HIV prevention among people who use PrEP and people who do not use PrEP but who may be at risk for HIV.

Other needs assessment entries will detail findings of a literature review, qualitative surveys of clinicians and patients, and a quantitative survey of healthcare providers.

This needs assessment is part of a larger initiative called Let’s Get Real About PrEP provided under the auspices of Albert Einstein College of Medicine and NovaMed Education Inc. with program contribution from HealthHIV. This program is supported by an educational grant from Gilead Sciences. 

Dr. Bisola Ojikutu of Harvard Medical School and Dr. David Hardy of Whitman-Walker Health provided technical development advice and review of the survey and its findings. 

Summary Findings

  • 104 individuals responded to the online survey
  • Approximately half of respondents are White, gay men, aged 26-63 who are sexually active and currently taking PrEP
  • 98% of respondents are regularly engaged in healthcare and have trusting relationships with a primary care provider (PCP)
  • Respondents believe patients should have increased access to PrEP and patients are capable of staying up-to-date with the routine medical care associated with taking PrEP
  • PrEP’s cost is of significant concern to PrEP users, but they have a low level of concern about side effects or HIV resistance
  • All survey respondents report having heard of PrEP, indicating they are more PrEP-literate than the general population
     

Demographics

74% of respondents are cis-male, 22% are cis-female, 2% are genderqueer, and 1% are trans-female. 70% identify as homosexual or gay, 9% identify as queer, and 5% as bisexual, 1% identify as Lesbian and 20% identify as straight (responses exceed 100% because respondents could answer more than one category).

 

Survey respondents were predominantly white, but racial and ethnic minorities were represented among the respondents, as shown in the chart below. 82% of female participants are straight/heterosexual and 3% of male respondents are heterosexual.

99% of respondents have their high school diploma or GED. 42% reported that their highest level of education was a graduate or professional school degree, and 34% reported that their highest level of education was an associates or baccalaureate degree. 88% are currently employed and 96% have a primary care provider (PCP) who is an MD/DO/NP/PA. 73% receive their routine medical care in a private doctor’s office and 12% go to urgent care facilities for their medical advice. 84% of respondents have had a routine checkup in the past year and all respondents have had a checkup within the past 5 years.

Provider Relationships

Over 71% of respondents’ PCPs have ever asked about sexual activity, and 88% of respondents are comfortable discussing HIV risk factors like sexual activity or drug use with their provider. However, 32% report that their PCP does not regularly ask them about their sexual history, a notable deficit. Half of all respondents have discussed PrEP for prevention of HIV with their PCP.

95% of non-PrEP respondents reported feeling comfortable discussing HIV risk factors, including sexual behavior, with their PCP versus 84% of PrEP users. However, only 54% of non-PrEP users indicated that their PCP asked about their past sexual activity versus the 86% of PrEP respondents who have discussed sexual behaviors with their providers. 10% of all respondents report not trusting their PCP to be nonjudgmental when discussing sexual or drug related behaviors. 89% of all respondents trust their PCP to provide them with the best care and 71% trust that their PCP is up to date on the latest HIV prevention methods to give advice based on evidence-based strategies.

Among women, PCPs have ever asked only 35% of respondents about their sexual history, and 15% have ever discussed PrEP as an option for HIV prevention. 71% of female respondents trust their providers not to judge them when discussing sexual or drug-related behaviors. PCPs regularly ask only 24% of female respondents about their sexual history.

 In addition to the gap between male and female respondents in their discussion of sexual history with their PCPs, the 10% of all respondents who do not trust their provider to be nonjudgmental and the 32% of all respondents with PCPs who do not regularly ask about sexual history indicate a significant number of missed opportunities to provide effective STI and HIV prevention. Male respondents indicated that they would prefer having an LGBT or HIV specialist as their PrEP provider, and female respondents ranked nurse practitioners as their top preferred PrEP provider.

PrEP and Behaviors

69% of all male respondents and 70% of those who identify as gay have taken PrEP.

 

 

 

 

62% of all White respondents and 70% of all White male respondents have taken PrEP. 12% of all Black/African American respondents have taken PrEP. 50% of all Hispanic/Latino and 54% of Hispanic/Latino male respondents have taken PrEP. No heterosexual respondents report taking PrEP.

About half (47%) of Black respondents are heterosexual, compared with 13% of White respondents. Black/African-American respondents are more likely (41%) to report that their primary care provider is a specialist than White respondents (14%), and they are equally likely (68% vs 74%) to report going to a private doctor’s office when sick or in need of medical advice. There is no significant difference between Black and White respondents in reports of trusting their providers not to judge them (47% v 59%) and receiving routine preventative care (88% v 82%). Black/African American respondents are much less likely to report using PrEP (12%) than White respondents (61%). Given that 44% of new HIV infections occur in Black men, this finding indicates a gap in who is accessing PrEP. 

46% of non-PrEP respondents are female and 2% are transgender female. 46% of respondents not on PrEP are gay and 44% are heterosexual. Female respondents have fewer sexual partners on average than men; 58% of these women have one partner. Females’ most commonly used HIV prevention method is having a monogamous partner and 32% use condoms.

56% of male respondents use condoms and 44% discuss their STI or HIV status and history with partners. 57% of Black/African American respondents report using condoms, versus 47% of White respondents. 50% of White male respondents, 100% of Black male respondents, 38% of White female respondents, and 33% of Black female respondents use condoms. 

54% of respondents have taken PrEP, ranging in time duration from two weeks to five years. All respondents have heard of PrEP, and 51% have discussed it as an option for preventing HIV with their PCP. 77% of all respondents have been sexually active in the past year, defined as vaginal, anal or oral sex. 33% of PrEP respondents have had sex with 2-3 partners in the past month, versus only 13% of non-PrEP respondents. 53% of non-PrEP respondents have had sex with one partner in the past month. 1% of respondents have used injection drugs in the past month.

Interestingly, 50% of non-PrEP respondents report using condoms in the past year versus the 55% of PrEP users who have used condoms in the past year—which provides some insight into the question of risk compensation in this respondent group. PrEP-using respondents are also more likely to have disclosed their STD or HIV history and status to partners than non-PrEP users (53% versus 21%).

Views and Concerns

87% of all respondents agree that PrEP is effective in preventing HIV. 90% also agree that PrEP should be made more available and 94% believe that insurance companies should pay for PrEP.

 

 

66% of PrEP-using respondents and 56% of non-PrEP-using respondents believe that people on PrEP are concerned with practicing safe sex. 45% of PrEP users are unsure if people taking PrEP are more sexually active than those not taking PrEP, vs 52% of non-PrEP users. 63% of PrEP users vs 37% of non-PrEP users believe that PrEP is too expensive. 57% of respondents overall who believe PrEP users are more sexually active also agree that PrEP users are less concerned with practicing safe sex.

Generally, non-PrEP-using respondents were more likely to mark “neither agree nor disagree” when asked their opinion about various PrEP topics. 6% of PrEP users and 9% of non-PrEP users believe that PrEP care is “too complicated.”

Conclusion

Patient respondents regularly engage in their healthcare and have well-established relationships with their primary care providers. No female respondents have taken PrEP and one has taken non-occupational post-exposure prophylaxis (nPEP). PrEP-user opinions reflect those of respondents who are gay or genderqueer.

Black/African American respondents are far less likely to report using PrEP than White respondents. This suggests a gap in who is accessing PrEP, given that 44% of new HIV infections occur in Black men. 

Among non-PrEP users, just over half have ever been asked about their sexual history by their primary care provider. Among women, this number is only 35%, and under a quarter are regularly asked about their sexual history. Only 15% of women respondents have ever discussed PrEP with their PCP as an HIV prevention option. These are pronounced gaps and missed opportunities for discussions about sexual health in general, and HIV prevention in particular. 

Patients would like to see PrEP access expanded and note concern that it is too expensive. However, stigma still persists among many respondents who believe that PrEP users are less concerned with practicing safe sex, either because they do not believe that using PrEP is a method of practicing safer sex or they associate the term “safer sex” only with condom use.

These findings indicate that continued health education is needed to provide potential persons at risk for HIV with accurate and timely information about PrEP, including persons already aware of PrEP. Such information should address persisting opinions that stigmatize PrEP use and expand awareness of the HIV prevention methods available to patients. Primary care providers are essential to educating patients about PrEP, and all respondents who have had a discussion with their PCP about PrEP believe that it is effective at preventing HIV.

Copyright Albert Einstein College of Medicine and NovaMed Education Inc. 2017.