The Use of Online Posts to Identify Barriers to and Facilitators of HIV Pre-exposure Prophylaxis (PrEP) Among Men Who Have Sex with Men: A Comparison to a Systematic Review of the Peer-Reviewed Literature
Pre-exposure prophylaxis (PrEP) remains an under-utilized HIV prevention tool among men who have sex with men (MSM). To more comprehensively elucidate barriers and facilitators to PrEP use among US MSM, we conducted a systematic review of peer-reviewed published articles and content analysis of online posts about PrEP. We searched peer-reviewed databases (Medline, Web of Science, Google Scholar) using MESH headings and keywords about PrEP and/or HIV prevention from 2005 to 2015. We included original studies among MSM in the US that reported on barriers, facilitators, or other factors related to PrEP use. We also searched online posts and associated comments (news articles, opinion pieces, blogs and other social media posts) in diverse venues (Facebook, Slate Outward, Huffington Post Gay Voices, Queerty, and My PrEP Experience blog) to identify posts about PrEP. We used content analysis to identify themes and compare potential differences between the peer-reviewed literature and online posts. We identified 25 peer-reviewed articles and 28 online posts meeting inclusion criteria. We identified 48 unique barriers and 46 facilitators to using PrEP. These 94 themes fit into six overarching categories: (1) access (n = 14), (2) attitudes/beliefs (n = 24), (3) attributes of PrEP (n = 13), (4) behaviors (n = 11), (5) sociodemographic characteristics (n = 8), and (6) social network (n = 6). In all categories, analysis of online posts resulted in identification of a greater number of unique themes. Thirty-eight themes were identified in the online posts that were not identified in the peer-reviewed literature. We identified barriers and facilitators to PrEP in online posts that were not identified in a systematic review of the peer-reviewed literature. By incorporating data both from a systematic review of peer-reviewed articles and from online posts, we have identified salient and novel information about barriers to and facilitators of PrEP use. Traditional research approaches may not comprehensively capture current factors important for designing and implementing PrEP related interventions.
KeywordsPre-exposure prophylaxis HIV Men who have sex with men Barriers to care
We would like to acknowledge the Einstein-Montefiore Division of General Internal Medicine’s Qualitative affinity group for feedback on earlier versions of this manuscript.
Compliance with Ethical Standards
Conflicts of interest
Alisse Hannaford declares that she has no conflict of interest. Madeleine Lipshie-Williams declares that she has no conflict of interest. Joanna Starrels is funded by NIH Grant R01DA039046. Julia Arnsten declares that she has no conflict of interest. Jessica Rizzuto declares that she has no conflict of interest. Phillip Cohen declares that he has no conflict of interest. Damon Jacobs declares that he has no conflict of interest. Viraj Patel is funded by NIH Grant K23MH102118.
Our research did not involve human participants or animals.
- 1.Vital Signs: Estimated Percentages and Numbers of Adults with Indications for Preexposure Prophylaxis to Prevent HIV Acquisition—United States, 2015. 2015. https://www.cdc.gov/mmwr/preview/mmwrhtml/mm6446a4.htm.
- 2.Giler RM, Trevor H, Bush S, Rawlings K, McCallister S. Changes in truvada (TVD) for HIV pre-exposure prophylaxis (PrEP) utilization in the United States: (2012–2016). International AIDS Society Conference 2017. 2017.Google Scholar
- 8.Lai LSL, To WM. Content analysis of social media: a grounded theory approach. J. Elect Comm Res. 2015;16:138–52.Google Scholar
- 11.Consultants SR. Dedoose Version 6.1.18, web application for managing, analyzing, and presenting qualitative and mixed method research data Los Angeles, CA 2015.Google Scholar
- 13.Brooks RA, Landovitz RJ, Kaplan RL, Lieber E, Lee SJ, Barkley TW. Sexual risk behaviors and acceptability of HIV pre-exposure prophylaxis among HIV-negative gay and bisexual men in serodiscordant relationships: a mixed methods study. AIDS Patient Care STDs. 2012;26:87–94.CrossRefPubMedPubMedCentralGoogle Scholar
- 15.Cohen SE, Vittinghoff E, Bacon O, et al. High interest in preexposure prophylaxis among men who have sex with men at risk for HIV infection: baseline data from the US PrEP demonstration project. J Acquir Imm Defic Synd. 1999;2015(68):439–48.Google Scholar
- 16.Eaton LA, Driffin DD, Smith H, Conway-Washington C, White D, Cherry C. Psychosocial factors related to willingness to use pre-exposure prophylaxis for HIV prevention among Black men who have sex with men attending a community event. Sex Health. 2014;11:244–51.CrossRefPubMedPubMedCentralGoogle Scholar
- 17.Fuchs JD, Sobieszczyk ME, Madenwald T, et al. Intentions to use preexposure prophylaxis among current phase 2B preventive HIV-1 vaccine efficacy trial participants. J Acquir Imm Defic Synd. 1999;2013(63):259–62.Google Scholar
- 20.Golub SA, Gamarel KE, Rendina HJ, Surace A, Lelutiu-Weinberger CL. 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.CrossRefPubMedPubMedCentralGoogle Scholar
- 22.Hosek SG, Siberry G, Bell M, et al. The acceptability and feasibility of an HIV preexposure prophylaxis (PrEP) trial with young men who have sex with men. J Acquir Immune Defic Synd. 1999;2013(62):447–56.Google Scholar
- 36.Bill. (2014). My Prep Experience. Bill’s “Pretty Epic” PrEP Experience. http://myprepexperience.blogspot.com/2014/09/bills-pretty-epic-prep-experience.html.
- 37.Shane B. My prep experience. Gay couple don’t take “No” for an answer and successfully appeal insurance denial for PrEP. 2005. http://myprepexperience.blogspot.com/2015/01/gay-couple-dont-take-no-for-answer-and.html.
- 38.Chicago doctor. My Prep Experience. Chicago doctor: “I don’t always use condoms. And I don’t always top. I will not give this up.” 2014. http://myprepexperience.blogspot.com/2014/12/chicago-doctor-i-dont-always-use.html.
- 39.Dakota. My Prep Experience. Alabama firefighter, paramedic and “pitcher” goes on PrEP. 2015. http://myprepexperience.blogspot.com/2014/11/alabam-firefighter-paramedic-and.html.
- 40.Greg. My Prep Experience. Physician with Poz Partner Chooses PrEP. 2015. http://myprepexperience.blogspot.com/2014/11/physician-with-poz-partner-chooses-prep.html.
- 41.Dwayne H. My Prep Experience. Take control of your sexual health, and don’t be afraid to ask questions. 2015. http://myprepexperience.blogspot.com/2015/04/dwayne-in-atlanta-take-control-of-your.html.
- 42.Jeremy. My Prep Experience. SF Gaymer Jeremy on why he’s on PrEP. 2014. http://myprepexperience.blogspot.com/2014/09/video-sf-gay-mer-jeremy-on-why-hes-on.html.
- 43.K.W. My Prep Experience. Personal Story: I finally got up the courage to seek PrEP in April 2013. 2014. http://myprepexperience.blogspot.com/2014/06/personal-story-i-finally-got-up-courage.html.
- 44.Matthew. My Prep Experience. The peace of mind is tremendous. 2015. http://myprepexperience.blogspot.com/2015/01/matthew-in-columbus-peace-of-mind-is.html.
- 45.Tuan N. My Prep Experience. That Was Easy! Tuan Shares His No Drama PrEP Experience. 2014. http://myprepexperience.blogspot.com/2014/10/that-was-easy-tuan-shares-his-no-drama.html.
- 46.Michael P. My Prep Experience. Without the constant fear of HIV infection, I can engage in sex with the love of my life. 2015. http://myprepexperience.blogspot.com/2015/05/michael-without-constant-fear-of-hiv.html.
- 47.Richard. My Prep Experience. After Finally Getting PrEP Green Light, Still Disheartened. 2014. http://myprepexperience.blogspot.com/2014/07/richard-after-finally-getting-prep.html.
- 48.Todd. My Prep Experience. I am disappointed that people are not yelling from the rooftops about this medication! 2015. http://myprepexperience.blogspot.com/2014/10/todd-in-palm-springs-i-am-disappointed.html.
- 49.Wilson C. My Prep Experience. PrEP is my wake up call to a reality that I need to protect myself and stop putting my like in others’ hands. 2015. http://myprepexperience.blogspot.com/2015/07/prep-is-my-wake-up-call-to-reality-that.html.
- 50.Bryan JL. Slate Outward. Twenty-One Attempts at Swallowing Truvada. 2014. http://www.slate.com/blogs/outward/2014/12/05/truvada_the_gay_community_and_fear_considering_the_meanings_of_condoms_and.html.
- 51.Stern MJ. Slate Outward. “I Have Learned Not to Underestimate the Stigma”: Peter Staley on Truvada, Condoms, and HIV Prevention. 2014. http://www.slate.com/blogs/outward/2014/05/22/peter_staley_talks_about_truvada_hiv_and_stigma.html.
- 52.Stern MJ. Slate Outward. The Enfant Terrible of AIDS Activism Reaches a New Low. 2014. http://www.slate.com/blogs/outward/2014/09/10/michael_weinstein_of_the_aids_healthcare_foundation_hates_truvada_don_t.html.
- 53.Stern MJ. Slate Outward. There is a Daily Pill that prevents HIV. Gay men should take it. 2014. http://www.slate.com/blogs/outward/2014/01/06/truvada_prep_hiv_gay_men_should_take_pre_exposure_prophylaxis.html.
- 54.Stern MJ. Slate Outward. WHO Suggests All Gay Men Take Anti-HIV Drugs. That’s Fantastic News. 2014. http://www.slate.com/blogs/outward/2014/07/14/the_world_health_organization_wants_all_gay_men_to_take_truvada_and_it_s.html.
- 55.Argentum JNA. Huffington Post Queer Voices. World Health Organization Recommends PrEP: Prevention or Perpetuating Stereotypes?. 2014. http://www.huffingtonpost.com/jaga-na-argentum/world-health-organization-recommends-prep_b_5602480.html.
- 56.Ebert M. Huffington Post Queer Voices. World AIDS Day 2014: Young, Old, Black, White, MSM. 2014. http://www.huffingtonpost.com/matthew-ebert/world-aids-day-in-black-a_b_6240408.html.
- 57.Eigo J. Huffington Post Queer Voices. The Neverending Epidemic: And How We Can End It. 2014. http://www.huffingtonpost.com/jim-eigo/the-neverending-epidemic-_b_5467437.html.
- 58.Robert G. Huffington Post Queer Voices. The City of Love Could Lead the Way Toward Ending HIV Transmission. 2014. http://www.huffingtonpost.com/dr-robert-grant-md-mph/the-city-of-love-could-le_b_6052076.html.
- 59.Joseph L. Huffington Post Queer Voices. Context and the Blue Pill of Prevention. 2014. http://www.huffingtonpost.com/joseph-lunievicz/context-and-the-blue-pill-of-prevention_b_5909536.html.
- 60.Lisa S. Huffington Post Queer Voices. The Most Celebrated, Mistrusted Little Pill in the World. 2014. http://www.huffingtonpost.com/2014/12/01/prep-hiv-truvada_n_6185028.html.
- 61.Curtis WM. Huffington Post Queer Voices. Why The HIV Prevention Drug, PrEP, Remains So Divisive Among The LGBT Community. 2015. http://www.huffingtonpost.com/entry/why-the-hiv-prevention-drug-prep-remains-so-divisive-among-the-lgbt-community_us_55775d91e4b0317a2afd3ff4.
- 62.Mark. Queerty. Ten Reasons This Little Blue Pill Could Save Your Life Five Sexy Gay Men On HIV PrEP Explain Why They Are Taking The Pill. 2014. http://www.queerty.com/ten-reasons-this-little-blue-pill-could-save-your-life-20140719.
- 63.Rob S. Queerty. Question: Is It Finally The Right Time For HIV Negative Guys To Start PrEP?. 2014. http://www.queerty.com/question-is-it-finally-the-right-time-for-hiv-negative-guys-to-start-prep-20140728.
- 64.PrEP Facts: Rethinking HIV Prevention and Sex. Facebook. https://www.facebook.com/search/top/?q=prep facts%3A rethinking hiv prevention and sex.
- 67.Rowe C, Hern J, DeMartini A, et al. Concordance of text message ecological momentary assessment and retrospective survey data among substance-using men who have sex with men: a secondary analysis of a randomized controlled trial. JMIR mHealth uHealth. 2016;4:e44.CrossRefPubMedPubMedCentralGoogle Scholar
- 70.Roberts LD, Rajah-Kanagasabai CJ. “I’d be so much more comfortable posting anonymously”: identified versus anonymous participation in student discussion boards. Aust J Educ Technol. 2013;29:612–25.Google Scholar
- 73.Fader PS, Winer RS. Introduction to the Special Issue on the Emergence and Impact of User-Generated Content. Inst Oper Res Manag Sci. 2012;31:369–71.Google Scholar
- 76.Paul MJ, Dredze M. You are what you Tweet: analyzing Twitter for public health. Association for the Advancement of Artificial Intelligence 2011; Proceedings of the 5th International AAAI Conference on Weblogs and Social Media.Google Scholar