Brief Report: “I Didn't Really Have a Primary Care Provider Until I Got PrEP”: Patients' Perspectives on HIV Preexposure Prophylaxis as a Gateway to Health Care

Abstract

Background: 

HIV prevention is the primary goal of preexposure prophylaxis (PrEP); however, ancillary benefits may exist, including PrEP as an entry point to primary care.

Objective: 

To explore PrEP users' perspectives on how PrEP use relates to broader engagement in health care.

Design: 

In-depth qualitative interviews.

Participants: 

We recruited PrEP users aged 18 years or older from a social media group for people interested in PrEP information and a Boston community health center specializing in health care for sexual and gender minorities.

Approach: 

Inductive content analysis to identify emergent themes.

Key results: 

All 25 participants were men who have sex with men, whose mean age was 34 years, and 84% were White. Three major themes emerged: (1) accessing PrEP was a strong motivator for initial and continued engagement in health care, which for some evolved over time into accessing comprehensive primary care; (2) provider awareness and attitudes about PrEP influenced participants' ongoing engagement in health care; and (3) PrEP engendered a positive sense of control over users' personal health, giving them agency in reducing their risk of HIV and engaging in other aspects of their health. Quarterly PrEP visits helped participants establish and maintain a relationship with a primary care provider, access non–HIV-related care services, and feel empowered to keep themselves healthy.

Conclusions: 

The benefits of PrEP extend beyond HIV prevention to broader engagement in health care, including new relationships with primary care providers and use of other preventive health care services. To maximize those benefits, efforts are needed to ensure that providers are aware, nonjudgmental, and supportive of PrEP use.

INTRODUCTION

Preexposure prophylaxis (PrEP) is approximately 99% effective in reducing the risk of HIV infection among men who have sex with men (MSM) when taken daily.^1,2 In addition to its robust HIV prevention benefits, PrEP-related care has ancillary clinical benefits, including routine screening for hepatitis C and sexually transmitted infections (STIs).³ PrEP may have even broader clinical benefits by engaging people in primary care and facilitating access to other preventive services. Linkage to primary care may be particularly important for people at risk of HIV infection, including MSM, who have a higher risk of other infectious and chronic diseases, those who do smoking, those with substance use disorders, and those with mental health challenges secondary to experiences of stigma and discrimination.^4,5 We previously found that PrEP use was associated with an increased receipt of other preventive services, including influenza vaccination and screening for tobacco use and depression.⁶ However, few studies have explored patients' perspectives on the role of PrEP in engagement in primary care. To address this gap, we conducted a qualitative study to explore the engagement in health care among adults using PrEP.

METHODS

We used flyers and provider referrals to recruit PrEP users from a Boston community health center that specializes in care for sexual and gender minorities and online posts to recruit from a social media group on Facebook for people interested in information about PrEP. All participants were English-speaking adults who were aged 18 years or older, reported not having been previously diagnosed with HIV, and reported PrEP use in the past 6 months. Participants provided informed consent and received a $30 gift card.

A single interviewer (V.E.P.) conducted 30- to 60-minute one-on-one interviews in a private room at the community health center or through a Web conferencing service using a semistructured interview guide. The interviews were conducted from September 2018 through March 2019. Participants completed a brief sociodemographic survey after the interview. Interviews explored participants' experiences with PrEP, including how they perceived it to have affected their engagement with health care. Recruitment ended after reaching thematic saturation. The Institutional Review Board at Fenway Health approved the study protocol.

We used inductive content analysis of the interview transcripts to generate themes relating to PrEP and engagement in primary care. Deidentified transcripts of the interviews were analyzed using NVivo software version 12 (QSR International Pty Ltd, Melbourne, Australia). The analyses involved 3 types of coding: open, axial, and selective.⁷ Three coders (W.C.S., M.B.-B., and J.L.M.) independently reviewed and coded the transcripts, discussed codes and emergent themes, and reconciled any coding discrepancies. Subgroup analysis was conducted using a coding matrix to compare the identified codes and themes by participant age and race/ethnicity and determine whether there were any differences in themes between the subgroups. Data were examined iteratively using NVivo software until the coding team reached a high level of intercoder agreement, and final themes were identified.

RESULTS

Of the 25 participants, all were MSM, with a mean age of 34 years (range: 21–55), and 84% were identified as White, 8% as Black, 4% as Latino, and 4% as Middle Eastern descent (Table 1). Most of the participants (68%) were employed full-time or part-time, all participants had health insurance, and nearly half (48%) had an annual income of $60,000 or higher. Qualitative results are presented further as themes (Table 2).

TABLE 1. - Participant Characteristics

Demographics	N (%) or M (SD)
Age, mean (SD)	34 (10)
Race/ethnicity
Non-Hispanic White	21 (84)
Non-Hispanic Black	2 (8)
Latinx	1 (4)
Middle Eastern descent	1 (4)
Income
Less than 20,000	7 (28)
20,000–39,999	4 (16)
40,000–59,999	2 (8)
60,000+	12 (48)
Employment
Full-time	4 (16)
Part-time	12 (48)
Unemployed	6 (24)
Disabled	2 (8)
Retired	2 (8)
Student	1 (4)
Health insurance
Private	16 (64)
Medicaid	2 (8)
Medicare	3 (12)
None	0
Other	4 (16)

TABLE 2. - Themes and Exemplar Quotations

Themes	Exemplar Quotations
1. Accessing PrEP was a strong motivator for initial and ongoing engagement in primary care.	“… I didn't really have a primary care provider until I got PrEP so … [PrEP] was like my avenue or access route to seeing like a doctor regularly …”—White, age 30. “I'm trying to get in here for other things rather than just getting in for testing, like GI problems, I was like, ‘Oh, I've been going here, I should really just make this my primary care place’. Or like, ‘Oh, there's the behavioral health, I should start looking into that kind of stuff.’”—White, age 21.
2. Provider awareness and attitudes about PrEP influenced participants' ongoing engagement in health care.	“I understand the concern and I understand that I am a high-risk patient, but I definitely feel like my will was pushed to the side. And I think that formed the primary barrier … those really negative experiences with the practitioners kept me away from PrEP for a long time.”—White, age 25.
3. PrEP engendered a positive sense of control over users' personal health.	“I felt like [PrEP] gave me some agency in other parts of my life. I was no longer spending time or energy worrying about HIV, feeling kind of at the mercy of this virus. Now I've started to be able to use my time and concentrate on other things that enhance my life as well.”—White, age 47.

Theme 1: Accessing PrEP was a Strong Motivator for Initial and Ongoing Engagement in Primary Care

Before seeking PrEP, many participants had engaged in care intermittently, including STI testing at health care clinics, but had not sought or established ongoing care with a primary care provider. Participants who believed that they were generally healthy and would not otherwise seek out primary care found that PrEP was a catalyst for establishing a relationship with a primary care provider:

“…I didn't really have a primary care provider until I got PrEP so… [PrEP] was like my avenue or access route to seeing like a doctor regularly…”—White, age 30.

“[Before PrEP] I didn't have a PCP but would come to this office or that office for testing… but only for that not for primary care or anything”—White, age 21.

“Men in general…don't go to see a doctor unless they have something wrong with them, and then it's too late. So, I'm glad that I had a reason to go see a doctor…”—Latinx, age 30.

In addition to establishing a primary care provider, participants reported that the quarterly visits for PrEP care provided an opportunity for them to build and maintain an ongoing relationship with their provider. Some participants found that the convenience of receiving their PrEP care at a primary care clinic helped motivate them to access non–HIV-related care services:

“… As a result of the three-month check-ins, I felt like I had a good working relationship with my doctor, and I think that was really important, because before I didn't visit my doctor regularly.”—White, age 26.

“I'm trying to get in here for other things rather than just getting in for testing, like GI problems, I was like, ‘Oh, I've been going here, I should really just make this my primary care place’. Or like, ‘Oh, there's the behavioral health, I should start looking into that kind of stuff.’”—White, age 21.

Theme 2: Provider Awareness and Attitudes About PrEP Influenced Participants' Ongoing Engagement in Health Care

For some participants, their providers' attitudes about PrEP affected the extent to which they remained engaged in care. Participants with providers who communicated in sex-positive, nonstigmatizing ways cited better overall relationships with their providers and increased engagement in follow-up care:

“Our doctor was excited when we told her we were thinking about it [PrEP]. She [the provider] was like, awesome, cool. You know, this is the right thing to do. Very affirming; not a problem.”—White, age 38.

For other participants, negative experiences with providers, including perceived pressure from providers to initiate PrEP without the consideration of their HIV prevention needs and preferences, was a barrier to initially accessing PrEP or continued engagement in PrEP care:

“I definitely felt pressured into it very early on … especially when I didn't feel at the time it matched my lifestyle. I think that that really stuck with me … sort of just their intonation, you know suggesting that I really should get on PrEP soon.”—White, age 25.

“I understand the concern and I understand that I am a high-risk patient, but I definitely feel like my will was pushed to the side. And I think that formed the primary barrier … those really negative experiences with the practitioners kept me away from PrEP for a long time.”—White, age 25.

Some participants cited unease in having to initiate discussions about PrEP with their providers and even educate their providers about it. Others cited discomfort discussing about sex and HIV prevention with their providers, leading to disengagement from primary care and turning to online services to access PrEP:

“[Asking providers] ‘hey, you know, are you up with Truvada and PrEP and do you know all the things?’ Because I don't have to teach you anything. And that can be a weird, awkward question.”—White, age 23.

“I…had never really had a conversation with a doctor about sex. Not an honest conversation ….I was like, ‘I don't really want to deal … or while I'm figuring out what I want to do as far as a primary provider, I just want to get PrEP easily’. So I went to … telemedicine services.”—White, age 47.

Theme 3: PrEP Engendered a Positive Sense of Control Over Users' Personal Health

Several participants expressed a sense of ease, awareness, and control over their health as a function of taking PrEP and engaging in PrEP care. For some, quarterly PrEP visits gave them peace of mind about their HIV status and helped them feel proactive about both reducing their risk of HIV infection and caring for other aspects of their health:

“I feel like [PrEP care] definitely gave me more sense of knowing exactly what's going on, so that sense of I guess calm is a little bit better. Or assuredness that I know what's going on. I feel definitely more in charge of my health.”—White, age 21.

“I think taking PrEP and being required to do a three-month check-in has addressed this major concern of contracting HIV and made me a lot more in control of my health. I feel informed, I feel protected.”—White, age 26.

“I felt like [PrEP] gave me some agency in other parts of my life. I was no longer spending time or energy worrying about HIV, feeling kind of at the mercy of this virus. Now I've started to be able to use my time and concentrate on other things that enhance my life as well.”—White, age 47.

In addition to empowerment, attending quarterly visits and building a positive rapport with primary care providers promoted a sense of accountability to providers. Participants anticipated being asked by providers about their continued PrEP use, and this anticipation and accountability encouraged reflection about their broader health and well-being:

“I find when providers ask me, ‘Are you taking your PrEP?’ I get a little nervous because I'm like, ‘Yes? I think so?’ So it forces me to take stock every 3 months or so for my follow-up, like how am I doing on a bigger level. So I guess it makes me more reflective, self-reflective in that way.”—White, age 29.

Subgroup analysis did not reveal thematic differences by age and race/ethnicity.

DISCUSSION

In this qualitative study, we found that PrEP motivated MSM to establish a primary care provider and remain engaged in primary care, provider attitudes about PrEP influenced users' engagement in care, and PrEP care increased a sense of control over personal health. Our study suggested that PrEP can be a catalyst for initiating and sustaining engagement in comprehensive primary care among MSM, potentially yielding health benefits that extend beyond HIV prevention.

We found that PrEP prompted participants to establish a relationship with a primary care provider, some for the first time, and that quarterly PrEP visits provided opportunities to access non–HIV-related health care services, including behavioral health care and preventative screenings. Our findings are consistent with a previous work showing that MSM who used PrEP were more likely than nonusers to have a primary care provider and health insurance,⁸ be aware of non–PrEP-related health services,⁹ and access other preventative care.⁶ Our study suggests that PrEP may provide ancillary health benefits by motivating engagement in primary care¹⁰ and supports efforts to integrate PrEP and routine preventative health care in primary care settings.¹¹

Participants emphasized that having a positive, nonjudgmental, and knowledgeable PrEP provider played an important role in sustaining their engagement in care, whereas those who felt stigmatized or pressured were discouraged from accessing PrEP or disengaged from in-person care entirely. Positive relationships between MSM and their providers are associated with lower perceived discrimination and increased disclosure of sexual behaviors, which can facilitate the receipt of comprehensive sexual health care.^12,13 Our study highlights the need to bolster providers' ability to provide nonstigmatizing and person-centered care to MSM to improve their engagement in both PrEP and broader primary care. Providers may indicate that they are uncomfortable in discussing sexual health with their patients, but it is well-documented that patients perceive these discussions as a routine part of primary care.¹⁴ There is a need to disseminate trainings and quality improvement initiatives that can improve providers' knowledge, skills, comfort, and motivation to elicit culturally tailored nonjudgmental sexual and substance use histories, which can enhance discussions about PrEP.^15–17 Examples include in-person or virtual programs developed and implemented by the National STD Prevention and Training Centers,¹⁸ one-on-one educational outreach (ie, academic detailing),¹⁹ and stigma-reduction interventions for providers.²⁰

We found that PrEP use and routine PrEP-related visits promoted participants' sense of control and empowerment related to their health. Previous studies have suggested that the psychosocial benefits of PrEP use, including improved self-efficacy, may help promote PrEP adherence and increase engagement in broader primary care.⁹ Our study suggests that training providers to enhance patients' self-efficacy related to their sexual and general health care has the potential to increase their engagement in multiple aspects of health.

Our study has limitations. Our sample was predominantly White cisgender MSM with health insurance, in a state that has expanded access to health insurance for more than a decade; therefore, our findings may not be representative of all MSM at risk of HIV acquisition, including young Black MSM in the South who have the greatest unmet need for PrEP.²¹ Even with purposive coding focused solely on non-White participants, there were no exemplar quotes available from the Black, Latino, or Middle Eastern participants, which were relevant to the study question. Our findings may also have limited generalizability to other populations who may benefit from PrEP, including cisgender women, transgender people, or people who inject drugs.

Our qualitative study suggests that PrEP can be a gateway to primary care for MSM and that integrating PrEP into primary care may facilitate the use of both PrEP and other preventive services. Maximizing the role of PrEP in engaging MSM in primary care will require the provision of culturally sensitive care and increasing patients' awareness of non–HIV-related preventive care services that are available and indicated. Future studies can explore the short-term and long-term psychosocial benefits of engaging in PrEP care and the extent to which PrEP use is associated with clinical benefits from other preventative care services.