Qualitative investigation of factors impacting pre‐exposure prophylaxis initiation and adherence in sexual minority men

Abstract Introduction Men who have sex with men continue to account for the majority of new HIV infections in the United States. Many of those with new infections are unaware that they have HIV. Preventative measures continue to be essential in reducing new infections, with pre‐exposure prophylaxis (PrEP) being widely recommended. Objectives The overall aim of this qualitative study is to explore the impact of stigma, patient–provider dynamics and patient perception of PrEP on men's engagement with PrEP in a primary care setting. Methods The Consensual Qualitative Research Methodology (Hill, 2012) was used to explore the experiences of 14 men receiving care for PrEP at a Family Medicine clinic in the Midwest. Semistructured interviews were conducted to allow for depth of understanding of individuals' experience. Results Four major domains were identified: motivation to pursue PrEP, barriers and adherence to care, beliefs about how PrEP is perceived by others and experiences discussing sexual health and PrEP with providers. Conclusion It is important to better understand factors contributing to the pursuit of and adherence to HIV prevention measures and HIV care. Further, health systems and providers are encouraged to consider opportunities in terms of how their practice can destigmatize PrEP use and offer a welcoming environment for those pursuing HIV prevention. Patient or Public Contribution Patients were involved in the study through their participation in semistructured interviews, which provided the data analysed for this study. There was no additional participation beyond the one‐time interview or follow‐up poststudy. Their interviews helped contribute to our better understanding of the needs and experiences of those receiving PrEP‐related care.


| INTRODUCTION
Despite great gains in efforts to prevent HIV, 1  States were newly diagnosed with HIV, and 69% of those newly diagnosed were gay or bisexual men. 1 These figures illustrate that the burden of HIV is not equally distributed. 3 Despite overall declines in HIV, the rates of new diagnoses continue to increase among men who have sex with men (MSM). 4 Although only 7% of men report having sexual contact with other men, 82.9% of all HIV infections among men were attributed to male-to-male sexual contact. The majority of new HIV transmissions are from persons who do not know they have HIV, highlighting the importance of prophylactic prevention measures. 5 The introduction of pre-exposure prophylaxis (PrEP) 6 for HIV prevention in 2012 transformed the fight against the global HIV/ AIDS pandemic. 7 For the first time, individuals who were HIV-negative could take a well-tolerated pill once daily and significantly reduce their likelihood of seroconversion if exposed to the virus. 8,9 Best practices now include recommending PrEP for individuals at high risk for acquiring HIV due to sexual practices or intravenous substance use. PrEP is recommended by the CDC and received a Grade A recommendation from the US Preventive Services Task Force (2019). 10 Despite the great promise of PrEP, uptake has been much slower than expected. 6,11 Only 18.1% of the estimated 1.2 million persons in the United States for whom PrEP is recommended are prescribed a PrEP medication. 12 Although MSM, in comparison to other at-risk populations, have a higher rate of uptake, the public health benefit of PrEP has been limited by relatively few individuals taking it. 6,13 Another challenge is PrEP patients' adherence to medication use as prescribed, which varies widely from 22% to 90%. 14 Because the public health benefits of PrEP are dependent on taking the medication daily, 6 factors impacting PrEP adherence are an important target for research. 15 To fully realize the potential public health benefits of PrEP, barriers to initiation and adherence must be better understood.
This information is needed to inform subsequent interventions to improve uptake and effective use.
Individuals with a stigmatized identity (e.g., being LGBTQ) face unique stressors related to that identity, such as experiences with discrimination, efforts to conceal one's identity and the internalization of negative messages about their identity. 16 These stressors, which represent a concept called minority stress, 17 have powerful impacts on behaviour, 18 including engagement in health care services, and drive health disparities within LGBTQ communities. [19][20][21] Uptake of PrEP for HIV prevention is hindered by minority stress, particularly within target populations. 22,23 One qualitative study found that LGBTQ and MSM participants feared rejection from partners and being labelled as sexually promiscuous as a result of using PrEP. 24 One manifestation of minority stress is the internalization of stigma. 25 For sexual minority individuals, this can be conceptualized as internalized homophobia. 17 Internalized homophobia has been shown to negatively impact PrEP use, 26,27 suggesting that multiple manifestations of stigma impact PrEP use.
Another important factor to consider is the practice of health care providers. Increased utilization is associated with effective education and messaging about PrEP. 28 However, coverage of PrEP in medical education is highly variable, 29 and providers' medical decision-making related to PrEP is affected by heterosexism and racism. 30 Disturbingly, medical students are less likely to prescribe PrEP for patients at highest risk for seroconversion (i.e., less often prescribing it for patients who do not use condoms and have multiple partners). 31 Provider notions that prescribing PrEP may lead to risk compensation (i.e., patients taking greater risks with sexual health once they are prescribed PrEP) also represent a provider-level factor that has interfered with more widespread PrEP use. 32 These issues have led to the addition and refinement of PrEP-specific training as part of medical education. 29 Although these studies suggest that stigma and provider attitudes and behaviour have an important influence on PrEP usage, previous research (e.g., [28][29][30][31][32] has focused on provider perspectives on the phenomena. As described in detail below, we sought to shed light on the patient experiences of these phenomena. Evaluation of patients' perceptions of provider medical decision-making and approach to patient communication surrounding PrEP is a poorly understood but potentially important part of increasing uptake of PrEP.

| Present study
To elucidate the role of stigma and provider behaviour in individuals' PrEP initiation and adherence, we conducted a qualitative study using semistructured interviews. Participants were patients already on PrEP and recruited from a Family Medicine clinic at an academic medical centre in the Midwest urban setting. We sought to explore the perception of PrEP use among MSM and its impact on one's decision to pursue PrEP, the impact of internalized homonegativity or stigma of PrEP use and aimed to gain a better understanding of the experience of communicating with providers about sexual health in relation to HIV prevention.

| METHODS
Fifteen men (N = 15) receiving medical care for PrEP in a Family Medicine clinic were recruited for participation. One individual did not follow up with participation after initial contact; therefore, the sample size was 14 self-identified cisgender gay or bisexual men (N = 14). A qualitative methodological approach was utilized to allow for a depth of understanding into individuals' experiences. Generally, qualitative research allows for an understanding into the complex factors contributing to a particular construct(s). This is often gained through individual interviews, as is the case with the current study.
This sample size is consistent with the CQR Methodology as outlined by Hill (2012), which recommends including 12-15 participants. Within CQR, this sample size generally allows for consistency in response, given a relatively homogeneous sample, which is appropriate for this study. The study was subjected to IRB review, with approval. Before the medical appointment, the clinical nurse coordinator identified eligible patients. Initial criteria included patients who were currently receiving medical care in the clinic for PrEP. If identified by the nurse coordinator, information on participation in the study was presented by the nurse coordinator during the medical appointment. After re-

| Consensual Qualitative Research (CQR) Methodology
Analysis of the data closely followed the CQR Methodology, as described by Hill. 33 Transcriptions were first reviewed to identify broad topic areas to help establish the domains. The PI completed an initial review of transcripts. All transcripts were then reviewed by team members, and data were 'blocked' into relevant domains 33 until consensus was achieved. The established domain list was reviewed by the external auditor, with relevant changes made accordingly.
A similar review process took place in the summarization of domains into core ideas (workable descriptions of the data) as well as categories/subcategories (common themes across the interviews and that help define the content of the domains and core ideas). Finally, the frequency or representativeness of the categories/subcategories was determined. Categories/subcategories were labelled as general, typical or variant. General indicates categories in all or all but one of the interviews. Typical is found in more than half and up to all but one of the interviews. Variant categories are found to be in at least two and up to half of the interviews. No frequency label was assigned to any categories/subcategories that were found in less than two of the interviews.   Within social contacts and peer groups:

| Pursuit of PrEP
Yeah and I was also like just kind of playing volleyball that was a lot of med students that talked about it and so it just kind of sparked my interest.
As well as from their medical team directly: A doctor brought it up. We were having discussions at my annual physical…I talked about that I am bi, so he suggested that this would be a good thing to be on because it is a preventative measure more than anything else.

| Adherence and Care
Participants discussed the barriers associated with adherence to

| Perception and Stigma
Participants were also asked about how PrEP use is seen within and outside of the LGBTQ community. Broadly, participants addressed topics related to the perception of PrEP use and also how experiences of internalized homophobia and related stigma may impact one's decision to pursue PrEP. Individuals stated that some see PrEP as 'permission' to engage in risky sexual behaviour and misunderstand it as being protection from all STIs.
For example: Amongst my more mature friends-it is perceived as a great way to add a layer of protection during sex my more immature friends take it as a carte blanche.
Some people do think that it protects you from everything, which I think is obviously stupid and incorrect.
Additionally, some described stigma that those who take PrEP engage in risky sexual behaviour: Lastly, expression of support for the LGBTQ community would help some participants feel more comfortable in clinic: I think it would be important to have your medical staff, not necessarily identify as an ally for an LGBT community, and not even asking that they feel forced to. But if there are any members-maybe like a pin or something or on their nametag.

| DISCUSSION
PrEP has dramatically changed how we prevent HIV and is a key pillar in our fight to end the HIV epidemic. 2 In this qualitative analysis of sexual minority men, we aimed to investigate the factors impacting PrEP initiation, adherence, perceptions and stigma and interaction with medical providers within a primary care clinic. Given the stigma associated with sexual health and HIV, understanding these factors is vital to ensuring that patients have a positive experience that encourages them to continue engagement in care over time. The goal of our study was to better understand the experiences of those receiving PrEP and communicate that information to medical providers so that they can provide high-quality PrEP care.
Many participants stated that they were aware and motivated to start PrEP even before their clinic appointment. They initiated PrEP through a variety of methods including independently seeking PrEP care, being referred by a peer or being counselled by their physician to begin PrEP. In addition, our study is unique because it was conducted while the primary care clinic was working to build a new PrEP programme.
There is a lack of qualitative data highlighting patient perspectives on new PrEP programmes within primary care clinics. Given that primary care clinics are the first point of contact for patients interacting with the health care system, a better understanding of these perspectives is key to successful implementation of PrEP programmes.
The PrEP Nurse Care Coordinator in this study is also an important contributor to the literature. Other previous research has evaluated nurse-led PrEP initiatives, but the duties of the PrEP Nurse Care Coordinator in our study setting are unique. 35 Barriers to PrEP initiation, adherence and follow-up are well documented. 36 Our patients noted few barriers in their care as a result of there being a dedicated PrEP programme with a PrEP Nurse Care Coordinator.
Other clinics looking to start a new or improve an existing PrEP programme can benefit from these lessons learned on how to provide high-quality, patient-centred PrEP care.

| Limitations & future directions
All subjects in this study received care from the same provider in a single clinic setting, potentially limiting the generalization of these results to all patients. However, this does provide greater consistency of the data to evaluate the impact of specific programmes, like the PrEP Nurse Care Coordinator, on patient care. The study intentionally included only sexually minority men; however, the majority of participants were non-Hispanic, White and all had insurance.
This may limit the applicability of the research to other genders, sexual orientations, races and those without insurance.
Future research could be conducted using a similar methodology at a clinic without a designated PrEP programme and PrEP Nurse Care Coordinator to evaluate the impact of these factors on care.
Given the importance of perception, stigma and interaction with medical providers, a similar qualitative study could also focus on the perspective of medical providers as they progress through their training. Questions include level of comfort taking a sexual history, views on PrEP, previous sexual health and PrEP training, and comfort prescribing PrEP.

| CONCLUSION
Understanding factors that impact initiation and adherence is key to ensure that patients get started on the medication, when indicated, and continue therapy while their risk of HIV is still present. A better understanding of these factors, as learned from this qualitative study, has the potential to improve the quality of PrEP care provided in primary care clinics.