Barriers and Opportunities to Improve the Implementation of Patient Screening and Linkage to Pre-Exposure Prophylaxis in Primary Care

The study utilized a proof-of-concept approach to assess the feasibility and acceptability of the pilot project: Screening and Linkage to PrEP (Project SLIP).²² The overall protocol for the pilot study has been described in detail in a prior publication.²² Briefly, a 6-item sexual risk screening instrument for facilitating PrEP uptake was developed and integrated into the workflow of two primary care clinics contained within a large, integrated health system, Kaiser Permanente Southern California (KPSC), as part of Project SLIP. At KPSC, PrEP is primarily provided with HIV specialty care services.²² Kaiser Permanente provides care for over 9 million Californians.²³ Providing screening and linkage to PrEP from Kaiser’s primary care clinics could greatly extend PrEP services to many members of communities at risk for HIV. Because of the limited scope of this pilot, patients whose electronic medical records indicated cisgender male identity aged 18-65 were to be screened for PrEP indication during their routine primary care visits over a 12-month implementation period. Patients who screened as eligible for PrEP were then referred to an HIV specialty care services for further PrEP evaluation and prescription as per the protocol for providing PrEP at that time (Figure 1).

Figure 1.Overview of the screening and linkage to PrEP pilot study, Project SLIP.

Semi-structured in-person interviews were conducted with providers and staff (e.g., primary care doctors, nurses, medical assistants, administrators, and front desk staff; n=8). Interviews lasted approximately 60 minutes (range: 45-75 minutes) and were conducted in English by the study principal investigator (ES). Interview questions focused on (1) experiences around discussing sexual behavior and substance use with patients, (2) attitudes about providing PrEP as an HIV prevention intervention for SMM, and (3) factors that would make it easier or more challenging to screen and refer SMM for PrEP (“How best do you think this routine screening can be integrated into your clinic workflow? (Probe: When should it be administered? Who should conduct the screening and collect the form? Who should be going over the result of the screening with patients?)”). Information about provider demographics, specialty, and related experience providing care to SMM was collected through brief surveys at the end of each interview.

Semi-structured phone interviews were conducted with patients who screened as eligible for PrEP (n=30). Patients were stratified by eligibility and referral outcomes; 8 patients were interviewed who were not eligible for PrEP, 13 were interviewed who were eligible for PrEP but who did not start PrEP, and 9 were interviewed who were eligible for PrEP and did start PrEP treatment after referral. Interviews lasted approximately 60 minutes (range: 45-75 minutes) and were conducted in English by three members of the research staff (AM, DLG, and JMC). Interview questions focused on (1) comfort with screener questions and ease-of-use (“What did you think about the specific questions on the questionnaire?”), (2) experience with consultation for PrEP with PCP (“Did your doctor talk with you about PrEP at your last visit? If yes, how did you find this experience?”), (3) factors that made it easier or more challenging to attend the PrEP appointment at HIV specialty care services, (4) experiences during PrEP evaluation and prescription fill, and (5) reasons for/against starting PrEP treatment. Patient demographics were collected via a brief survey administered at the end of the interview.

All interviewees provided informed consent to participate in the study and patients received $50 for their time. Study procedures were approved by the Kaiser Permanente Southern California and RAND Corporation institutional review boards.

Thirty patients were interviewed as part of this study and had a median age of 30.5 (range 21-66). Patient participants identified as Hispanic/Latino (26.7%), Asian (6.7%), Black/African American (10%), White 8 (26.7%), and other race (20%), and the majority (70%) identified as gay (Table 1). The eight provider and staff participants consisted of front desk workers (12.5%), administrators (25%), nurses (37.5%), or primary care medical doctors (25%). Demographic information for providers is not provided due to the small number of participants and concern for anonymity.

Based on the full sample of participants eligible to be screened during the 12-month study period (Figure 1), N=1,225 individuals were screened, 1.8% (n=22) of whom were eligible and referred for a PrEP appointment with an infectious disease provider (this does not include those who were eligible but were already on PrEP or living with HIV). Of the 22 who were eligible and referred for a PrEP appointment, 77.3% (n=17) attended the appointment and filled the PrEP prescription at the KPSC pharmacy within 5 days.²²

Based on the interviews with patients and providers, there were several barriers to implementing the screening and linkage intervention as well as suggested opportunities for improvement at each step in the Project SLIP screening and linkage to PrEP process. While these two groups aligned in some of their feedback, they also diverged substantively in their focus on certain barriers and opportunities. In general, patients tended to discuss the individual-level factors that impacted their experience and opinions around taking PrEP, whereas providers focused more on system-level factors impacting their ability and willingness to screen and link primary care patients to PrEP. In the next section, we present four thematic categories highlighting these barriers and opportunities: 1) Financial Barriers: Individual- vs. Clinic-level Considerations, 2) The Role of Stigma, Discomfort, and Cultural Factors, 3) Logistical Hurdles and Streamlining the Intervention, and 4) The Lack of PrEP Knowledge and the Need for Education (Table 2) and visually depict how each thematic category manifested across the stages of the screening and linkage to PrEP intervention.

Costs surrounding attending PrEP appointments, time off work, copays for prescriptions, and labwork were often cited as barriers among patients, while system-level costs to implementing intervention among providers We identified a clear divergence between how patients and providers described the relevance of financial cost in their experiences and perceptions of the intervention. For patients, the cost of a PrEP prescription was the most prevalent barrier to both attending their clinic visits and filling their PrEP prescription; indeed, this was discussed by nearly every patient at length.

Patients disclosed a wide array of individual-level financial barriers affecting their ability to attend clinic appointments, such as having to take off work to visit the clinic (i.e., lost wages), and transportation-related costs (e.g., gas, parking, etc.). For example, one patient discussed the role of transportation barriers related to parking costs:

“Having to pay to park there is kind of like, iffy…I just feel like I’m already paying a ton of money to be a ^patient, so when you still want to charge me to park there…Maybe charge a little less or make it free.” (29, Hispanic/Latino, Mexican, gay, eligible but not linked to PrEP)

A particularly common strategy suggested by patients to improve this intervention was to reduce financial costs, including ensuring that the PrEP prescription be free to fill or, at a minimum, significantly less expensive. One participant discussed this need in the context of patients who are economically disadvantaged, such as those who are in school:

“The fact that people have used PrEP as a defense tool for your health definitely has to do with where you are economically, where you land on the income bracket. So, for a college student, it has to be free. For somebody who has just come out of college, there has to be assistance. For somebody who is deep in their career and they know what’s up, they’re not going to think twice about it.” (36, Hispanic/Latino, gay, linked to PrEP)

The idea that patients had to choose between different forms of preventative care because of cost was identified several times. One patient explained how condoms may be a better option for some:

“We usually think that buying condoms, that’s not too expensive and it’s probably going to be a good way to kind of prevent any sexually transmitted diseases, and that’s probably a lot cheaper than medication, so that could be one reason I wouldn’t go for ^PrEP.” (28, other race, straight, ineligible for PrEP)

Thus, a financial barrier to starting this intervention may be that other forms of preventative care may be more cost-efficient.

Despite the multitude of financial factors that patients discussed as relevant barriers to accessing PrEP, providers did not discuss many perceived individual-level financial barriers for patients. One provider suggested that: “this ^intervention should be done in clinics that are more in lower-income areas” (Primary Care Doctor). That financial barriers were not discussed often by providers (and, as in the above instance, not discussed at length or with nuance) suggesting some providers may lack awareness of the actual or perceived cost to patients of accessing PrEP within the healthcare system. Providers may also be unaware of additional costs (e.g., transportation, parking costs, time off work) incurred in the process of acquiring PrEP.

On the other hand, providers more frequently discussed system-level financial barriers such as the cost of additional staff time to complete the screening and linkage intervention components. One physician explained that while there could be a staff member to support the intervention, there would need to be new funding to support this role/work:

“If you want to have somebody ^{to do the intervention} you're going to have to find funding for another person to do this…we're very understaffed.” (Primary Care Doctor)

The clinic funding and staffing shortages were observed barriers to implementing the screening and linkage intervention. Multiple providers interviewed discussed staff turnover and the need to continuously train new staff (and rotating residents) on Project SLIP, which did not consistently happen, especially when clinics were busy:

“^{The PrEP intervention} is a lot to cover…that actually can be one of the biggest challenges. When you have new members coming in.” (Primary Care Administrator and Nurse)

This study suggests that it is important to consider that the financial costs associated with conducting a screening and linkage to PrEP intervention may be perceived differently by patients and providers and that educating providers about the costs impacting patients might be important for intervention success.

Patients and providers both described stigma as a barrier to this intervention, but at different time points in the screening and linkage to PrEP prescription process. Some patients discussed how their responses to the screening items could lead to feelings of shame or stigma related to identifying as a sexual minority.

“People might feel shame and guilt associated with, like, when they’re taking the questionnaire, it might cause those feelings. So, it might provide dishonest responses on a questionnaire.” (25, Hispanic/Latino, gay, eligible but not linked to PrEP)

Several participants who identified as sexual minorities mentioned fear that being screened or evaluated for PrEP would potentially disclose their sexual identity without their consent. Some patients discussed being fearful of PrEP showing up on their insurance, and fear that being on PrEP could get back to their parents or be made public knowledge.

“I’m still on my parents’ health insurance, and if PrEP were to show up on that, I don’t know how they would react, and I don’t know how I would feel about them knowing.” (24, other race, gay, eligible but not linked to PrEP)

Some patients also identified stigma as a barrier to discussing their sexual behaviors, identity, and history openly with their provider during the initial PCP visit. Some patients voiced discomfort discussing these aspects of their lives given how societal norms have conditioned them to keep their sex life private. One patient highlighted how important it was for them to have a doctor who also identified as a member of the lesbian, gay, bisexual, and transgender (LGBT) community during the primary care visit as a way to increase comfort in discussing sexual health and the use of PrEP:

"I specifically called and asked for a gay doctor, so he can know about a gay man’s health, and I think that's definitely different than a straight man’s health. We do different things. So, to find out ^{my PCP} wasn’t very personable, and I couldn't connect with him was very disappointing for me." (21, decline to state race/ethnicity, gay, eligible but not linked to PrEP)

Both patients and providers agreed that making patients comfortable discussing sexual health during clinic appointments was an important strategy to improve this intervention. To do so, some patients suggested specifically recruiting clinicians that are members of the LGBT community:

“Discussing sexual health with somebody when I know that they're like a gay doctor that somehow puts me more at ease…you know that they're going to be more familiar with some of the issues you're talking about or potentially less judgmental about it.” (34, white, gay, linked to PrEP)

One patient noted a preference for an intervention provider who was an LGBT community member over a provider who simply had training in LGBT health.

“I was looking for a LGBT doctor…^{the clinic} said, ‘we have, like, a network of doctors, of LGBT doctors’…I was casually talking to the doctor, and I mentioned, like, ‘oh, I thought it was great that, you know, it was a LGBT doctor,’ and he looked confused because he was not an LGBT doctor…He was like, ‘I’ve taken one certification class on LGBT issues’…that was not a positive experience…needless to say, I didn't do ^{the PrEP referral}…it was definitely a factor.” (30, Black, gay, eligible but not linked to PrEP)

This quote depicts the importance to some sexual minority patients of having an LGBT clinician. The ability to link sexual minority patients with LGBT clinicians may be one promising way of increasing the acceptability of the screening and linkage intervention.

Providers spoke of reluctance and discomfort among their peers in discussing sexual behaviors and PrEP with patients during the initial patient visits. These experiences likely led to missed opportunities to implement the screening and linkage to PrEP intervention. Further, some providers noted that sexual behavior interventions have not succeeded in primary care in the past due to the stigma of sexual health:

“Sexual health is something that people struggle with…Just having condoms in clinic has not been well-received by people in power…I had somebody in power straight up email me and say that they didn't want to have condoms in clinic…So, you're not only dealing with barriers from the patient, you're dealing from barriers from our peers - our colleagues. We're dealing with a lot of perceptions, homophobia, internalized or otherwise.” (Primary Care Doctor)

These insights from both patients and providers suggest that stigmatization of sexual health was a meaningful barrier to the success of the intervention overall and may have contributed to the relatively low rates of screening (4.19%) among patients.

There were also cultural differences in experiences and perceptions of stigma, and in the likelihood of participating in a PrEP screening and linkage intervention, as one patient “I know ^p

“In communities of color…there is still a stigma in relation to the industrial healthcare system…especially in the Latino communities or African-American communities, preventative care is not something that you do.” (36, Hispanic/Latino, gay, linked to PrEP)

Relatedly, one provider discussed her perception that there are cultural differences among some older participants whereby they may experience more discomfort in answering sexual health questions:

“The younger males were open to ^PrEP and some of them even asked more information on it, but it was just most like the older…it was just too much information to reveal…So, I did have a little uncomfort with that.” (Primary Care Nurse)

In contrast to diverging perspectives on cost-related barriers discussed in the previous theme, both providers and patients shared similar perspectives on the impact of stigma, discomfort, and cultural barriers to the screening and linkage to PrEP intervention. This convergence suggests an opportunity to improve the intervention through stigma reduction and staffing of key stakeholders to improve the overall success of the intervention.

Patients and providers agreed that several logistical barriers impacted the ability to implement the screening and linkage intervention in Project SLIP, although they differed in how they described the barriers and how best to ameliorate them. Patients listed many individual-level logistical difficulties that made the screening and linkage process highly inconvenient, even inaccessible. Some of these logistical barriers included being unable to make their appointment time at specialty HIV specialty care services, trouble locating the clinic, experiencing difficulties finding transportation to the clinic, not receiving a phone call for their follow-up appointment, and difficulties getting in touch with the clinic until they gave up. For example, one patient explained:

“I had to go all the way up ^{to the clinic} and then get tested for the same things literally, like, a week later…and I just remember, like, being frustrated…it should have been streamlined…I thought it was redundant.” (31, White, gay, linked to PrEP)

In general, patients found the process of having to attend botcan’t be informed about allh a primary care appointment and then a second appointment with HIV specialty care services as highly inconvenient. Several patients suggested creating a one-stop-shop where patients could see their PCP, get their blood work done, and see their PrEP doctor in one appointment or location. They indicated that this would reduce many of the logistical barriers such as coordinating appointment times, locating clinics, and transportation issues; all healthcare services could be accessed in one place and ideally, one visit. One patient explained how a one-stop-shop would be beneficial:

“The one-stop shop I think is also appealing because I would imagine that those who are working at that one-stop shop would be highly, you know, experienced and, you know, very familiar with the drug and the types of patients who are looking for that drug.” (30, Black, gay, eligible but not linked to PrEP)

As this patient describes, if this one-stop-shop went one step further by staffing providers who were trained and educated in PrEP specifically, it would also mitigate the other barrier of a lack of knowledge and education on PrEP.

Providers discussed encountering different, system-level logistical challenges than the patients brought up in their interviews. In particular, providers felt that clinic workload and staffing issues were the main logistical barriers to this intervention. For example, one provider explained:

“There are days where there's only one receptionist out there because they're short-staffed. So, I think a lot of times if there's patients pouring in, and you see a long line, you're just trying to check the patient in and do it as fast as you can. You don't really have the time to give out the (screener) to every single patient.” (Primary Care Medical Assistant)

Providers discussed how clinics that are short-staffed cause an increase in staff workload, which results in high demand for training new staff. However, there is oftentimes little supply of training due to time restraints.

“(New nurses) are not that familiar with (the study) …The nurses in the module filled them in, you know. And I had discussions with them. But it wasn’t the same as when you’re initially put into this pilot.” (Primary Care Administrator and Nurse)

This suggests that the cyclical nature of work environments with high staff workload is a barrier to this intervention. Providers felt that new staff members, in addition to having a lack of training, are also not familiar with the study and are likely less motivated to participate in the program.

Providers discussed a strategy that may overcome these salient barriers. Because staffing was a major concern, finding a way to make the screening process more effective and efficient came up often in provider interviews. One suggestion that providers had was to make this screening tool electronic or sent by mail prior to the appointment:

"It'd be great if when (patients) went up to the front and checked in, then at that time there was iPads that then they could hand to the patient, and the patient could go and sit down and fill out the questions on the iPad that then could be automatically uploaded… The other thing that you could do is send out mail. So, it could be sent - the questionnaire could be sent in advance in the mail." (Primary Care Doctor)

Both of the strategies suggested in this section, a one-stop-shop and using an electronic tool in screening, would improve the individual-level and system-level logistical barriers that both patients and providers brought up in these interviews.

Patients and providers had similar viewpoints on how knowledge about PrEP impacted their experience with this intervention. Both groups agreed that the provider’s lack of knowledge of PrEP was a significant barrier to being prescribed PrEP. Patients often said that they did not always feel that their providers explained PrEP comprehensively enough and some reported that they had to do their own research outside of their discussions with providers. For example, one patient explained:

“I know ^providers can’t be informed about all of the medication, and maybe he’s not well educated on (PrEP)  not well educated on , as well. But, I mean, if they knew something and were able to communicate it, that probably would help a lot, just giving more information, general information, or even cost information.” (39, White, gay, ineligible for PrEP)

Providers themselves seemed well aware of the lack of knowledge on PrEP among their peers and suggested that further training and education is warranted.

“There’s not a huge knowledge base…I think every single primary care physician should be able to—should be competent to screen for PrEP and prescribe it at the very least.” (Primary Care Doctor)

Further, providers were also open about their own lack of knowledge and expressed concern that others in the clinic may be similarly ill-equipped.

“I took the time to actually read the information (provided by the intervention) and I actually learned some stuff myself about PrEP that I didn't know. So, I can't really say how many of that staff or the rest of the department and what person actually went in and read the whole thing. They get busy, but you’re just making sure that they're really aware of what's going on.” (Primary Care Nurse)

Patients suggested that providers need to be able to educate future patients on the benefits of PrEP, and explain the costs and benefits of taking PrEP and the possible side effects and/or interactions with other medications. Patients highlighted how important it is that their providers specifically be educated about PrEP:

“I think all kinds of doctors, internal medicine, family medicine, they need to be educated about (PrEP)…so when they do that flyer, they can talk to the patient about it, and that's where they determine whether they're interested.” (31, White, gay, linked to PrEP)

One specific strategy suggested by patients was to ensure that providers training other providers to do the intervention have experience and expertise in prescribing PrEP. Again, patients felt it would be important that the trainers/educators themselves were members of the communities that this intervention is targeted to, particularly sexual minorities:

“I feel like you need PrEP educators…you need people who mirror the communities that you want to target.” (36, Hispanic/Latino, gay, linked to PrEP)

Providers’ lack of knowledge about PrEP was found to be a significant system-level barrier to the implementation of this intervention. While all providers staffed in the study clinics were offered an educational training on providing PrEP and the SLIP intervention by an experienced PrEP provider before implementation, knowledge gaps remained and suggest ongoing training is warranted.

Patient lack of knowledge of PrEP was also discussed in this study. A suggestion presented by patients to improve PrEP knowledge and education was to implement social support groups among patients who have experience taking PrEP.

“(Patients) could see actual people who are using it and benefiting from it and hear from first-person accounts and how it’s helping them protect themselves…that would be a good way of reassuring first-time users that this is a safe and effective treatment.” (37, other race/ethnicity, straight, ineligible for PrEP)

Social support groups may be beneficial to not only educate future potential patients on how PrEP works and their experience taking PrEP, but it would also cultivate a supportive environment of peers. This may also help to reduce stigma and judgment in the clinic, which was a barrier discussed earlier.