Specialty Care Referral for Underrepresented Minorities Living with HIV in the United States: Experiences, Barriers, and Facilitators

Abstract

The increased incidence of chronic diseases among people with HIV (PWH) is poised to increase the need for specialty care outside of HIV treatment settings. To reduce outcome disparities for HIV-associated comorbidities in the United States, it is critical to optimize access to and the quality of specialty care for underrepresented racial and ethnic minority (URM) individuals with HIV. We explored the experiences of URM individuals with HIV and other comorbidities in the specialty care setting during their initial and follow-up appointments. We conducted qualitative interviews with participants at three large academic medical centers in the United States with comprehensive health care delivery systems between November 2019 and March 2020. The data were analyzed using applied thematic analysis. A total of 27 URM individuals with HIV were interviewed. The majority were Black or African American and were referred to cardiology specialty care. Most of the participants had positive experiences in the specialty care setting. Facilitators of the referral process included their motivation to stay healthy, referral assistance from HIV providers, access to reliable transportation, and proximity to the specialty care health center. Few participants faced individual, interpersonal, and structural barriers, including the perception of individual and facility stigma toward PWH, a lack of transportation, and a lack of rapport with providers. Future case studies are needed for those URM individuals with HIV who face barriers and negative experiences. Interventions that involve PWH and health care providers in specialty care settings with a focus on individual- and structural-level stigma can support the optimal use of specialty care.

Introduction

Recent studies indicate that chronic conditions, such as diabetes, hypertension, stroke, lung diseases, cancers, cardiovascular diseases, and neurocognitive disorders, disproportionately occur at higher rates in people with HIV (PWH) than people without HIV.^1–3 This rise in the incidence of chronic conditions among PWH has increased the demand for specialty care, with a recent study reporting an average of 16 hospital encounters in 2 years for PWH.⁴ Optimal use of specialty care for cardiometabolic disorders can result in improved patient outcomes and overall decreased health care costs through the efficient use of physician, hospital, and laboratory services.^5–9 However, referral to specialty care can have considerable access and cost implications for patients, including inconvenience, additional health care costs, and transportation costs. In addition to these pragmatic barriers, PWH may be reluctant to engage in medical care outside of their HIV provider because of experienced or anticipated stigma.¹⁰

Racial disparities in outcomes for HIV-associated comorbidities requiring specialty care referrals have been well documented.^11–14 For example, underrepresented racial and ethnic minorities (URM) face the highest comorbidity from HIV and cardiovascular disease nationwide.^11,15,16 Cardiovascular-related death rates among URM individuals are four times greater than among White individuals, yet URM individuals are less likely to receive a cardiology referral.^17–19 Further, URM individuals with HIV face more severe social determinants of health, such as poverty and discrimination.²⁰ However, whether these factors affect the specialty referral system and outcomes for comorbid medical conditions is poorly understood.¹¹ We posit that a greater understanding of the experiences of URM individuals with HIV when navigating the health system outside of HIV clinics will provide insights into the barriers and facilitators that interventions must address to reduce the burden of chronic disease and increase equity in care.

To that end, we used qualitative methods to elicit the experiences of URM individuals with HIV and other comorbidities with an emphasis on exploring the barriers that impeded their ability to complete their initial specialty care referral visit and follow-up visits and the facilitators that enhanced their ability to complete the referral visits.

Methods

We conducted a qualitative descriptive study using in-depth interviews as part of the Pathways to Cardiovascular Disease Prevention and Impact of Specialty Referral in Under-Represented Racial and Ethnic Minorities with HIV (PATHWAYS) study (NCT04025125).^21,22 Participants were recruited from Duke University Medical Center (DUMC), Vanderbilt University Medical Center (VUMC), and the Medical University of South Carolina (MUSC). Electronic medical records at the study sites were queried and used to identify potential participants. Participants were considered URM if they identified as American Indian or Alaska Native, Asian, Black or African American, and Native Hawaiian or other Pacific Islander.²³ Participants were purposively selected based on the eligibility criteria.²⁴ Participants were eligible if they had a diagnosis of HIV, had been referred to specialty care, were ≥40 years old, and had a diagnosis or elevated markers suggestive of cardiometabolic conditions (e.g., hypertension, diabetes, elevated total cholesterol, low high-density lipoprotein cholesterol, or established cardiovascular disease).

The interview guide was developed by a study team that included patient investigators familiar with the challenges of managing comorbidities in PWH. Questions were informed by the Specialty Referral Process Framework.²⁵ The referral process framework has six components: referral decision, referral tracking, entry into specialty care, information transfer to specialists, information transfer from specialists, and care integration. For this study, we focused on one of the six components of the framework: participants’ engagement and experiences with entry into specialty care along with barriers and facilitators of the referral process (Supplementary Data S1). This component was selected as it represented part of the referral process that PWH (who had to have been referred) were more likely to actively engage in and hence share their lived experiences. The study team met in-person for 3 days to review the interview guide where amendments were appropriately made to refine the questions before data collection. This study was approved by the DUMC Institutional Review Board (IRB) as the IRB of record for VUMC and MUSC through a single IRB reliance agreement. All procedures involving human participants were performed in accordance with the Declaration of Helsinki, and written informed consent was obtained from all participants included in the study.

Data collection

To increase participation, participants were identified in the electronic medical records using the eligibility criteria and were informed of the study by their providers during routine clinic visits, and if agreeable, they were approached by study staff who described the study in more detail and assessed their interest in providing consent to participate. After obtaining written informed consent, trained interviewers from each of the three sites conducted in-person or telephonic interviews depending on the participants’ preference between November 8, 2019, and March 10, 2020. Interviewers administered a brief demographic survey followed by interview questions, which were audio-recorded with participant permission. All interviews were first transcribed verbatim following a transcription protocol.

Data analysis

We used descriptive statistics to summarize the demographic data and applied thematic analysis to analyze the interview data.²⁶ As our goal was not to establish differences in themes at individual sites, we conducted a pooled analysis. We then used a multi-stage deductive and inductive analysis approach.²⁶ First, two analysts independently applied structural codes that were primarily based on the specific interview topics using NVivo 12, a qualitative data analysis software program.²⁷ Inter-coder agreement was assessed on 20% of the transcripts to ensure consistent application of the codes. Discrepancies in code application were resolved through discussion, and edits were subsequently made to the structural codebook, with transcripts recoded as needed. The analysts then created a content codebook by reading the structural coding reports and inductively identifying codes that reflected participants’ experiences in the following areas: (1) impact of HIV status on specialist visit experience, (2) facilitators to attending the initial and follow-up specialist appointments, and (3) challenges to attending the initial and follow-up specialist appointments. Analysts reviewed the content coding reports for each category to identify and summarize the most frequently mentioned findings in each of these categories. This work was conducted in line with the Consolidated Criteria for Reporting Qualitative Research checklist (Supplementary Table S1).²⁸

Results

We interviewed 27 URM individuals with HIV. Cardiology care was the most common specialty care referral (n = 12), and almost half of participants were between the ages of 50 and 59 years (n = 13). The majority of participants were male (n = 18), were Black or African American (n = 21), and had public insurance (n = 16) (Table 1).

Table 1.

Demographics of Underrepresented Racial and Ethnic Minority Individuals Living with HIV

Variable	n = 27
Site
Duke University Health System	7
Medical University of South Carolina	10
Vanderbilt University Medical Center	10
Specialty referrals
Cardiology	12
Endocrinology	7
Pulmonology	4
Nephrology	2
Neurology	2
Age, years
40–49	6
50–59	13
60–69	7
70–79	1
Sex
Female	9
Male	18
Race and ethnicity
Hispanic Blacka	1
Hispanic Whitea	2
More Than One Raceb	3
Non-Hispanic Black or African American	21
Sexual orientation
Straight	13
Gay or lesbian	12
Bisexual	1
Other	1
Marital status
Single	14
Married or partnered	7
Separated	1
Divorced	2
Widowed	1
Highest level of education (missing 1)
11th grade or less	8
High school or General Educational Development	10
Some college or technical school	3
Two years of college or technical school	1
College (Bachelor of Arts/Bachelor of Science)	3
Master’s degree or higher	1
Current employment status
Full-time	9
Part-time	3
Disabled	10
Full-time stay at home caregiver	2
Retired	2
Other	1
Type of health insurance
Publicc	16
Private	6
Combination of public and private	4
None	1
Other health conditions
Hypertension	10
Diabetes	10
Elevated total cholesterol	5
Elevated LDL cholesterol	5
Tobacco use	2
Other (sleep apnea)	1

^a Two female patients identified as Hispanic or Latino and White; one male patient identified as Hispanic or Latino and Black.

^b African American/Black or American Indian or Alaska Native (n = 2); African American/Black, American Indian or Alaska Native, or White (n = 1); and missing data (n = 1).

^c Public insurance includes Medicare, Medicaid, and Ryan White HIV/AIDS Program.

LDL, low-density lipoprotein.

Impact of HIV status on specialist visit experience

For nearly all participants, specialty clinic staff and/or provider knowledge that the participant was living with HIV did not negatively affect their experience in specialty care visits. Participants described how the staff and/or providers’ professionalism and care while explaining relevant information made them feel welcomed and treated similar to other patients:

That everybody—you’re treated with respect. It’s not like you’re walking around with a badge on your head that says, hey, I’m HIV positive, and people don’t want to interact with you. And so, it makes me feel better that everybody treats me the same. (Non-Hispanic Black male, 44)

Well, she did congratulate me on my count. And how she did it, “You’re doing good,” and she was just telling me that if I wanna go see a psychiatrist there, she can set it up, and I told her I was already connected. And she was real compassionate about it, and she was real straightforward. (Non-Hispanic Black female, 51)

Participants also described feeling comfortable when providers focused on the reason for the specialist appointment rather than their HIV status, observing that their specialist and HIV care providers communicated with each other to coordinate care and that their HIV status was viewed as just another pre-existing condition:

It [HIV status] doesn’t even seem like that had ever come up as an issue. That’s not why I’m there, and it’s not like that’s even being brought to make you feel like you’re being singled out for that. That’s how I feel. (Non-Hispanic Black male, 44)

Because when I was at the cardiologist, he wanted to make sure that the infectious disease [provider] knew what he was doing. So, that’s a great thing for me because I have the benefit of both worlds … and both of them want you to do the best, do it better, get better. (Hispanic Black male, 53)

A few participants, however, explained that staff and/or providers’ awareness of their HIV status negatively affected their specialist visit experience. Sources of discomfort included, for example, being concerned about disclosing HIV status to a new provider, not feeling welcomed or comfortable because they felt judged by clinic staff (e.g., perceiving changes in demeanor and body language during interactions with clinic staff once HIV status was revealed), and/or feeling that their HIV status affected their interaction with the specialist:

It was just uncomfortable. It was like, how can I express it? It’s like if somebody all buddy-buddy but then when you tell them and they like oh, take a couple steps back but then still trying to play it cool. It was that type of feeling. And it was like, wow. Really? It was like an atmosphere change. (Non-Hispanic Black male, 51)

Well, like I said, once they looked at my charts, they—the receptionist—so, they look up there and see all that, they—everything just changed with them. But like I said, unless you are really just acquainted with it and know what’s going on, it’s, yeah. It could be a problem like that, yeah. (Non-Hispanic Black male, 57)

In addition, some participants described previous experiences with HIV-related stigma with other non-HIV specialty providers. These participants said it is difficult to find providers who are comfortable working with PWH:

I went to this doctor’s office, and I guess one of them nurses must have seen on my chart that I had HIV because she put three pair of gloves on. I started to curse that bitch out. “This is your job!” She was looking down. “This is your job.” You need to find another profession, right or wrong. I really wanted—I was too sick. I didn’t feel like it. If you feel like that—what they call that? That’s stigma. (Non-Hispanic Black female, 61)

I went to one local doctor in my town, and I felt like just the way he came into the room, it was like he was going into a hazardous situation, and you can pick up on that sometimes. And so, I thought, “Well, if I got into an accident or something, I wouldn’t wanna go to him.” I just wouldn’t because I did not feel comfortable. And so, I would think a lot of people would experience that same thing. (Non-Hispanic, race unknown, male, 57)

Facilitators to attending the initial and follow-up specialist appointments

All participants said they successfully completed their initial specialty care visit. Nearly all had at least one follow-up visit, which most of the participants were able to successfully attend. About a quarter of participants noted that although they did ultimately make it to the follow-up visit, they occasionally needed to reschedule because of life circumstances, scheduling conflicts, or health reasons, such as not feeling well or being hospitalized.

Participants generally described two main facilitators that helped them keep their initial and follow-up specialist appointments.

Perceived importance of specialty care

More than half of participants described that they were motivated to engage in specialty care because they perceived it to be important for their health. Participants elaborated that they attended the initial appointment specifically to seek information about their condition, understand the symptoms they were experiencing, and learn about steps they could take to improve their health. Some participants described the initial specialty care visit as “urgent,” “necessary,” or “important” or that they had “no choice” to keep their medical condition under control:

It wasn’t hard for me to go to the heart doctor at all because this is what I wanted to do. I wanted to make sure I was in good health and my heart was all right. I wanted to make sure everything was okay with me. (Non-Hispanic Black male, 69)

I just want to make sure that I know what was going on. Know what I need to do, what I don’t need to do to make it any worse. Saying, “Hey, man. I can do better than this. I can fight this. What do I need to do? Point me in the right direction. Give me the information. Let me figure some things out.” So, just doing it from that point of view, it just keeps me going. So, I said I have to find out the right thing to do and how to do it. (Hispanic Black male, 53)

Similar sentiments were expressed by participants when describing the reasons for attending their follow-up appointments. Specifically, participants described being motivated to continue follow-up care to learn more information about whether their condition was improving or worsening and whether they should take additional steps to maintain their health. A participant elaborated that their motivation to stay healthy was driven by their desire to continue caring for a family member:

Like I said, just to make sure that I’m doing everything right. And to make sure that I got everything going in the right direction that it needs to be going in, and that nothing else popped up. Make sure that everything was still the same and functioned the way they’re supposed to. So, that’s my basic thing. I just want to keep everything going in the right direction. (Hispanic Black male, 53)

One way or another, again the motivation and doing what I have to do to stay in good health so I can take care of my mother. It plays a big part. (Non-Hispanic Black male, 51)

Accessibility and convenience

Participants explained that attending the initial specialty care visit was facilitated by either being able to proactively select a specialist at a nearby location or being referred to a specialist who was located close to their home. Other factors that increased specialist accessibility for participants included familiarity with the location if the specialty clinic was in the same medical center as most of their other health care appointments, as well as having the HIV care provider facilitate the referral as this would eliminate the need for the patient to worry about whether the specialist visit would be covered by insurance:

It makes it easy—she was not too far from where I live. I live off of [street name] and she work off of [street name]. That ain’t but a skip and a jump. (Non-Hispanic Black male, 58)

As far as my insurance, I mean, I would say having a referral made it easy. Not choosing the specialist myself. (Non-Hispanic Black male, 60)

For follow-up appointments, having appointments fit into their schedules facilitated participants’ ability to complete visits. Access to transportation was an important facilitator as participants commented that they were able to use their own vehicle to get to specialist visits or they could borrow a vehicle from someone else, find someone to bring them, ride the bus, and/or afford gas money. Several participants described comfort with the specialist and familiarity with the health system as factors that made it easy for them to return for appointments. Few participants noted that they trusted and/or had good rapport with the specialist, whereas another participant commented on the friendliness of the front desk staff at the specialist’s office and described that they enjoyed interacting with them:

I have options of setting dates and times that would work with me to not interfere with my daily routine. It was very easy. No problem whatsoever. Because the option of timing to go—they had so many dates and times. So, there was surely to be some fit. (Non-Hispanic Black male, 58)

Challenges to attending the initial and follow-up specialist appointments

Participants generally described facing different challenges in attending their initial and follow-up specialist appointments.

Initial appointment

Most participants said they did not face challenges attending the initial specialist visit. Participants who faced challenges reported scheduling and transportation as the main barriers to attendance. This included, for example, a lack of reliable transportation and an inability to afford travel costs, appointments not fitting into the participant’s schedule, challenges related to scheduling additional diagnostic testing in conjunction with the initial appointment, and a lack of motivation owing to already having many doctor appointments:

The only challenge was that I had two MRIs back-to-back. I had one for the brain first, and within that 24-hour period another one was scheduled, but there was a schedule conflict. And it was just two conflicting tests. (Non-Hispanic Black male, 44)

I was sick of looking at doctors and wasting my time, and they give me the time when the Price Is Right comes on. I was just making—I just didn’t wanna go to another doctor. I got too many doctors. (Non-Hispanic Black female, 51)

Emotional well-being, such as fear of receiving bad news about their health, also played a role in several participants’ willingness to attend the first specialist appointment. A participant described that not feeling well, mentally or physically, impacted his ability to complete the referral:

Listening to him talk about what kind of heart disease I had and, you know, a person don’t really wanna hear that stuff that their heart’s goin’ bad… (Non-Hispanic Black male, 57)

Getting there if I didn’t feel good or wasn’t in no good mood or something like that. If I wasn’t feeling bad, I would have come, but when I don’t feel like it, I just want to lay there and be, I just lay there and reschedule. (Non-Hispanic Black male, 62)

Follow-up appointments

Two-thirds of participants said they experienced difficulties in attending their follow-up visits. Scheduling difficulties was the most common reason mentioned. Participants explained that it was hard to schedule appointments around work and their other commitments. Several participants, however, also expressed concern with how the specialist’s office handled scheduling. These concerns included long wait times to get a follow-up appointment, the appointment being rescheduled without their input, and finding out that that their appointments were double-booked. A couple of participants also pointed to aspects of inconveniently scheduled appointments that made them less likely to attend, such as difficulty getting to appointments early in the day and being overly fatigued if multiple appointments are scheduled on the same day:

Yup, seeing a doctor every two or three weeks [made it difficult]. Being able to make the appointments and stuff like that because I work. And when they would set the appointments, they would sometimes be on days that I needed to be on the job, and that made it difficult. And I understand I’m supposed to see them, but they weren’t gonna pay my bills. So I had to work. (Non-Hispanic Black male, 57)

If they would space them out a little bit. Sometimes, I have two in one day. If they would space them out. I have to get up and go back to back every day. I can do one day, stay home, and chill, and maybe go back again a couple days later for another appointment, or maybe next week, and still have them. Two appointments in the same day [are physically and mentally tiring]. (Non-Hispanic Black male, 66)

Some participants remarked that transportation difficulties sometimes complicated their ability to attend follow-up appointments, periodically resulting in the need to reschedule. This included difficulties related to having to wait on a rideshare service and the cost of traveling to the specialty clinic:

Transportation. Sometimes transportation makes it hard. I call the medical van. It takes me around and stuff like that. But the thing is you have to wait and wait. Because not only is it you, it’s other people in there with doctors’ appointments. It’s just—it’s a hassle. Like the last time I was here for my HIV appointment, my appointment was at 2:00. It was over at 2:45. I was here until after 6:00 waiting on transportation to come and pick me up. (Non-Hispanic Black female, 57)

For a few participants, issues related to the specialist experience were sufficiently aversive that it affected their willingness to return for follow-up visits. Some participants did not like their treatment, primarily for reasons such as side effects and discomfort. A lack of rapport with the specialist also led some participants to feel that their concerns were not taken seriously or were judged, which reduced patients’ motivation to keep their follow-up appointments. For example, a participant described discomfort with seeking follow-up care because of their previous negative experience with the specialist and the perception that their health concerns were not taken seriously:

They had me on atorvastatin, and it was causing me to have severe muscle cramping where I would hardly be able to walk to get to the bathroom or anything. I would be cramping up. And it was like—I told the pharmacist, and the pharmacist said, “Did you notice a change in your urine?” And he told me to stop taking it because he said it was deteriorating my muscles and about—and so, I told [the specialist] about it, and he’s like, “Oh, well, maybe you should still take it.” (Non-Hispanic Black male, 57)

It was scary. I didn’t feel comfortable. I remember that’s when I had the stent put in. And I told him that it felt like my chest is scratchy. And he kinda blew it off. I wasn’t pleased with that doctor at all. Well, it was kind of like a blowoff. He’s like “oh, you’re fine. You’re fine. I did a great job” and whatnot. (Non-Hispanic Black male, 51)

Other barriers mentioned by participants included the burden of out-of-pocket payment, personal reasons, such as not making follow-up specialty visits a priority, and not finding follow-up appointments to be useful if participants perceived that their health had improved:

[And having to pay for the appointment out of pocket] because a lot of doctors don’t take certain insurance, and mine don’t cover a whole lot. (Non-Hispanic Black male, 57)

After I go to you the first time, in my mind, I’ll be thinking, “I would go to the appointment,” but all my specialists’ appointments, I kinda put them on the back burner because on what I got to do that day. Because when they schedule it, I’m not thinking when stuff comes up. So, when the day come and I have something else planned, because my specialists are secondary to me. Like I say, they’re just not on my priority list. (Non-Hispanic Black female, 54)

Discussion

There is an increasing need to consider non-HIV-related specialty care, yet there is scant research on how to optimize access for URM individuals with HIV to reduce disparities in outcomes for HIV-associated comorbidities. This qualitative study explored lived experiences, perceived barriers, and facilitators of the referral process to specialty care for common chronic conditions among URM individuals with HIV.

The majority of participants reported positive experiences during their specialty care visits. As the HIV epidemic has evolved from a fatal disease to a chronic one, it appears that attitudes toward PWH have also changed. As PWH live longer and seek specialty care for comorbidities, the health care providers and staff in these settings may have become more comfortable in their interactions with PWH. This may also be because their HIV providers are involved in the referral process by choosing specialty care providers who have experience working with PWH as reported in a recent study.¹¹

Notably, several participants had negative experiences with how they perceived they were treated at the specialty clinic. Perceived stigma by staff and providers at the specialty clinic was mentioned, whereas others pointed to the demeanor they experienced when treated. HIV stigma in health care settings has been reported previously in other non-HIV treatment settings.^29–31 Other researchers have also reported that PWH may be reluctant to engage in medical care outside of their HIV provider because of experienced or anticipated stigma.¹⁰ Although these issues were reported by a minority of participants, future research should use the qualitative case study approach to better understand those who report negative experiences. Case studies can be useful as they provide an in-depth appreciation of the negative experiences and their drivers.^32,33 Further, as the demand for specialty care increases for PWH, interventions, such as HIV stigma reduction training, are needed at specialty care settings for nonclinical and clinical staff.^34–36 Interventions that involve PWH and health care providers may hold promise with a focus on individual- and structural-level stigma.^37,38

Most participants identified facilitators at the individual, provider, and health system levels that supported the completion of their initial and follow-up appointments. Participants’ motivation to stay healthy, appointment coordination between their HIV providers and specialists, and a reduction in structural barriers, such as access to specialty care, facilitated keeping appointments. For some participants, perceived stigma, competing priorities, including care for other comorbidities, a lack of rapport with specialty care providers, and out-of-pocket costs were some of the barriers faced in completing specialty care appointments. Access to reliable transportation was both a facilitator and a barrier for some participants.

Participants said that their HIV provider’s facilitation of the referral process, which included selecting specialists who would accept their insurance coverage and whose services were in close proximity to the participants’ home, was critical to their completion of the initial referral appointments. In a recent study at the same study sites, HIV providers reported that they relied on personal networks of specialists (cardiologists) with experience caring for PWH.³⁹ Given that the majority of participants in this study had public insurance, which is associated with reduced rates of referral completion, HIV providers’ facilitation is critical in reducing access barriers.⁴⁰ A better understanding of the effectiveness of this facilitated referral process is needed. For example, future research should compare if there is a difference in referral completion rates and comorbidity outcomes between URM individuals with HIV who receive the facilitated referral by their HIV providers and those who navigate the process on their own.

Participants faced multiple hurdles in securing follow-up appointments, including a lack of appropriate appointment times, long wait times, frequent appointments for other comorbid conditions, out-of-pocket costs, and a lack of transportation. These barriers may be related to the disparities related to social determinants of health, such as economic stability, neighborhood effects, and access to health care among URM individuals.¹¹ In this study, HIV providers’ referral facilitation was not mentioned in the specialty care follow-up visit. The lack of facilitation in the follow-up visits may explain why there were more barriers documented in the follow-up visits compared with the initial visit. Interventions, such as use of coordination tools, from primary care to specialty care may be adapted for HIV providers to reduce barriers in the specialty care referral process.⁴¹ Use of telehealth in specialty care, especially for follow-up appointments, may reduce some of the barriers found in this study. For feasibility, it is worth noting that use of telehealth has been found to be acceptable in HIV care settings with positive outcomes, such as improvements in physical and mental health and care engagement.^42,43 In addition, it is worth noting that this study occurred before the COVID-19 pandemic.

The study findings should be interpreted in light of several limitations. Even though participants were reassured that their responses would have no impact on their clinical care to limit social desirability bias, they may still have been inclined to respond in a positive manner. The data only represent participants who had been referred and completed their referrals. Those who were referred and did not complete their referrals may have faced different barriers, which this study does not present. The perspectives presented in this study were from URM individuals with HIV at three academic medical centers with the benefit of comprehensive campuses for health care delivery; therefore, these findings may not be generalizable to other health systems where PWH must do much of their own health care navigation.

Despite the limitations, this study contributes to a growing body of literature on care for comorbidities among URM individuals living with HIV. Another strength of the study was the role of patient investigators, who were familiar with the challenges of managing comorbidities in PWH, in the study design and data analysis. Finally, the findings of this study reflect the experiences, barriers, and facilitators of referral in a diverse group of specialty care settings used by URM individuals with HIV.

In conclusion, this study found that the majority of participants interviewed had positive experiences in the specialty care setting. Several participants faced individual, interpersonal, and structural barriers to the referral process. Interventions that involve PWH and health care providers in specialty care settings with a focus on individual- and structural-level stigma can support the optimal use of specialty care. With the wide use of telehealth, future studies should also evaluate its impact on the barriers found in this study.

Authors’ Contributions

C.M. conceived the study. C.M., A.C., G.S.B., C.D., E.G.M., N.L.O., C.T.L., S.G., M.L., and A.C.P. helped with the design and interview guide development of the study. T.S., C.D., A.C., and C.M. analyzed the data. C.M. drafted the article. A.C.P., A.C., G.S.B., C.D., E.G.M., N.L.O., C.T.L., J.V., M.L., S.G., and revised the article critically. All authors gave their final approval of the version to be published.

Author Disclosure Statement

C.T.L. has served on an advisory board for Esperion Therapeutics and has received research funding from Gilead Sciences. The authors report no real or perceived vested interests related to this article that could be construed as a conflict of interest.

Funding Information

This work was supported by the Pathways to Cardiovascular Disease Prevention and Impact of Specialty Referral in Under-Represented Racial and Ethnic Minorities with HIV study R01MD013493 (G.S.B.). C.M. was also supported by K01HL159052 and P30 AI064518 and P30AI064518. A.C.P. was also supported by P30 AI110527.