Provider Perspectives on Barriers to Routine HIV Testing of Adolescent and Young Adult Patients in Emergency Department Settings

Abstract

HIV testing rates among US youth aged 13–24 years are sub-optimal, with high rates of missed testing opportunities in emergency departments (EDs). We assessed barriers to routine HIV testing of youth in urban ED settings from the perspective of healthcare providers. Ten physicians and nurses were recruited from the pediatric and adult EDs at a high-volume hospital in New York City, USA to complete in-depth interviews to provide their perspectives on barriers to routine HIV testing of youth ages 13 to 24 in EDs. Interviews were conducted using a semi-structured interview guide with questions and probes. All interviews were conducted via Zoom due to the COVID-19 pandemic and were audio-recorded and transcribed verbatim. Transcripts were coded independently by two researchers using an inductive thematic analysis approach. Participants often offered HIV testing to youth in the ED based on their perceptions of patients’ HIV risk, with pediatric providers sometimes discouraging adolescents they perceived to be at low HIV risk from testing. Participants cited other priorities, logistics of blood-based testing, and discomfort discussing HIV as other reasons for not offering HIV testing to all youth in the ED. Efforts are needed to encourage providers to offer HIV testing to all youth regardless of perceived risk, as the ED often serves as youths’ only point of contact with the healthcare system. Emphasis on this and the importance of early detection, along with institutional change, clear guidance, and support for the testing process may help increase youth testing and avoid missed HIV diagnosis opportunities.

Introduction

Fourteen years after the Centers for Disease Control and Prevention recommended HIV testing for all USA patients aged 13–64 receiving care in healthcare settings, with limited exceptions,¹ HIV testing rates among youth ages 13–24 remain problematically low.² Less than 50% of US youth have ever been tested for HIV.^3–5 Twenty-one percent of all newly diagnosed HIV cases in the USA in 2018 occurred among youth aged 13–24 years.² Only 55% of youth with HIV are aware of their serostatus, making them the least likely age group to have diagnosed HIV infections.⁶ In a study among emergency department (ED) patients, adolescents ages 13–17 had four times greater odds of having an unknown HIV status compared to adults ages 25–34.⁷ Undiagnosed HIV infections facilitate onward transmission and propagate HIV within this population.²

Despite recommendations for routine non-targeted HIV testing, risk-based, targeted testing still largely occurs in healthcare settings, resulting in missed testing opportunities for youth who may not (appear to) fit into known risk categories.^7–9 Missed testing opportunities also occur among youth at elevated risk for HIV infection. For example, only 55% of youth receiving care for acute sexually transmitted infections (STIs) in large urban primary care clinics were tested for HIV.¹⁰ This is despite recommendations that all patients seeking evaluation and treatment for STIs be tested for HIV.¹¹ Youth often remain undiagnosed long after acquiring HIV as a result of such missed testing opportunities.^12,13

EDs are important venues for identifying undiagnosed cases of HIV as they often serve as the only or main source of healthcare for a sizeable proportion of the population including youth, and other “vulnerable urban populations.”¹⁴ Yet, research indicates high rates of missed HIV testing opportunities in EDs.^9,15 Patients are often treated in the ED several times before finally being tested for and diagnosed with HIV.^15,16 In a study of three EDs, 28% of newly diagnosed patients had a missed testing opportunity. A review of medical records from these patients’ prior ED visits revealed that 34% had documented HIV risk factors, 5% had AIDS-defining illnesses, and 4% had related diagnoses. Furthermore, 73% of the patients had non-specific symptoms consistent with HIV.¹⁶ As a result of missed opportunities, patients often have advanced HIV disease (e.g. CD4 < 200) at diagnosis.¹⁵

An important first step for ensuring that youth are tested for HIV when seen in clinical settings is offering them testing. A commonly cited reason for why youth have never been tested is not having been offered testing.¹⁷ Youth are more likely to be tested for HIV when their physician recommends it.^18,19 Youth, particularly adolescents, are the least likely age group to self-initiate HIV testing.²⁰ As such, it is important to identify and address factors that deter physicians from offering HIV testing to all youth.

The current manuscript explores barriers to routine HIV testing of youth in two urban EDs from the perspective of healthcare providers. Specifically, the paper explores reasons why providers do not offer routine HIV testing to youth seen in the ED, in an attempt to identify ways to increase HIV testing among youth.

Methods

Sample and data collection

A purposive,²¹ convenience sample of healthcare providers was recruited from the pediatric and adult EDs at a large, high-volume hospital in New York City as part of a Hybrid Type 1 Effectiveness-Implementation Trial²² testing the effectiveness of a technology-based intervention aimed at increasing HIV testing among youth in the ED. The trial is described in detail elsewhere.²³ Briefly, for the effectiveness component of the trial, 295 youth ages 13–24 were recruited and randomly assigned to one of two study conditions, with one group offered HIV testing via tablet computer and the other offered HIV testing by a research assistant.²³ For the implementation component of the trial, ten providers were purposively sampled, recruited, and interviewed by a research assistant, who was a member of the hospital staff, to enroll both physicians and nurses with a range of views on HIV testing in the ED. The sample size was determined a priori based on the study design, and the principal investigator’s prior experience conducting hybrid effectiveness-implementation trials in ED settings.^22,24 The providers were interviewed about their views on HIV testing and the feasibility of using the technology-based intervention to increase HIV testing of youth in the ED. All participants provided written informed consent prior to being interviewed. All interviews were conducted using a semi-structured interview guide that assessed providers’ views on HIV testing in the ED. Due to the COVID-19 pandemic, all interviews were conducted via videoconferencing in April and May 2020. Interviews lasted from 30 minutes to more than an hour, and participants received $25 Amazon gift cards for their participation. The study was approved by all governing Institutional Review Boards.

Data analysis

All interviews were transcribed verbatim. Transcripts were coded using an inductive thematic analysis approach.²⁵ Two researchers independently read five transcripts and developed a preliminary codebook, which was then refined in consultation by the two researchers. Using the finalized codebook, all transcripts were coded independently by two researchers using Dedoose Version 8.0.35 (SocioCultural Research Consultants, LLC; Los Angeles, CA). Coding discrepancies were discussed until consensus was reached. Once the coding was finalized, two researchers independently reviewed the coding reports to identify main themes. The current analysis addresses reasons why providers do not offer HIV testing to youth. Data for the analysis emerged primarily from the codes “ED testing environment”, “Testing teens and special populations”, and “Broaching/offering HIV testing”. The first author selected quotes that were representative of the themes to be included in the text. The quotes have been edited for clarity.

Results

Sample characteristics

The study sample consisted of six physicians and four nurses. The majority of providers worked in the pediatric ED (70%), were non-Hispanic White (70%), and were female (70).

The EDs where the study took place utilize an electronic medical record system that includes prompts reminding providers to offer HIV testing to patients. Providers presented several reasons for why they and their colleagues do not always offer HIV testing to youth patients despite such prompts. These included competing priorities, testing logistics, discomfort discussing HIV with youth, and low risk perception.

Competing priorities in the emergency department

One of the main reasons cited by providers was competing priorities. Most providers noted that the ED was a busy environment where they were concerned about dealing with patients’ primary medical concern in an efficient manner. HIV testing was a secondary and often overlooked concern as illustrated by the following quote from an adult ED physician:

The main reason most ER [emergency room] providers don’t test is that we just have so many other things that we’re thinking about and it’s such a busy environment that it feels like it’s not a big ask to ask a provider to just ask one more question, but it ends up being a big ask because with everything that you have to think about and remember in an emergency department where seeing patients quickly is important, getting them out of the ER is important, getting them medications is important, everything that you do is time sensitive and important, just adding one more thing to it, that to the provider doesn’t necessarily feel like an emergency is a big ask. So, the biggest barrier is just time or how much attention span you have.

Although providers acknowledged that they were expected to offer HIV testing to all patients 13 years and older, their main focus was on “sticking more to the issue at hand” (Adult ED nurse) and addressing the health issue that brought youth to the ED. For some providers, the added value of offering HIV testing to patients in the ED was unclear, as illustrated in the quote below from a pediatric ED physician:

Like any implementation in the ED, it’s all about workflow and resources and buy-in, so I think some knowledge of the potential utility of it would help. I don’t think we really understand whether it’s useful or not. […] I at this point have no attitudinal problem with offering it with thinking that it’s worthwhile. But since I don’t know its overall utility, if I’m in a pinch, I’m not necessarily going to ask it as convincingly as I should.

As a result of this lack of clarity on the importance of testing youth, as noted by the physician quoted above, HIV testing was often forgone in favor of other tasks that were deemed more important or offered in a way that might not necessarily be convincing to patients.

Some providers noted patients’ health complaints were often incongruent with HIV testing making it difficult for them to offer testing to youth. As stated by one adult ED physician:

…we don’t get into the details of how much risk they’re at, whether they’re at risk and how much risk they’re at because they’re there for something completely unrelated. Like I tripped and fell and my ankle hurts. So, then we don’t necessarily ask them if they’re sexually active and all that or whether they were tested already.

Generally, HIV testing was not seen as a priority in the ED by providers. While providers acknowledged its importance, they questioned the appropriateness of making it mandatory in the ED given that routine HIV testing should be a part of primary care and not emergency care. As an adult ED physician stated:

I think it’s important to us. If the emergency department is a place to offer routine tests or not, I’m not 100% sure. At least to be completely honest […] the decision I understand even though this is a primary care intervention, most of what we do at HIV level, most of our patient populations are not going to go for their primary care doctor appointments because they don’t have either resources or they don’t have access to health care or don’t have health insurance.

As the preceding quote illustrates, some providers acknowledged that although the ED may not be an ideal setting for routine HIV testing, it probably represents the only venue for some patients to be tested given their lack of access to primary care. Cognizant of this, one provider felt that as a prevention intervention, HIV testing should require a conversation between patients and providers, something that was not really feasible for providers to do in the ED given time constraints. As this pediatric ED physician explained:

…this kind of preventative work, it […] should take a little bit of time to sit and work with the patient. I just don’t think the physicians are going to be in a position from day to day, from hour to hour, to do it. […] It has to fit into the resources of the ED that you’re in. […]and I don’t think we always have enough staff to do it. So, when you’re responsible for a lot of tasks, discharge instructions, triage, whatever it may be, and sometimes they just don’t have the bandwidth to do it. So, I’m not sure our environment is perfect for anybody having it as a primary role.

Similar to the physician quoted above, several providers thought that offering HIV testing to patients was not necessarily their role. This often accounted for the test not being offered to patients. A few providers discussed the need for specific staff dedicated to HIV testing if testing was to be a truly routine part of the ED visit.

HIV testing logistics

Another reason why providers were reluctant to offer HIV testing to youth who were in the ED for reasons not related to HIV or sexual health were the logistics of the test itself. The study EDs did not offer rapid HIV testing, but instead required having blood drawn from patients. Providers often cited this as a major barrier to offering HIV tests to youth as illustrated by the following quote by a pediatric ED physician:

… if the patient’s already been in the ER for six hours and the parents are driving you crazy, they want to be discharged and they’re yelling at you that they want the discharge to happen and then all of a sudden you realize you haven’t offered [HIV testing] to them, it seems like the inappropriate time to then say, “Oh, by the way, would you like to stay another 20, 30 minutes so that we can draw [blood for] your HIV [test]?” So, you don’t bother at that point. It’s an awkward process […] it’s not really part of our flow. And it’s easier when the patient is getting blood drawn anyway, then you quickly remember, oh, yes. But if the patient isn’t getting blood drawn, it seems very clunky to all of a sudden say, “Do you want blood drawn?”

The blood draw required for HIV testing was viewed as being outside the routine workflow for most patients. It was also seen as “more invasive” (Adult ED physician) than other HIV testing methods, thus deterring providers from offering HIV tests.

Discomfort discussing HIV/HIV testing

Discomfort broaching the topic of HIV was another often-cited barrier to offering routine HIV testing to youth. Such discomfort pertained to discussing the need for HIV testing, particularly with younger adolescent patients. As one pediatric ED physician noted:

Well, it’s age dependent for the first thing. But then, I guess, if it’s somebody who’s clearly sexually active, […] then it’s easier. For the most part, it’s part of your interview, but then again, not always. I always ask about drugs and alcohol and what they’re doing in school, do they have a job, sexual activity. That just seems part of the interview. But somehow, do you want HIV testing, is not part of my regular interview. We generally think of it when it’s a sexually active adolescent, but not 100%.

As alluded to in the above quote, while providers were often comfortable discussing risk behaviors with youth, there was a reluctance to discuss HIV specifically. For some providers, the discomfort came from a feeling of not being well-equipped to discuss positive HIV test results with patients. This sentiment is illustrated below by an adult ED nurse:

And if you ask different people, they might feel differently about discomfort, about the conversation or maybe on the nursing end, maybe they don’t feel prepared to answer all the questions that can naturally follow, like, “I’m positive, what do I do?” There’s just basic sort of follow-ups like, if we tested you in the emergency room and you’re positive, is every nurse going to be able to give them some idea of, here’s what comes next kind of response.

For other providers, the discomfort came from the way testing was offered in the ED, as illustrated by the following quote from a pediatric ED physician:

Also, the way that it’s mandated, it’s just the question, “Do you want an HIV test?” Right. There’s no background, there’s no explanation. […] That is irresponsible in some ways to just offer the test without giving some background to the reason and why a person would want the test or would not want the test. Right? […] I think just the simple a mandate you have to offer the test is not reasonable.

The New York State HIV testing mandate referred to in the above quote requires that all patients be provided seven specific pieces of information about HIV before they consent to testing.²⁶ However, providers’ responses (as illustrated in the two preceding quotes) indicate a lack of awareness of this requirement. The concerns related to discussing HIV testing with youth underscore the need for staff to be well-trained in dealing with HIV testing, including being made aware of the requirements for testing and gaining a level of comfort engaging youth in discussions about testing.

Low risk perception

Another barrier to offering HIV testing to youth, particularly younger adolescents, was providers’ views that youth were at low risk for HIV. This is illustrated by a pediatric ED physician in the following quote:

Why should they have an HIV question thrust to them? For the patients who just say, okay, I’ll take the test, I’ll say, “Oh, but do you have any risk factors? Are you sexually active? Have you ever had transfusion? Any surgery?” They’ll say “No.” Then I’ll look at them and say, “So you have no risk factors, you really don’t need the test.” And they’ll say, “Okay.” So, you can see how quickly the question, can be reframed and how quickly the answer that they give you, whether it’s a yes to test or no, can also change, right?

As demonstrated by the above quote, not only did providers refrain from offering HIV tests to youth, but they also sometimes informed youth who agreed to be tested that they did not need testing due to their perceived low risk.

Discussion

Study participants were particularly candid about their reasons for not testing youth in the ED. Despite New York State law mandating offering HIV testing to all patients over the age of 13 regardless of perceived risk,²⁶ the providers in this study appeared to test youth based on their perceived level of risk, and were less likely to offer testing to youth they perceived to be at low risk. These findings from interviews with providers are in line with and help explain the overall low rates of HIV testing observed in our trial, in which 68% (200 out of 295) of youth participants were not offered HIV testing during their ED visit before being enrolled in our study.²³ This is also consistent with historical testing data obtained from the ED as part of our study²³ as well as with findings from previous studies in other ED settings.^8,9

A unique finding of the current study was that providers sometimes discouraged youth from testing when they believed them to be at low risk. This was particularly the case with providers in the pediatric ED who often believed that younger adolescents ages 13 and 14 were unlikely to be sexually active or engaging in activities that put them at risk for HIV. Yet, research from other ED settings shows that targeted testing based on perceived risk results in undiagnosed HIV. For example, Liggett et al. found that 38% of patients newly diagnosed with HIV would not have been tested via targeted testing.¹⁵ Furthermore, youth do not always disclose sexual or other risk behaviors to providers,²⁷ especially if parents are present. This is likely to be the case in the ED where providers might not have the opportunity to build rapport with patients, and parents may be reluctant to leave their children alone with providers.²⁸ Yet, study participants often took youths’ denial of sexual or other risk behaviors at face value in deciding that they did not need to be tested.

Consistent with prior research,²⁰ our study also revealed that discomfort discussing HIV, particularly with younger adolescents might deter providers from offering HIV testing to youth. Providers in our study reported generally discussing risk behaviors with youth during their ED visits, but a reluctance to discuss HIV specifically. The stigma attached to HIV may contribute to providers’ discomfort. New York State law mandates that patients be provided with seven key pieces of information before they consent to HIV testing including information about HIV testing, modes of HIV transmission, prevention methods and effectiveness of available treatment. The law allows providers to make the required information available to patients in writing (e.g. including them in the consent to be treated), or audiovisual form (e.g. posters or videos in the ED).²⁶ Using such tools could help facilitate testing by providing youth with much needed HIV-related information and easing both providers and patients into the discussion about testing. Routinization of HIV testing as a standard part of ED care may help reduce the stigma attached to HIV, further facilitating provider-patient discussions.

Given that youth whose providers talk to them about HIV are more likely to get tested,³ provider recommendation is a key driver of HIV testing.²⁹ For example, 82% of ED patients who agreed to be tested in one study would not have requested an HIV test if it had not been offered to them. Furthermore, most of the participants (75%) who tested HIV positive in the study would not have requested testing had it not been offered to them.²⁹ By offering testing and engaging youth in discussions about HIV, providers may help youths overcome their barriers to testing. Hence efforts are needed to encourage providers to offer HIV testing to all youth.

For study participants, addressing the health complaint that brought youth to the ED was their main focus. Some believed that patients would not be receptive to HIV testing especially if it was not related to their reason for visiting the ED and would involve a blood draw. Yet, research with youth from the current study’s ED indicated that the need for a blood draw unrelated to their primary concern would not deter most youth from accepting HIV testing.³⁰ While research indicates that some ED patients do decline HIV testing because they want to focus on their primary health concern, patients frequently do agree to testing.³¹

Providers’ views on the inappropriateness of routine HIV testing in the ED echo those reported in another study of ED providers in New York City. ²⁴ However, research indicates that youth see the ED as an appropriate venue for HIV testing.³² While providers see the value of routine screening as was the case with several study participants, in practice, they often disagree with the guidelines as they deem universal screening inappropriate for some patients (particularly younger patients and those they do not deem to be at risk).^8,33,34 Several study participants discussed HIV testing as something they were mandated to do even though they did not deem it to be necessary, valuable, or even appropriate. To increase youth testing rates in the study setting, there is a need to gain provider buy-in on the importance of testing all youth from age 13 regardless of perceived risk, as positive provider attitudes toward HIV testing programs and guidelines increase testing.⁹ Participants’ responses also suggested that although they were mandated to test all youth, the institutional practices and support necessary to facilitate such routine testing were not in place. Research indicates that “successful practice change toward routine HIV testing requires both a paradigm and a practice shift from providers, as well as institutions.”¹⁵ Based on participants’ responses, there is also a need to better incorporate HIV testing into the workflow in the ED, with clear guidelines on where, when and by whom HIV testing should be offered to youth. Studies from other clinical settings show that test rates are higher when incorporated into the standard of care.^35–37 Having clear testing guidelines in place increases HIV testing,³⁸ and may help overcome some of the providers’ reluctance to test. It is also important that institutional guidelines be consistent with state and federal testing guidelines.³⁶

The study had some limitations. Participants were recruited from a single hospital which uses blood-based testing; hence findings may not be generalizable to other ED settings, including those that use rapid tests for HIV screening. Furthermore, although we purposively sampled providers to capture a wide range of views on routine HIV testing of youth in the ED, the views of the 10 providers included in the study may not be representative of those of other providers in the study EDs. However, we achieved information redundancy with the 10 interviews, indicating data saturation.³⁹ Despite these limitations, the study provides important insights on barriers to youth HIV testing in the study EDs and highlights factors that need to be addressed to increase youth HIV testing.

Conclusions

Increased emphasis is needed on offering HIV testing to youth in ED settings regardless of perceived risk even when providers anticipate patients might decline or might not need testing. This includes emphasizing to providers the importance of routine testing for early detection.²⁰ This is especially important given that the ED often serves as youths’ only point of contact with the healthcare system and HIV infections that are not diagnosed in the ED may go undetected for years until youth develop symptoms.¹⁴ It is important to gain buy-in from providers on the importance of testing youth in the ED. Clear institutional guidelines that align with state and federal testing guidelines and provide the necessary structure and support for routine testing are also needed to make routine HIV testing an ED priority.³⁶ This will aid in early and increased HIV diagnoses among youth, particularly those who rely on the ED for healthcare.