HIV self-testing knowledge,attitudes,and acceptance in New York City

Abstract

Background

HIV testing is a critical strategy for prevention. During the COVID-19 pandemic, many community-based organizations (CBOs) offering free HIV testing were unable to provide in-person services. Innovations like free HIV Self-Testing (HIVST), provided a solution and can be done outside clinical settings, help address barriers such as cost, availability, and stigma. However, HIVST uptake remains low in resource-rich settings like the US, and best practices for integrating it into existing HIV services are still undetermined.

Methods

Gay Men’s Health Crisis (GMHC) partnered with the NYC Health Department (NYCDOHMH) to distribute free HIVST kits. From April to February 2023, survey data was collected to assess client barriers and HIVST’s role in a differentiated service model.

Results

The survey had 201 participants, 151 in the in-person testing group and 50 in the at-home group. The study revealed that 34.7% of in-person respondents were unaware that HIVST was an option. In-person testers were less likely to trust an HIVST test result compared with an in-person test result, and all testers were more likely to choose the same method they previously used. Nevertheless, there was interest in HIVST: 24% of in-person testers indicated interest in HIVST for their next test.

Conclusions

HIVST can supplement in-person testing in settings with fragmented healthcare systems and limited continuity of care. Respondents demonstrated low awareness but notable interest in HIVST, suggesting its potential to improve access, particularly for populations more likely to use it than in-person options. Further research is needed to optimize HIVST implementation within existing service models.

Keywords

HIV Self-testing community based organization prevention testing point-of-care testing

Introduction

The HIV/AIDS epidemic continues to affect millions of individuals across the globe with 40 million people currently living with HIV in 2023.¹ Advances in testing and treatment options have helped decrease HIV morbidity and mortality significantly with a 51% reduction in AIDS related deaths from 2010 to 2023.¹ However, the reduction of HIV incidence continues to be a priority.² Testing continues to be an effective prevention tool in combatting the spread of new HIV infections and investing in new testing modalities continues to be a growing area in HIV prevention research.³

At-home HIV testing, also known as HIV self-testing (HIVST), has existed since 2012 in the United States (US), when the first and only FDA-approved over-the-counter rapid HIV test (OraQuick) became available.^4,5 Most clinical trials surrounding HIVST have been conducted abroad in low-resource settings where access to gold-standard antibody, antigen, and RNA testing may be limited.⁶ Given the many barriers to long-term patient-provider relationships that exist within the United States, including prohibitively long wait-times, inadequate insurance coverage, and open access scheduling (i.e. patient sees the next available provider), patients seeking sexual health care are left to navigate an impersonal and inaccessible healthcare system. Historically under-resourced and unindustrialized countries have developed innovative methods to address such challenges within primary care that could potentially be adopted in the US: specifically, widespread access to and acceptance of HIVST, which can enable increased access to testing, reduce stigma, and decrease the costs associated with testing.

HIVST can help eliminate barriers to testing, such as lack of transportation, limited testing center hours, stigma, and confidentiality concerns.⁷ Simply showing up for in-person HIV testing can carry stigma and create a barrier for some individuals, especially those who are first-time testers and those who may not fall into the typical or expected demographic groups such as men who sex with men.^8,9 A cross-sectional study of the US has shown that heterosexual men have the lowest rates of HIV testing.¹⁰ By allowing individuals to test for HIV at home, some of the stigma that often deters individuals from testing in person might be reduced.¹¹ In addition, while current in-person HIV testing options also often involve having an in-depth discussion with a testing counselor who can answer the individual’s questions and provide emotional support, these sessions themselves might be a barrier. Despite the benefits of counseling, individuals may find conversations surrounding their sexual health to be judgmental or uncomfortable.¹² Thus HIVST may be a more comfortable experience for some testers and lead to more individuals testing for HIV.

HIVST can be used as a tool to increase testing rates among key populations who may be particularly concerned about stigmatization or limited by barriers to clinic access. A study from the Men Who Have Sex with Men (MSM) Testing Initiative showed that HIVST kits were five times more likely to reach first-time testers than traditional clinic-based testing.¹³ This can be helpful given 40% of new HIV infections are transmitted from people who are unaware of their HIV status.¹⁴ By increasing rates of testing, HIVST can identify individuals living with HIV and subsequently reduce HIV incidence and limit community spread.¹⁵ Despite these benefits of HIVST, there continue to be some concerns surrounding mainstream adoption; namely, lower test sensitivity, test result reporting and tracking, and difficulty in providing an immediate linkage to care.¹⁶ The OraQuick HIVST has a sensitivity rate of 92% compared to most lab-based tests which have a sensitivity rate greater than 99%.¹⁷ These concerns impact CBO implementation and are often significant sources of hesitation when discussing HIVST expansion. Despite these drawbacks HIVST can still offer a net benefit by reaching individuals who may not otherwise test.^11,16

Despite the potential benefits of HIVST in the US, there is little research examining whether individuals who frequently test for HIV are even aware that HIVST is an option. This study aims to evaluate community perceptions and awareness of HIVST and tester receptiveness to HIVST and elucidate the factors that influence utilization of different test types. Such an understanding can guide future considerations for how to incorporate HIVST into current service models.

Methods

A cross-sectional study was conducted utilizing a voluntary anonymous survey administered to two groups. Participants were recruited from Gay Men's Health Crisis (GMHC)’s testing center in Manhattan, New York; the center provides free HIV and STI testing, counseling, and education and thus eliminates potential barriers such as cost and insurance status. GMHC serves any individual who would like STI testing, however the main demographic accessing these services are cis-gay men. The first group, in-person testers, was comprised of individuals who tested in-person at GMHC’s testing center in Manhattan, New York. The second group, at-home testers, consisted of individuals who requested an HIVST kit through GMHC’s website. Individuals in the in-person group were recruited in GMHC’s waiting room where they were handed a flier with a QR code advertising the study. Potential participants were informed that participation in the study would not affect the care they received at the center. Participants in the at-home group were recruited via email 2 weeks after requesting their HIVST kit. This allowed the client to receive and use the kit prior to answering the survey. All participants provided informed consent before beginning the survey. The survey was only offered in English and was restricted to respondents who were above the age of 18.

The survey was developed by a multidisciplinary team including testing counselors at GMHC and survey designers at the Icahn School of Medicine at Mount Sinai (ISMMS) included questions related to respondent demographic, the respondents’ knowledge and previous use of HIVST, perceived appropriateness of follow-up after HIVST, and the factors that led the respondent to test either in-person or at home at the time of the survey. Respondents were then asked five question-pairs (a-questions and b-questions) regarding their attitudes about different aspects of HIV testing (Table 1). The survey concluded by asking the participants to state whether they would test in person or at home for their next HIV test. All data was collected via secure online form and did not include any personally identifiable information. Over 500 at-home testers were emailed the survey, and roughly 2000 in-person testers saw the flyer in the waiting room. Participants were not compensated for participating in the study. Descriptive statistics were obtained from the datasets. Fisher’s exact test was used to compare the demographic proportions of each group. Mann-Whitney U tests were used to compare Likert scale (ordinal data) responses. An odds ratio was calculated for future testing preference, and multivariate logistic regressions were performed to control for variables such as gender, sexuality, frequency of testing, and prior knowledge. All statistics and plots were performed in R (version 4.5.0) or in Python (3.10.8). All aspects of this study were approved by the ISMMS institutional review board and this study is being reported using the STROBE guidelines.

Table 1.

A- and B- survey questions on factors influencing testing type choice.

A-questions (factors)		B-questions (preference)
1) How important is having a testing counselor present to provide emotional support for an HIV test?	1: Not important at all	When considering this factor, which testing method would you prefer?	1: In-person testing
2) How important is having a testing counselor present to answer questions and provide referrals?	2: Low importance	When considering this factor, which testing method would you prefer?	2: Some preference for in-person
3) How important is completing a pre-test interview (sexual-history and counseling) before the HIV test?	3: Indifferent	When considering this factor, which testing method would you prefer?	3: Indifferent
4) How important is the collection method of your sample (taking your own sample vs. having a test counselor obtain it) for your HIV test?	4: Somewhat important	When considering this factor, which testing method would you prefer?	4: Some preference for self-testing
5) How important is convenience to you when getting an HIV test?	5: Very important	When considering this factor, which testing method would you prefer?	5: HIV self-testing

Results

From 1 May 2022 to 8 February 2023, 151 survey responses from the in-person testers groups and 50 responses from the HIVST group were collected. The median age was 35 years (IQR 27-39) for in-person respondents and 36 years (IQR 27-47) for the at-home group. Most respondents in both groups were cis-men: 90% (n = 136) of the in-person group and 70% (n = 35) of the at-home group. However, the gender distribution was statistically different (χ2 = 20.71, p < .001) with the CHTG group having a higher proportion of cis-women and transgender individuals. Additionally, 75% (n = 114) of in-person respondents and 56% (n = 28) of at-home respondents identified as gay. The majority of respondents had some insurance (71% (n = 107) in the in-person group and 76% (n = 38) in the at-home group) and had tested previously, with only 7% (n = 10) of in-person respondents and 4% (n = 2) of at-home respondents being first-time HIV testers (Table 2).

Table 2.

Demographics of Survey Respondents * = required question, **multiple response questions (responses may sum more than n).

	In person (n = 151)	At home (n = 50)
Age (years), median (IQR)	35 (27–39)	36 (27–47)
Gender identity**
Cis-woman, n (%)s	7 (5%)	10 (20%)	Fisher’s exact test p < .001
Cis-man, n (%)	136 (90%)	35 (70%)
Trans-woman, n (%)	0 (0%)	2 (4%)
Trans-man, n (%)	0 (0%)	1 (2%)
Gender nonconforming/Nonbinary, n (%)	7 (5%)	2 (4%)
Race and ethnicity**
American indian or Alaska native, n (%)	1 (0%)	1 (2%)	Fisher’s exact test p = .135
Asian or Asian American, n (%)	37 (25%)	11 (22%)
Black or African American, n (%)	22 (15%)	11 (22%)
Hispanic, Latino, Latina, or Latinx, n (%)	27 (18%)	11 (22%)
Middle eastern or northern African, n (%)	0 (0%)	2 (4%)
Native Hawaiian or other pacific islander, n (%)	0 (0%)	0 (0%)
White, n (%)	77 (51%)	20 (40%)
Other, unknown, or undisclosed, n (%)	3 (2%)	0 (0%)
Sexual orientation**
Bisexual, n (%)	17 (11%)	11 (22%)	Fisher’s exact test p = .082
Gay, n (%)	114 (75%)	28 (56%)
Lesbian, n (%)	1 (0%)	0 (0%)
Heterosexual, n (%)	16 (11%)	9 (18%)
Queer, n (%)	8 (5%)	2 (4%)
Other, unknown, or undisclosed, n (%)	2 (1%)	2 (4%)
Insurance status
Insured, n (%)	107 (71%)	38 (76%)	Fisher’s exact test p = .191
Underinsured, n (%)	9 (6%)	6 (12%)
Uninsured, n (%)	34 (23%)	6 (12%)
Other, unknown, or undisclosed, n (%)	1 (0%)	0 (0%)
Last HIV test date
Less than 3 months ago, n (%)	35 (23%)	11 (22%)	Fisher’s exact test p = .742
3–6 months ago, n (%)	66 (44%)	21 (42%)
7–12 months ago, n (%)	19 (13%)	5 (10%)
More than a year ago, n (%)	21 (14%)	11 (22%)
Never, first-time tester, n (%)	10 (7%)	2 (4.0%)
Reason for testing*
First-time HIV tester, n (%)	9 (6%)	4 (8%)	Fisher’s exact test p = .547
Routine testing, n (%)	127 (85%)	37 (74%)
Possible exposure / sexual encounter, n (%)	30 (20%)	13 (26%)
Other, unknown, or undisclosed, n (%)	2 (1%)	1 (2%)

In response to a question regarding prior knowledge of HIVST, 61% (n = 92) of the in-person group reported knowing about HIVST prior to taking the survey. Of those in the in-person group who had prior knowledge of HIVST, 38% (n = 35) had taken an HIVST before, furthermore, recency of HIV testing was significantly associated with knowledge of HIVST, with individuals who tested more recently having higher reported knowledge of HIVST (χ2 = 10.24, p = .0365. 48% (n = 24) of the at-home group had taken an HIVST before (Table 3). Most individuals in both the in-person (85%, n = 128) and at-home (86%, n = 43) groups reported that they would be willing to provide their HIVST test results to GMHC via a secure online form. Furthermore, 85% (n = 129) of the in-person group and 70% (n = 35) of the at-home group reported being open to receiving telephone follow-up for additional services after completing their HIVST (Table 3).

Table 3.

Prior knowledge, acceptability of reporting/follow up, and factors influencing testing setting preference.

	In Person (n = 151)	HIVST (n = 50)
Knew about HIVST prior to this survey n(%)	92 (61%)	-
Previously took an HIVST, n (%)	35 (23%), (n = 92)	24 (48%)
Open to sharing home test results with GMHC, n(%)	128 (85%)	43 (86%)
Open to receiving follow up at GMHC, n(%)	129 (85%)	35 (70%)
Would have tested in-person at any testing center, if they did not have access to this at home HIV test	-	35 (70%)
What led you to test in-person today rather than using an at-home HIV test? (Multiple select)
Testing for other STIs (gonorrhea, chlamydia, syphilis)	118 (78%)	-
Counseling session (HIV/STI information and sexual history)	12 (8%)	-
Access to referrals (PrEP/PEP, primary care, etc.)	20 (13%)	-
Comfort of having another individual (testing counselor) present during the test administration	33 (22%)	-
Difficulty of using at-home self-test kit	6 (4%)	-
Did not know about at-home HIV self-testing	34 (23%)	-
No preference	7 (5%)	-
Other, unknown, or undisclosed	13 (9%)	-
What led you to test at home rather than testing in person at GMHC? (Multiple select)
Unable to access in-person testing locations for any reason	-	14 (28%)
Uncomfortable talking about HIV testing with another person	-	6 (12%)
Previous negative experience with in-person testing	-	2 (4%)
Privacy	-	19 (38%)
Convenience/Scheduling	-	32 (64%)
Other, unknown, or undisclosed	-	0 (0%)

Individuals who tested in-person were asked why they tested in-person instead of utilizing HIVST. 78% (n = 118) reported choosing in-person testing because they needed to test for other STIs like gonorrhea, chlamydia, and syphilis while 22% (n = 33) reported wanting to have another individual (testing counselor) present during the test. Individuals who tested at home were asked why they did not test in person and 64% (n = 32) reported that the convenience and scheduling ease of HIVST influenced their decision. Additionally, 38% (n = 19) reported privacy concerns with in-person testing and 28% (n = 14) reported being unable to access an in-person testing location for any reason (Table 3). The at-home participants were further asked if they would have tested in person at any testing center if they did not have access to the HIVST we provided. 70% (n = 35) reported that they would have tested in person if they had not had access to HIVST, while 4% (n = 2) and 26% (n = 13) answered no or unsure, respectively (Table 3).

In-person participants found having a testing counselor present to answer questions and provide resources in real-time to be more important than at-home participants did (U = 4677.7, p = .007). Additionally, at-home participants found convenience to be more important in determining testing modality than in-person participants did (U = 2808.0, p = .006). For the remaining three factors—a counselor to provide emotional support, completing a pre-test interview, and considering the collection method of the sample—both groups reported general indifference.

When asked what testing method they would prefer when considering these factors, both groups remained indifferent regarding factors 3 and 4, the pre-test interview and collection method. When considering the first two factors, having a counselor for emotional support and for questions or referrals, the in-person testing group reported a slight preference for in-person testing (Likert scale medians of 2). The at-home testing group remained indifferent when considering these factors. While the convenience factor was of the most importance to both groups, in-person testers were indifferent to the testing method in this question. At-home testers, however, reported a strong preference for at-home testing when considering convenience (Likert scale median of 5).

Both groups were asked how much they trust each testing setting, with response choices offered on a five-point Likert scale. The median response for the results of an in-person HIV test for both groups was “strongly trust” 86% (n = 129) and 73% (n = 36) for in-person and at-home groups, respectively. However, the groups differed in their trust of HIVST; the in-person group had a median response of “slightly trust” 40% (n = 60) while the at-home group had median response of “strongly trust” 51% (n = 25) (U = 1858.5, p < .001, Figure 1). Participants were also asked about their preference between a more sensitive blood-based serology test(4^th generation HIV antibody/p24 antigen) and a more comfortable oral fluid test. 71% (n = 142) of respondents across both groups reported a strong preference for the blood-based test with the shorter window period.¹⁸ There were no appreciable differences between the in-person and HIVST groups for this question (Figure 1).

Figure 1.

Trust in testing setting and modality by cohort.

Finally, when asked which modality they would choose for their next HIV test, 51% (n = 25) of at-home respondents and 23.8% (n = 36) of in-person clients reported wanting to use HIVST for their next HIV test. Thus, individuals who were already utilizing the HIVST program were more likely to choose it in the future (OR:1.72, CI (1.26,2.36), p < .001).

Discussion

HIVST has been instrumental in helping more individuals know their HIV status in a convenient and private way. Despite this, barriers remain that need to be addressed to increase awareness and utilization of HIVST. First, there continues to be a significant proportion of individuals seeking HIV testing who are unaware that HIVST is an option. Based on our data, 39% (n = 59) of in-person testers did not know or were unsure that HIVST existed. Organizations providing HIV/AIDS services in the United States should continue to advertise their HIVST programs and educate in-person testers about HIVST. Increasing awareness of HIVST can help promote the widespread use of HIVST, especially when traditional HIV testing services are disrupted.

Respondents to our survey, from both the at-home and in-person groups, appear to value convenience. Though both groups rated it as at least somewhat important when selecting their testing method, this priority led in-person testers to report indifference about the testing method, but at-home testers to show a strong preference for at-home testing. The in-person group’s indifference could reflect their lack of knowledge around at-home testing or a desire to choose their testing method contextually. Different methods will be convenient for different groups or at different times. The at-home group clearly sees at-home tests as convenient and rated convenience above any other factor when deciding what type of HIV testing to use. These results demonstrate that providing various options for testing increases accessibility and can reach a more diverse population. This is consistent with other public health interventions such as contraception where more options increase uptake.¹⁹

Another key component of HIVST implementation is addressing trust. Individuals had different levels of trust in the test results they received from the in-person tests and at-home tests. In-person testers were less likely to trust an at-home test result compared to an in-person result, whereas at-home testers had equal amounts of trust in both test results. This disparity suggests that there are two different groups of potential testers with different comfort levels with HIVST. Thus, engaging in shared decision-making with the client becomes especially important. Additionally, providing education on the sensitivity and window period of HIVST may be an opportunity for organizations to improve trust in the at-home tests.

For organizations that offer HIVST, online reporting of HIVST can help better track HIV positivity rates in their communities and ensure that individuals can be connected to care. In our survey, most people reported feeling comfortable with securely submitting their HIVST test results online. Additionally, a majority of individuals reported that they would be open to receiving telephone follow-up, creating an opportunity to connect HIVST testers with additional services such as Pre-Exposure Prophylaxis (PrEP), STI testing, primary care, and mental health services. Given that in-person testers demonstrated a preference for in-person testing when considering the presence of a counselor for emotional support or for questions and referrals, this follow-up could be one way to equalize the resources available to both groups of testers.

Prior implementation of HIVST at GMHC did not achieve levels of response on par with the openness that respondents to the present survey signaled. In one initiative at the center, testing counselors reached out to HIVST recipients via phone call 2 weeks after their kit was mailed to follow up on the result of their test. Many participants did not respond to these calls, with less than half of the participants responding. A study conducted in Australia achieved similar levels of contact via telephone at 53.9%²⁰ More openness to follow-up in this survey could represent a change over time or could reflect a response bias wherein participants who chose to fill out the survey were generally more open to communication regarding their HIV testing. However a recent systematic review reports that active counseling support such as calling can result in high levels of linkage to care and should be used in conjunction with HIVST distribution.²¹

One critical barrier for widespread HIVST adoption is the lack of availability of at-home options for other STIs like gonorrhea, chlamydia, syphilis, and hepatitis c. As evidenced by the survey results, 78%(n = 118) of in-person testers cited the lack of at-home STI testing as a reason they tested in person. These tests have been recently approved by the FDA for at-home collection; however, the cost of these tests are high. Expanding funding to include these STI test collection kits would likely further increase uptake of HIVST as individuals would be able to routinely test themselves for all STIs at home without the need to present to a testing center. Additionally, our data suggests that patients prefer a more sensitive blood-based test compared to an oral fluid test. This opens the opportunity of expanding current point of care 4th generation HIV tests into HIVST offerings. This could help address some concerns associated with the marginally lower sensitivity rate of oral fluid tests.

Limitations

The primary limitation of this study is its external validity; GMHC’s testing center is in midtown Manhattan and the demographics of the survey respondents are skewed towards cis-gay males, which comprise the majority of GMHC’s client population. Many respondents were also not first-time HIV testers, meaning they were familiar with at least one type of testing. This may limit the generalizability of these results to other populations seeking HIV testing, such as first-time testers, women, heterosexual individuals, and trans individuals. The skewed demographics of the current study towards cis men may also skew the levels of trust and willingness to use HIVST. Other studies have demonstrated significant differences between men and women in their perceptions of HIVST acceptability and willingness to report results or buy HIVST kits themselves.²² Additionally, the limited number of respondents—and the much lower number in the at-home group--limited the ability to establish correlations with a binomial logistic regression on their decision-making factors. Attempts were made to lengthen the survey period; however, data collection ceased due to the slow increase in responses and the rollout of a grant survey. Future surveys of larger, and more diverse, populations of people testing for HIV would help improve informed decision-making around HIVST expansion in the United States.

Conclusions

HIV continues to be present public health challenges in communities across the world. Free HIVST is an opportunity to provide testing services to individuals who may be unable to, or prefer not to, test in person for reasons like confidentiality or scheduling. Overall, the results from this study show the increased need for education about HIVST services in NYC to improve awareness and trust around at-home testing. The data also reflect the potential for robust structuring of HIVST services, such as online reporting and telephone follow-ups, to provide counseling and connections to future care. Current HIVST users appear to be comfortable with and will likely continue to use at-home testing. Free HIVST programs should continue to expand across the US in order to provide HIVST users seem comfortable and likely to return to at-home testing, there is a potential for HIVST to play an important role in the future of HIV testing in the U.S.

Footnotes

Authors’ contributions

ARM, OS, and BF conceptualized the work. ARM and OS collected the data. ARM, PD, AM, and BZ performed statistics and constructed tables and figures. ARM, OS, PD, AM, RK, SW, BZ, ME, and BF wrote the initial draft of the manuscript. ARM, OS, PD, AM, RK, SW, BZ, ME, and BF contributed to the editing and revision of the manuscript. All authors read and approved the final manuscript.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Funding for the HIVST program was provided by the New York City Department of Health and Mental Hygiene.

Ethical Statement

ORCID iD

Abhishek R. Mogili

Data Availability Statement

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.*

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