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HIV Testing Experience in New York City

Offer of and Willingness to Test in the Context of New Legal Support of Routine Testing

Edelstein, Zoe R. PhD, MS*; Myers, Julie E. MD, MPH*,†; Cutler, Blayne H. MD, PhD*; Blum, Micheline MA; Muzzio, Douglas PhD; Tsoi, Benjamin W. MD, MPH*

JAIDS Journal of Acquired Immune Deficiency Syndromes: January 1, 2015 - Volume 68 - Issue - p S45–S53
doi: 10.1097/QAI.0000000000000390
Supplement Article
Free

Background: In the United States, routine HIV testing is recommended for persons aged 13–64 years. In 2010, New York State passed a law mandating offer of testing in most health-care settings. We report on the consumer perspective in New York City (NYC) shortly after the law's enactment.

Methods: We analyzed data from a 2011 telephone survey representative of NYC adults aged 18–64 years (n = 1,846). This analysis focused on respondents' report of HIV test offer at last clinical visit and of willingness to test if recommended by their doctor. Offer and willingness were estimated by age, gender, race/ethnicity, education, income, marital status, sexual identity, partner number, and HIV testing history; associations were examined using multivariable regression.

Results: Among NYC adults, 35.7% reported an HIV test in the past year and 31.8% had never tested. Among 86.7% with a clinical visit in the past year, 31.4% reported being offered a test at last visit. Offer was associated with younger age, race/ethnicity other than white, non-Hispanic, lower income, and previous testing. Only 6.7% of never-testers were offered a test at last clinical visit. Willingness to test if recommended was high overall (90.2%) and across factors examined.

Conclusions: After a new law was enacted in support of routine HIV testing, approximately 1 in 3 New Yorkers aged 18–64 years were offered a test at last clinical visit; 9 in 10 were willing to test if recommended by their doctor. This suggests that patient attitudes will not be a barrier to complete implementation of the law.

*Bureau of HIV/AIDS Prevention and Control, New York City Department of Health and Mental Hygiene, New York, NY;

Division of Infectious Disease, Department of Medicine, Columbia University Medical Center, New York, NY; and

School of Public Affairs, Baruch College/The City University of New York, New York, NY.

Correspondence to: Zoe R. Edelstein, PhD, MS, Bureau of HIV/AIDS Prevention and Control, New York City Department of Health and Mental Hygiene, 42-09 28th Street, Queens, NY 11101 (e-mail: zedelst1@health.nyc.gov).

Supported in part by the New York City Department of Health and Mental Hygiene and by a cooperative agreement from the Centers for Disease Control and Prevention for HIV prevention (12-1201).

The authors have no conflicts of interest to disclose.

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INTRODUCTION

Of the 1.1 million US adults and adolescents living with HIV, approximately 16% are unaware of their infection.1 Increasing awareness of status among people living with HIV is an important public health goal and a top target of the US National HIV/AIDS Strategy.2 Diagnosed individuals can be linked promptly to HIV care and treatment. Timely and sustained treatment can reduce morbidity and mortality3–5 and decrease the likelihood of secondary transmission.6 Approximately half (49%) of US HIV transmissions are from individuals unaware of their status.7 Once aware, most HIV-positive individuals voluntarily reduce behaviors that could lead to sexual transmission, at least transiently.8 Thus, HIV testing allows all persons to optimize their own health and to protect partners.

To increase awareness of HIV status, the US Centers for Disease Control and Prevention (CDC) began recommending routine HIV testing in most health-care settings in 2006.9 CDC recommends that all persons aged 13–64 years be screened for HIV, that an “opt-out” model be used where patients are notified that testing will be performed unless they decline, and that a separate written consent and prevention counseling for HIV testing not be required. In 2013, the US Preventive Services Task Force added its support to routine testing by giving their highest recommendation (grade A) to HIV screening of all persons aged 15–65 years.10

When CDC's revised recommendations were first released, half of US states had legal barriers to implementation, including New York State11 (NYS). In NYS, the law required a separate written consent before HIV testing.12 Then, in 2010, significant changes to NYS law were enacted.13 Options available for patients to consent to HIV testing were expanded, and importantly, offer of an HIV test was mandated for all persons aged 13–64 years receiving hospital or primary care services, with limited exceptions.

Legal barriers aside, successful implementation of routine testing in New York and elsewhere depends, at its core, on clinicians offering HIV tests and patients accepting the offer. In 2012, a national survey estimated that only 26% of Americans had ever had a clinician suggest an HIV test.14 The same survey indicated that clinician recommendation was a primary motivation for HIV testing, a finding supported by other studies.15–17 Patient acceptance of HIV testing has been examined in a variety of health-care settings, including emergency departments,18–23 labor and delivery,24 ambulatory outpatient settings,25–28 and inpatient settings.29,30 Levels of acceptance ranged greatly (23%–89%). Clearly, in real-world clinical settings, acceptance of an HIV test by a patient occurs only in the context of being offered a test. In turn, clinicians' offer might be influenced by perceptions of whether patients will accept the test, with an acknowledged underlying concern that patients might be offended by the offer.31,32

Starting in 2005, the New York City (NYC) Department of Health and Mental Hygiene (DOHMH) expanded its funding of HIV testing in health-care facilities. NYC DOHMH began launching borough-wide expanded testing initiatives in 2008 (eg, “The Bronx Knows”33,34) with wide-reaching community support. Additionally, social marketing has been used to normalize the testing experience and to encourage NYC residents to accept the offer of testing and/or to ask for the test if not offered.35,36 Despite legal complexities, testing rates in NYC have been relatively high and public health support for testing has been strong. In 2011, an estimated 61% of NYC adults had ever tested and 32% had tested in the last year,37 whereas nationally, estimates in 2011 were 42.9% and 13.5%, respectively.38

In the context of both the recent changes to NYS law and the ongoing public health efforts to promote HIV testing across NYC, we used a population-based survey of New Yorkers to estimate prevalence of clinician offer of the HIV test at last clinical visit and willingness to test if a doctor recommended that everyone get tested for HIV. We also examined the demographic, behavioral, and clinical factors associated with each outcome of interest.

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METHODS

Survey Design

The NYC DOHMH and Baruch College Survey Research conducted a telephone survey from June 23, 2011, to August 12, 2011, to measure awareness of and attitudes toward HIV and HIV testing, DOHMH HIV testing initiatives, and related behaviors among noninstitutionalized adult (≥18 yrs) residents of NYC. The research protocol was approved by the institutional review boards at both institutions.

Respondents were selected randomly (total n = 2,473) through household landline (n = 1930) and cell (n = 543) phone numbers. The landline sample was based on a random digit dial design drawing on all existing landline telephone exchanges in the 5 boroughs of NYC. All phone numbers, listed and unlisted, were given a proportionate chance of being included. Respondents in the landline sample were selected randomly within the household from among adults (≥18 yrs). The cell phone sample was selected from a database of numbers that included those dedicated to wireless service only and numbers with shared services but no directory-listed landline in NYC. Residents of the Bronx and Brooklyn were oversampled to assess focused DOHMH initiatives in each of these boroughs (not analyzed here).

The overall response rate was 23% using the American Association for Public Opinion Research response rate methodology (response rate 3).39 This response rate is a summary measure of a cooperation rate of 55% (cooperation rate 3), a refusal rate of 18% (refusal rate 2), a rate of contact within the household of 55% (contact rate 2), and predicted eligibility among those whose eligibility was unknown.

The survey was conducted using a computer-assisted telephone interviewing system in English and Spanish. It was designed to collect self-reported data. Where applicable, questions were modeled from NYC DOHMH's annual Community Health Survey and The Henry J. Kaiser Family Foundation's survey of Americans on HIV/AIDS.

Data were weighted to the NYC adult population on age, sex, race, Hispanic origin, and borough using the US Census 2009 American Community Survey and to account for oversampling.

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Analytic Measures and Population

To investigate the consumer experience of HIV testing in NYC, we focused on key outcomes of HIV testing in the past 12 months (for context), offer of an HIV test at the last clinical visit, and willingness to accept an HIV test if recommended. Offer of HIV test at last clinical visit was estimated only among respondents who reported having a clinical visit in the past 12 months. The exact wording of the question was “Have you seen a doctor, nurse or other health professional in the last 12 months?” and, then, “The last time you saw a doctor, nurse or other health professional, did they offer you an HIV test?” Willingness to test was asked of all respondents as, “If your doctor recommended that everyone get tested for HIV, would you get an HIV test?”

Analyses were conducted among adults aged 18–64 years (ie, those in the survey sample who would be affected by the change in NYS law) (n = 1,846). Subpopulations were defined by demographic factors (age, gender, race/ethnicity, education level, income level, marital status, and sexual identity), behavioral factors (number of sexual partners in the past 12 months and sexual partnering in the past 12 months among sexually active respondents), and clinical factors (clinical visit in the past 12 mo and HIV testing history). Sexually active was defined as having had sex in the past 12 months. Sexual partnering was based on the respondents' self-reported gender and the gender of any sexual partners in the past 12 months. It was categorized as men who had sex with women only (MSW), women who had sex with women only (WSW), women who had sex with men (WSM, includes women who also have sex with women), and men who had sex with men (MSM, includes men who also have sex with women).

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Data Analysis

Weighted survey data were used to calculate prevalence offer of HIV test at last clinical visit and willingness to test if recommended estimates for HIV testing in the past 12 months among NYC adults.

For all prevalence estimates and subsequent analyses, respondents were excluded by the characteristic examined if they had a missing value and/or nonresponse to relevant survey questions. For testing in the past 12 months, offer, and willingness, 2.1%, 1.2%, and 2.1% of the relevant sample were excluded for each analysis, respectively, because of nonresponse.

Prevalence estimates were reported by demographic, behavioral, and clinical factors. Prevalence estimates with relative standard errors greater than 30% or that were based on a sample size of less than 50 were marked in Tables 1–3 to be interpreted with caution.

Poisson regression was used to examine associations with offer of test at last clinical visit and willingness to test if recommended. Prevalence ratios and 95% confidence intervals were estimated for demographic, behavioral, and clinical factors. Survey weights were accounted for in all regression models. We estimated age-adjusted prevalence ratios and then constructed multivariable models, including variables with statistically significant results in the age-adjusted models with some exceptions. Given possible temporality issues (described below) between offer of test at last clinical visit and HIV testing history, the latter was included only in the model for which the prevalence ratio was reported and it was adjusted for all other variables. A similar process was performed for willingness to test if recommended and both HIV testing history and offer at last clinical visit because of their role as potential mediators for the associations between willingness and other variables and for characteristics limited to a part of the study sample (eg, sexual partnering only among sexually active).

Lastly, we explored stratifications of prevalence of testing in the past 12 months, offer at last clinical visit, and willingness to test if recommended. These analyses were limited because the periods for each were not concurrent. The recall period for HIV testing was any time in the past 12 months, offer was at last clinical visit in the past 12 months, and willingness to test if recommended was hypothetical.

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RESULTS

Sample Characteristics

Distributions of demographic, behavioral, and clinical factors of NYC adults aged 18–64 years are shown in Table 1. Age, sex, race, and Hispanic origin were predetermined by survey weights. Among nonweighted demographic factors described, education level and household income varied. The most common marital status was currently married (40.2%), followed by never married (36.2%). A minority reported a sexual identity other than heterosexual (5.1%). The majority reported one sexual partner in the past 12 months (61.0%), and among the sexually active, most were MSW or WSM. Clinical visit in the past 12 months was common (86.7%). Most had a history of HIV testing, though 31.4% of NYC adults aged 18–64 years had never been tested. Distributions were similar when restricted to those who reported having a clinical visit in the past 12 months (data not shown).

TABLE 1

TABLE 1

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HIV Testing Context

Prevalence of HIV testing in the past year among NYC adults aged 18–64 years was 35.7% (Table 1). By demographic characteristics, testing was most common in younger age groups, females, race/ethnicities other than white, non-Hispanic, among lower education levels and lower household incomes, among those who had never married or had a partner with whom they lived, and those who had a sexual identity other than heterosexual. Testing in the past 12 months was more common among MSM, and it increased with increasing number of partners in the past 12 months. Lastly, testing in the past 12 months was more common among those who reported a clinical visit in the past 12 months (39.5%) than among those who did not (11.4%).

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Offer of HIV Test at Last Clinical Visit

Among NYC adults aged 18–64 years who reported a clinical visit in the past 12 months, 31.8% reported being offered an HIV test by a clinician at the last visit. Prevalence of HIV test offer at last clinical visit varied by demographic, behavioral, and clinical factors (Table 2).

TABLE 2-a

TABLE 2-a

TABLE 2-b

TABLE 2-b

Having been offered an HIV test at last clinical visit was significantly associated with younger age (Table 2). In the age-adjusted models, offer at last clinical visit was associated with race/ethnicity other than white, non-Hispanic, lower level of education, and lower income. Among the sexually active, when compared with MSW, WSM were statistically significantly more likely to be offered a test at last clinical visit and there was some indication (though not statistically significant) that MSM were also more likely (and WSW less likely) to be offered. Willingness to test if recommended and having tested for HIV were also both statistically significantly associated with offer of an HIV test at last clinical visit. Similar associations were seen in the multivariable models, though the strength of association for both education level and willingness to test if recommended was reduced and lacked statistical significance.

Gender, marital status, sexual identity, and number of sexual partners in the past 12 months were not significantly associated with offer of test at last clinical visit in either the age-adjusted or multivariable model.

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Willingness to Test if Recommended

Most NYC adults aged 18–64 years reported being willing to test for HIV if their doctor recommended that everyone get tested for HIV (90.2%, Table 3). Willingness was high across all subpopulations ranging from 78.7% to 98.2%.

TABLE 3-a

TABLE 3-a

TABLE 3-b

TABLE 3-b

Willingness to test if recommended was significantly associated with younger age (Table 3). In the age-adjusted models, willingness was statistically significantly associated with race/ethnicity (black, non-Hispanic, and Hispanic compared with white, non-Hispanic), lower income (<$20,000 compared with ≥$80,000 only), having never been married compared with currently married, sexual identity other than heterosexual, number of sexual partners in the past 12 months (2–4 partners versus none), a history of HIV testing, and offer of test at last clinical visit. Most associations were similar in the multivariable models with notable exceptions of income (no longer significantly associated) and number of partners in the last 12 months (1 partner versus 0 was significantly associated with willingness in multivariable model and not in age-adjusted model).

Gender, level of education, sexual partnering, and having had a clinical visit in the past 12 months were not associated with willingness to test if recommended in either the age-adjusted or multivariable model.

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HIV Testing in the Past 12 Months by Offer and Willingness Measures

Most NYC adults aged 18–64 years who reported being offered an HIV test at last clinical visit in the past 12 months also reported having been tested in the past 12 months (77.4%, data not shown), though the effect of the difference in recall period was not measurable. Among those who would be willing to test if recommended by their doctor, 39.3% had an HIV test in the past year. This was only slightly higher than the prevalence of HIV testing in the last year (35.7%, Table 1).

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DISCUSSION

The successful implementation of routine HIV testing in health-care settings is contingent on providers offering HIV tests and patients accepting these offers. In this study, most NYC adults aged 18–64 years (90.2%) reported being willing to test for HIV if their doctor recommended that everyone get tested for HIV; a far smaller proportion of those who had seen a clinician in the past year were offered a test at their last clinical visit (31.8%).

These results suggest that routine offer of HIV testing was likely not widespread in NYC at the time of the survey. Report of offer was more common among subpopulations, such as people of color and MSM. This likely reflects an HIV testing strategy that targets higher risk groups (a practice no longer recommended by the CDC40). However, it is important to note that this survey did not specifically address other aspects of the clinical visit, including whether a conversation occurred regarding prior HIV testing or HIV risk behaviors, whether the respondent asked for an HIV test without being offered one, whether a medical record was checked for HIV testing history, and whether the provider was a specialist and thus not covered by the NYS law.

Our study focuses on the NYC testing experience, though other work suggests that routine offer of HIV testing has not been completely adopted across the country either. The Kaiser Family Foundation estimated that 26% of Americans had ever had a clinician suggest an HIV test in both 2011 and 2012.14 Provider surveys indicate that a fair number are not offering testing routinely and that some clinics have not formally implemented routine testing policies within their practice.41−45

In this context, we found that New Yorkers' willingness to test for HIV if recommended by a clinician was high across demographic, behavioral, and clinical factors. Some of the highest levels of willingness were among subpopulations at potentially higher risk for HIV behaviorally (eg, 98.0% in those with 2–4 partners in the last 12 mo) or demographically46 (eg, 95.8% in black, non-Hispanics). This aligns with earlier studies suggesting that those who perceive themselves to be at risk for HIV or who report HIV risk factors are more willing to test.47–49

Although we cannot be sure how hypothetical willingness would translate into acceptance of an HIV test in a health-care setting, theory and research suggest that intent is typically a predictor of subsequent health behaviors.50,51 Importantly, the rate at which intent leads to the intended behavior (eg, intending to test for HIV and then subsequently testing52) is typically mediated by barriers and facilitators. Willingness, as measured in our study, may reflect attitudes toward routine HIV testing and/or motivation to comply with a doctor's recommendation, which both affect intent. The overwhelming willingness in the hypothetical situation posed suggests that patient attitudes and compliance may not be the primary barriers to routine HIV testing. A doctor's recommendation may be a strong facilitator.

Keeping limitations of our measures in mind, the combined results of offer, willingness, and history of actual HIV testing point to missed opportunities. Among those who were willing to test if recommended, 33.9% were offered an HIV test at their last clinical visit and 39.3% had tested for HIV in the last year. Furthermore, willingness was high among the 31.4% of NYC adults aged 18–64 years who had never tested for HIV (78.7%) and also high among those who were not offered a test at last clinical visit (88.2%). Only 6.7% of never-testers were offered an HIV test at their last clinical visit.

This analysis has several limitations. It is cross-sectional, and therefore, temporality between covariates cannot be established nor can change over time be described. Also, data collection was less than 1 year from the effective date of the 2010 NYS testing law. Thus, the recall period (past 12 mo) for health-care visits included a period that preceded the implementation date of the law on September 1, 2010. Response rates were low, though comparable with other phone surveys. We cannot be sure how nonrespondents would have answered questions regarding HIV test offer and willingness, though the prevalence of actual HIV testing in the past 12 months (35.7%) was similar to a larger population-based 2011 survey in NYC (32.2% in 18- to 64-yr olds37). As in any survey relying on self-report, social desirability bias and recall error could affect our results. Social desirability bias may have led to an overestimate of true value of willingness to test if recommended. Recall error may have affected the measure of offer, despite our attempt to address this by asking only about the last clinical visit among those with a visit in the last 12 months. Lastly, these findings may not be generalizable to New Yorkers aged 13–17 years, who are also included in the recommended age range for testing under NYS law but who were not surveyed.

Public health and legal support for routine testing are important steps in the effort to identify HIV-positive individuals who are unaware of their status. Efforts to educate clinicians should describe the rationale behind routine testing and missed opportunities for case finding when using a risk-based approach. Educational efforts might also emphasize patients' willingness to test if recommended and existing guidelines and/or legislation that supply a nonjudgmental reason for recommending an HIV test. Meanwhile, enhanced focus should be placed on structural barriers in the health-care setting identified elsewhere, such as time constraints, funding concerns, insufficient training,53 and clinic policies that do not support routine testing.54 Additionally, efforts to hold facilities and/or clinicians accountable should be considered. This could include using HIV testing as a health-care quality indicator, requiring institutional policies and protocols for HIV screening as part of accreditation, or penalizing agencies that do not test routinely.

In the last decade, public health efforts to increase HIV testing in NYC have included increased funding for testing in health-care settings, expanded testing initiatives and social marketing to normalize testing, and legislative and policy changes. These efforts have likely played a role in the increasing rates of testing among NYC adults.34,37 Our study suggests that in the period immediately after a new HIV testing law was enacted in support of routine testing, approximately 1 in 3 New Yorkers aged 18–64 years were offered an HIV test at last clinical visit and that fully 9 in 10 were willing to test if recommended by their personal doctor. Trends should be followed as the law reaches more complete implementation to understand the law's full impact on testing in NYC.

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Keywords:

HIV testing; routine testing

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