Opt-out testing for HIV: perspectives from a high prevalence community in south-east England,UK

INTRODUCTION

The rate of new HIV infections in the UK continues to rise and the benefits of early diagnosis for individual patient health, public health and cost-effectiveness are well established.^1,2

In 2001, the ‘National Strategy for HIV and Sexual Health’ set targets to improve the proportion of patients attending genitourinary (GU) medicine clinics in England receiving tests for HIV. In response, opt-out HIV testing protocols, in which all patients are offered an HIV test, were introduced, resulting in an increase in the number of tests conducted,^3,4 and a significant increase in the number of HIV tests offered to patients at low risk of HIV infection. ⁵

To further increase diagnoses of HIV infection, the three leading clinical HIV organizations in the UK (the British HIV Association [BHIVA], the British Association of Sexual Health and HIV [BASHH] and the British Infection Society [BIS]) developed joint guidelines in 2008 for HIV testing at the time of general medical admission to hospital, and at primary care (general practice [GP]) registration in high-prevalence areas (>2 per 1000 of local population aged 15–59 years).^6,7 These guidelines were similar to other policy recommendations in high income countries, for example those from the Center for Disease Control and Prevention (CDC) in the USA.^8,9

In response to these guidelines, the UK Health Protection Agency (HPA) (which is responsible for protecting UK public health through the provision of support and advice to many organizations including the devolved administrations) funded eight clinical pilot studies of opt-out HIV testing strategies across England. ¹⁰ Five of the eight pilots evaluated patient acceptability of opt-out testing in clinical practice, three of these were in community settings (assertive outreach and clinics targeting African people; and clinics targeting men who have sex with men [MSM]); one in primary care; and one pilot that combined hospital departments and primary care (HIV in non-traditional settings [the HINTS Study]). Of these, the HINTS pilot was the largest (sample size 6349): 95% of patients found the offer of an opt-out HIV test appropriate, and 65% accepted the test. There were no significant differences in acceptability reported by gender, ethnicity, age or testing history, but, despite MSM being the most ‘at risk’ group for positive diagnosis, the report did not comment on any differences by sexuality. The primary care pilot, in 10 GP practices in Brighton (an area of high HIV prevalence with a large MSM population) (sample size 799) reported on acceptability and sexuality and found no significant association between acceptance of a test and sexuality. ¹⁰

Despite an explicit Department of Health expectation that future services for sexually transmitted infections (STIs) in England should respond to the needs of different patient groups, ¹¹ none of the pilots sought to explore the different meanings that HIV testing might have for individuals in high or low prevalence communities, where the risks of taking an HIV test may be perceived very differently. This qualitative study aimed to address this deficit by investigating the motivations and attitudes towards opt-out testing among different groups recruited from the community in a geographical area of high prevalence of HIV in the UK.

METHODS

Setting and procedure

Originally 10 focus groups were conducted in Brighton, UK, August to October 2009. In order to seek a range of opinions we targeted eight distinct groups using quota sampling based on age, sexuality and gender. We recruited a ninth group consisting of ‘overseas students’ to reflect the demographic diversity of the region. The 10th group consisted of HIV-positive individuals of any age or gender. We aimed to recruit between 6–8 informants to each homogeneous group. Participants were identified through local community and voluntary organizations, advertisements in the local press and word of mouth. Interested individuals emailed or telephoned the researcher who then assessed eligibility criteria and allocated the individual to the appropriate group. Recruitment into the study was on a first-come, first-served basis until each group was filled, to avoid recruiter bias. Individuals were then asked to attend a community venue at a given time (Brighton Women's Centre; Terrence Higgins Trust; Young People's Centre). Groups were moderated by the research fellow with a co-facilitator taking field notes, and were digitally recorded. Recordings were transcribed verbatim by an external medical transcribing service. All participants were offered £20 re-compense for participation. The potential introduction of opt-out HIV testing at registration with a GP surgery and at acute general medical admission at hospital was described to groups, and participants' perspectives were explored using a topic guide. The issue of opt-out testing for HIV was specifically included in the topic guide after it emerged as an issue of importance. As the topic was exploratory we kept the discussion open by asking about the pros and cons of testing, how people would feel being offered the test and whether they accept or decline a test if offered under the circumstances described. Unfortunately we could not rerun the groups already held to include questions relating to opt-out testing, therefore, out of the 10 focus groups originally conducted and quota sampled for gender, age and sexual identity, five groups had relevant data to be included in the analysis presented here and the limitations are discussed.

RESULTS

Thirty-one participants with an average age of 33 years (range 16–65 years, 15 women, 16 lesbian/gay/bisexual) participated (Table 1).

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Table 1

Focus group participants

Focus group	Participants	Age range in years (mean)
1 Heterosexual women	7	25–50 (32)
2 Heterosexual men	7	24–59 (37)
3 Overseas students	5	16–28 (23)
4 MSM (men who have sex with men) with HIV	6	37–65 (51)
5 Lesbian and bisexual women	6	19–25 (21)
Total	31	16–65 (33)

To summarize, participants spoke about HIV testing as part of a package of care with routine testing for STIs in general, asserted their right to opt-out, speculated on the motivations of non-testers and spoke of testing as a moral responsibility. There was some confusion within groups over the optional/compulsory status of current HIV testing policy and the rigour of informed consent procedures. MSM already diagnosed with HIV balanced the potential physical health benefits of HIV diagnosis against the negative social and psychological outcomes of a positive result.

DISCUSSION

In this exploratory study with 31 people recruited from the community, there was general acceptance and approval of opt-out HIV testing in two contexts: at registration with a GP surgery and on hospital admission. Each of the five focus groups acknowledged the health benefits of early diagnosis for the individual, and articulated a responsibility for all individuals to accept a test in recognition of the potential benefit for the heath of the public. There was widespread disapproval of non-testers.

The meaning and implications of HIV testing differed between groups. Participants from relatively low prevalence groups expressed a moral imperative for those from higher prevalence groups to test, along with a concurrent assertion of their own right to opt-out. This focus on defending their own right to opt-out while criticizing others who might decline tests, may suggest these groups assumed HIV was of limited relevance to them. All participants in our study had been recent users of STI testing services, yet they believed the value of HIV testing came primarily from testing ‘others’. The process of ‘othering’ in relation to HIV has been well explored ^16–18 since the early 1990s. The psychosocial process of dividing self from other has been seen to be very effectively applied to HIV. Gay men, injecting drug users and African people are popularly recognized as the groups with the highest prevalence of HIV; therefore, people who are heterosexual, non-African and not injecting drugs are able to distance themselves from HIV by positioning it with the morally questionable and/or marginal ‘others’. When the (suggestion of the) threat of HIV was raised in the focus groups, this intensified the need to draw a distinction between ‘them’ and ‘us’. The popularly validated process of ‘othering’ enabled the heterosexual and non-African groups to conceptually distance themselves from the risk of HIV and project it onto groups they had already conceptualized as ‘other’, at risk of HIV and in need of HIV testing. ¹⁹ This protective projection derives from, and contributes to, the distribution of blame and responsibility for HIV and, in doing so, also offers the mainstream groups reassuring support for the notion that HIV is distant, and that HIV testing is others’ responsibility.

Although we did not explicitly seek to investigate the ‘normalizing’ effect of routine opt-out HIV testing, this issue clearly emerged as a positive factor for most participants, who valued the levelling effect of combining HIV tests with other, less stigmatized tests. The value of normalizing HIV testing and care has previously been commented on,^20–22 balancing the ‘exceptionalism’ of HIV services with ‘normalization’. A recent study ²³ has illustrated national differences and rapid evolution of HIV policies across Europe, with the UK comparatively progressive in its normalization of HIV policies and HIV testing. However, the same study highlights barriers to the normalization of HIV testing, including the ‘…attitudes of health care providers or clients/patients’, and advocates further research to determine whether normalized attributes ‘…have impacted on the performance of HIV testing’. ²³ Findings from our small study suggest that the ‘normalizing’ effect of routine opt-out testing may have a positive effect on take-up of HIV tests – especially among people from low prevalence groups.

Men who have sex with men (MSM) remain the group most at risk of acquiring HIV in the UK and over 25% of MSM with HIV infection are estimated to be undiagnosed. ⁶ Previous studies have shown that the anticipated burden of living with the associated stigma and discrimination are key factors that discourage MSM from testing for HIV.^24–28 The failure to match developments in testing policy with interventions to reduce HIV-related stigma and discrimination has been highlighted by Imrie and McDonald (2009). They argue for the need to consider HIV testing from the perspective of MSM, to recognize what testing means to gay men, and to recognize that the degree to which a patient risks a positive test result influences the perspective of patients in high-prevalence groups and their decisions about whether to test or not. ²⁹ Most of the participants in this study approached opt-out testing as a discrete event, with an apparent low expectation of a positive diagnosis. But this perception of limited relevance contrasted with the views of the group of ‘MSM with HIV’, who contextualized testing as the potential starting point for a life with HIV and its associated ongoing stigma and discrimination. This group highlighted the consequences of testing positive for HIV, the need for comprehensive support and the burden of living with a stigmatized diagnosis, all of which were seen to substantially affect decisions about testing for HIV. While normalizing testing may encourage take-up of HIV tests for some people, concerns about the potential consequences of testing persist for people from higher prevalence groups who have a higher risk of testing positive.

Concerns, reservations and misinformation about the consent procedures also emerged as a key theme in the ‘MSM with HIV’ group. Two participants in this group stated that they had previously been tested for HIV without their consent. There was consensus in this group that a system of informed consent would break down. Interestingly, this concern was not sufficient to put aside their support for opt-out testing as a valuable method of achieving early diagnosis. Several groups (both MSM and heterosexual) expressed anxiety about being pressured to accept an opt-out HIV test, assuming both implicit pressure in the way an offer might be conducted (‘… I didn't go in for an HIV [test] but I sort of came out with one’), or the potential for policy to develop into compulsory testing. These findings suggest that patients will be more likely to tolerate the introduction of opt-out HIV testing if they are assured that their right to opt-out will be upheld.

It is interesting that while several groups remarked on the value of the proposed increase in opt-out testing to diagnose, none acknowledged any limitations of the proposals. Increased (opt-out) testing at hospital admission and registration with a GP surgery will diagnose some infections that would otherwise go undetected, ¹⁰ but it is not known how many MSM register with a new GP surgery and/or attend hospital for a general medical admission within a single year. Over half of MSM have unprotected anal intercourse in a year (31% MSM have at least one occasion and a further 23% have two or more), ³⁰ and only 39% of MSM have tested within the last year. ³⁰ Furthermore MSM with higher numbers of sexual partners are least likely to have been tested in the last year, and more likely to have never tested.^27,30 It has also been noted that while the likelihood of acquiring HIV infection increases with age, HIV testing among MSM actually decreases with age. ²⁷ With higher viral load and infectivity immediately after infection, frequent and repeated testing will still be necessary in order to reach many of the frequent risk-takers in high prevalence groups.^6,31 Diagnosing HIV infection is a key priority and the pilot studies have shown that opt-out testing is likely to reach some undiagnosed infections, ¹⁰ but this occasional one-off testing is unlikely to meet the challenge of the frequency of unprotected anal intercourse in high prevalence groups: a sustained focus on the value of repeated voluntary HIV testing will also be necessary.

There are two key limitations of this study. Participants in this study were all users of STI testing services within the last two years. This sampling method may have introduced bias through recruiting people who were motivated by their experiences to attend a focus group on STI testing services. Additionally, we do not know how many of the sample had previously been offered and had been given an HIV test, which may have affected their attitudes towards being tested. Secondly, because the area of opt-out testing emerged as an important theme and was introduced to the series of focus groups halfway through this study about testing for STIs in general, our data do not include the views of people from high prevalence groups that do not have HIV. The resulting selection bias may have affected the types of issues to emerge from the data especially in relation to stigma and normalization. The strength of this study is that it provides patient-centred data in a rapidly emerging area for which relatively little is known about people's views.

The individual and public health benefits of HIV diagnosis are clear, but for many MSM, and other high prevalence groups, the value of being diagnosed with a stigmatized infection is complex.^1,2 Initiatives in testing policy have not been matched by interventions to tackle the vulnerability, stigma and discrimination anticipated by many people considering a test.^24–27,29 While large numbers of patients from low prevalence groups may comfortably accept an HIV test when offered, for patients in high prevalence groups, the fear of a positive result and its consequences remain largely unaddressed barriers to testing. Further research into this area will help address these concerns when developing policy, and will also raise awareness of the need to highlight the benefits of HIV testing to patients. Further work should include the views of people from groups such as HIV negative MSM and to include previous HIV testers and non-testers, to ensure their views are represented. Using a revised topic guide to further understand in more detail areas such as implementation, the meanings of consent and confidentiality regarding HIV testing, decision-making processes and the role of normalizing and stigma would aid our understanding of these complex issues. The policy target of increasing the identification of undiagnosed HIV in the UK is more likely to be reached if patient perspectives are considered.