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Identifying undiagnosed HIV in men who have sex with men (MSM) by offering HIV home sampling via online gay social media: a service evaluation
  1. E Elliot,
  2. M Rossi,
  3. S McCormack,
  4. A McOwan
  1. HIV/GUM directorate, Chelsea and Westminster Hospital, London, UK
  1. Correspondence to Dr Emilie Elliot, 56 Dean Street, HIV/GUM Directorate, Chelsea and Westminster Hospital, 369 Fulham Road, London SW10 9JY, UK; emilieelliot{at}doctors.net.uk

Abstract

Background An estimated one in eight men who have sex with men (MSM) in London lives with HIV, of which 16% are undiagnosed. It is a public health priority to minimise time spent undiagnosed and reduce morbidity, mortality and onward HIV transmission. ‘Dean Street at Home’ provided an online HIV risk self-assessment and postal home HIV sampling service aimed at hard-to-reach, high-risk MSM.

Objectives This 2-year service evaluation aims to determine the HIV risk behaviour of users, the uptake of offer of home sampling and the acceptability of the service.

Methods Users were invited to assess their HIV risk anonymously through messages or promotional banners on several gay social networking websites. Regardless of risk, they were offered a free postal HIV oral fluid or blood self-sampling kit. Reactive results were confirmed in clinic. A user survey was sent to first year respondents.

Results 17 361 respondents completed the risk self-assessment. Of these, half had an ‘identifiable risk’ for HIV and a third was previously untested. 5696 test kits were returned. 121 individuals had a reactive sample; 82 (1.4% of returned samples) confirmed as new HIV diagnoses linked to care; 14 (0.25%) already knew their diagnosis; and 14 (0.25%) were false reactives. The median age at diagnosis was 38; median CD4 505 cells/µL and 20% were recent infections. 61/82 (78%) were confirmed on treatment at the time of writing. The post-test email survey revealed a high service acceptability rate.

Conclusions The service was the first of its kind in the UK. This evaluation provides evidence to inform the potential roll-out of further online strategies to enhance community HIV testing.

  • HIV TESTING
  • SERVICE DELIVERY
  • DIAGNOSIS
  • PUBLIC HEALTH
  • GAY MEN
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Introduction

Of the estimated 43 500 HIV infected men who have sex with men (MSM) in the UK in 2013, 16% were considered to be undiagnosed,1 accounting for the majority of infectious individuals.2

Public Health England (PHE) reported that 31% of newly diagnosed MSM in 2013 were diagnosed late.1 Late diagnosis reduces life expectancy1 and facilitates transmission.3 Early diagnosis is consequently a central goal of epidemic control and is crucial to improved outcomes.

BHIVA (British HIV Association) guidance recommends population screening in high-prevalence areas/groups expanding outside traditional antenatal and genitourinary medicine (GUM) settings.4 While general practice-mediated and indicator-condition-driven testing has increased, gains have been limited and novel initiatives to increase testing continue to be needed, for both individual and public health. The national repertoire of community testing programmes is broad, yet lack of convenience, time or anonymity, perceived stigma from healthcare professionals, needle phobia and unwanted counselling remain barriers to testing, particularly for many MSM.5 These barriers can be addressed by home sampling.

Numerous MSM use social media to meet sexual partners; this can potentially facilitate risk behaviour (substance use, multiple partners, condomless anal intercourse (CAI)).6 Despite awareness of this social change, and evidence that online educational interventions can be successful in HIV prevention,7 ,8 there has been little use of social media to offer HIV testing up until recently and none in the UK prior to 2011.

‘Dean Street at Home’ (DS@H) launched in November 2011 offering MSM free home HIV sampling via the same social media that they may use to find sexual partners.

The aim of the service is to increase HIV testing in high-risk, hard-to-reach MSM by:

  1. eliminating barriers to testing

  2. increasing testing options for MSM

  3. offering online HIV information.

This 2-year service evaluation describes the self-reported HIV risk behaviours and testing history of users, uptake of home sampling, positivity rate and acceptability of the service.

Methods

Service

MSM were invited, through a personal message or promotional banner (see online supplementary appendix 3) to order a free postal HIV home sampling kit, via intermittent campaigns on MSM partner finding social media websites: Gaydar at first, then other online platforms (including Grindr, Recon and the Facebook pages of gay magazines and of sex-on-premises venues). The project initially focused on London but expanded nationally in May 2013.

Respondents first completed a one-off brief risk assessment, which mirrored a standard clinic pretest questioning, on condom use, timing of last unprotected intercourse and last HIV test and number and HIV status of partners; it simply required yes/no answers. Interactive feedback was provided on HIV transmission risks, risk reduction and recommendations for postexposure prophylaxis. ‘Identifiable risk’ of HIV was defined as CAI with an HIV positive partner or a partner of unknown status since the last negative HIV test and its window period. Regardless of risk, a postal HIV oral fluid self-sampling kit (Orasure) was then offered. From August 2013, the choice of a blood sampling kit (Microtainer) was added. Users had to answer a simple question demonstrating they understood the positive predictive value (0.95) of their chosen test before proceeding (‘If my postal test reacts, the chance of me having HIV is’ followed by three choices).

A pack containing the sampling kit, instructions and a prepaid envelope for return was dispatched within 24 h of order by next-day delivery. Samples were analysed using previously validated Abbott Architect platforms. Negative results were sent by text message within 24 h of sample reception, and experienced sexual health advisors delivered reactive results by phone arranging confirmatory testing and follow-up care. The project was approved by the local trust.

Evaluation

Data were collected prospectively over 24 months.

Anonymised data from the websites were extracted and analysed using Google Analytics to determine click through rates, respondent's self-reported risk/previous testing behaviour and testing uptake. For confidentiality reasons, the risk assessment was separated from the test-ordering site run by a commercial company, meaning it was not possible to link a sample to specific answers in the assessment.

An anonymised acceptability user survey (SurveyMonkey) was emailed once to all users who returned a sample in the first year, in order to assess the acceptability of the service (see online supplementary data, appendix 2).

Sample results were entered into Excel, and the outcomes of all reactive tests were examined through a retrospective notes review. Characteristics at diagnosis were compared with new HIV cases diagnosed and managed at our Central London centre over 1 year (November 2012–2013), using unpaired t tests for age, mean CD4 and viral load (VR) and two-tailed Fisher's exact tests for % sample return rates, recent infection testing algorithms results (RITAs), % diagnosed late and % on treatment.

As a National Health Service programme service evaluation, ethical approval was not required in accordance with NHS Health Resource Authority guidance (http://www.hra-decisiontools.org.uk/ethics/).

Results

Participants risk and testing status, service uptake and positivity rate

The evaluation period ran for 2 years from 1 January 2012. Online supplementary appendix 1 illustrates website activity, which directly correlated with individual websites’ promotional campaigns.

Figure 1 details the response rates and results. Thirty-six per cent of those who completed the assessment had never previously tested for HIV (6326/17 361) and 45% were at ‘identifiable risk’ for HIV infection (N=7872/17 361). A total of 11 127 clicked through for more information on the test, 30% of which were previously untested (3276/11 127) and 41% (4574/11 127) at ‘identifiable-risk’ (meaning 58% of all respondents at ‘identifiable risk’ sought information on home sampling (N=4574/7872)). Almost all of those who sought information then requested a sampling kit (N=10 323; 93%), of which 55% returned their sample within the evaluation period (N=5696).

Figure 1

Summary of visits to service website and new diagnoses in the first 2 years.

A total of 122 samples were reactive (121 individuals): 82 (1.4% of all returned samples) were confirmed HIV positive. There were 14 false reactive and 14 already diagnosed HIV. There remain 11 unconfirmed individuals. All have been notified of their result by phone and by post but have not been contactable since. A PHE search confirmed that they are not recorded into the UK central database under the identity used when testing (soundex/date of birth). The database does not, however, include patients tested through their GPs. The confirmed linkage into care of our project is therefore 88% (82/93 potential new positives).

Sample return rates decreased in the 5 months after the introduction of a choice between blood and saliva HIV sampling (61% vs 49.5%, p=0.0001). A return-rate evaluation in a later period of the project revealed that when given an informed choice, more people chose blood over saliva sampling. However, saliva samples were more likely to be returned.9 The median time between sample kit dispatch and returned samples reception was 8 days and the median time to text a negative result after reception of a sample was 24 h.

Characteristics of new HIV positive diagnoses

Of the 82 confirmed diagnoses, 51 are followed up in our Central London clinic and 31 elsewhere, 4 of which did not have any accessible data. Table 1 summarises the characteristics of patients diagnosed through DS@H compared with patients diagnosed and linked into care in our London clinic over a year (N=243). DS@H diagnoses were older and more likely to be on treatment at the time of writing. There was a trend towards fewer recent infections (RITA negativity), but this did not reach significance. The two groups had similar proportions of late diagnoses (CD4<350) and median viral loads.

Table 1

Parameters characterising users who tested positive for HIV

Discussion

In 2012 and 2013, there were 6480 new HIV diagnoses in the UK MSM (2070 in London);1 82 of these were made through DS@H. To our knowledge, this is the first large-scale HIV home sampling service reported in the UK to specifically target MSM and identify new cases.10 ,11

Maximising HIV-testing opportunities and reducing barriers to testing (convenience, time or anonymity, stigma, needle phobia or unwanted counselling) are central components of HIV prevention.5 We have developed a novel intervention that addresses both these priorities using online social networks. While there remains an ongoing debate around home sampling's lack of immediate linkage into care or opportunity to test for other sexually transmitted infections, it is important to note that, through eliminating key barriers to testing, we have the potential to reach MSM who may not otherwise test for HIV, while still offering online education and engagement with services, which home testing may not provide. Online test ordering and home sampling has been shown to be an acceptable and welcomed method for HIV testing in our acceptability survey (see online supplementary appendix 2) and in recent literature.11 Home testing was legalised in the UK in 2014 and requires further research on acceptability and effectiveness.10

New diagnoses through our project were made at an older age than the UK median (33 years)1 and our local clinic. This may reflect the ability of home sampling to reach older patients who have been at risk of HIV and would not otherwise test. There was a trend towards fewer recent infections among older men in the DS@H service sample, which may be a cohort effect. Additionally, new diagnoses were more likely to be on treatment at the time of writing (78%), potentially limiting onward transmission and perhaps reflecting the older age of this group.

While the confirmed linkage into care rate of our home sampling service is lower than the UK rate for diagnoses made in clinical settings (95%),1 it is comparable with levels achieved in outreach settings (75%–100%).12 It is also important to note that it is a possible underestimation as unlinked individuals tested through our project may have engaged with services under a different identity.

A screening prevalence of >0.2% is thought to be cost effective.13 The DS@H screening prevalence exceeded this level (1.4%). Additionally, with 23% of new diagnoses made at a CD4<350, DS@H compared well with the 32.5% national average in 2012/13 and potentially diagnosed people before disease progression to costly advanced HIV infection. The high median VL at diagnosis also feasibly reflects reduced costs of onward transmission.

An important limitation of this service evaluation was the inability to link the risk assessment to specific users. This means that we cannot comment on the risks of people not returning a sample. However, of those who clicked through to obtain information on testing, 30% had never tested and 41% reported CAI since their last test. The majority of those who clicked through for information then ordered a test.

There were 14 false reactive tests, which was higher than expected. This warrants further evaluation.9

DS@H is a novel initiative to increase HIV testing and prevention. By targeting MSM online where they meet sexual partners, potentially high-risk individuals receive education and are encouraged to test in a highly acceptable and anonymous manner. Home HIV sampling of MSM using social media identifies new cases of HIV and successfully engages them into care. This service evaluation provides evidence to inform the potential roll out of further online strategies to enhance community HIV testing in the UK.

Acknowledgments

With thanks to the staff of DrThom online who processed the samples, the staff at 90TEN who managed the online data, the collaborating online MSM social networking websites and Public Health England.

References

View Abstract

Supplementary materials

Footnotes

  • Part of this data was presented at the 4th BASHH ASTDA Spring meeting, Brighton, UK, 2012.

  • Handling editor Jackie A Cassell

  • Contributors AMcO and MR set up and ran the project; SMc commented on the risk assessment and survey. EE collected and analysed the data. EE wrote the manuscript. All the authors reviewed, edited and approved the manuscript.

  • Funding Development of the Dean Street at Home service was supported by a joint working partnership agreement with Bristol Myers Squibb Pharmaceuticals Limited, the Chelsea and Westminster Health Charity and an unrestricted education grant from VIIV Healthcare.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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