Article Text
Abstract
Objectives To explore the reasons why men who have sex with men (MSM) with diagnosed HIV test for sexually transmitted infections (STIs) away from their usual care provider without disclosing their HIV infection.
Methods Cross-sectional internet panel survey of MSM.
Results 9.4% of men with diagnosed HIV reported ever testing for STIs away from their usual HIV care provider without disclosing their HIV infection, and 4.4% had done so in the last year. Reported benefits were the convenience of using an alternative service and the avoidance of disclosing risky sexual behaviour to known HIV care providers. The impact on continuity of care was seen as a disadvantage of seeking STI screening away from usual care providers. A minority of men who attended an alternative service reported having an HIV test.
Conclusions Prevalence estimates of undiagnosed HIV among MSM may be inflated because some men with diagnosed HIV seek STI testing away from their usual care provider without disclosing their HIV infection or accepting an HIV test. Our data suggest that the reasons for doing so are convenience and discomfort about disclosing risky sexual behaviour to HIV care providers.
- HIV TESTING
- PUBLIC HEALTH
- HOMOSEXUALITY
- SURVEILLANCE
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Background
Population prevalence of HIV in the UK is estimated by data synthesis and statistical modelling.1 Multiple data sources include the GUM Anon survey that tests unlinked, anonymised residual samples of blood taken for routine syphilis testing from users of 16 genitourinary medicine (GUM) clinics. In 2011, around 24% of people living with HIV—approximately 22 600 individuals—were unaware of their infection. 8020 of them are estimated to be men who have sex with men (MSM).2
Concern has been expressed that the proportion of the undiagnosed HIV-infected population is inflated because some people with diagnosed HIV seek screening for sexually transmitted infections (STIs) at services away from their usual care provider without disclosing their HIV status.1 ,3 Research indicates that this may be the case but does not explain why. It has been suggested anecdotally that patients prefer not to explain risk-taking sexual behaviour to their usual HIV service provider.
This article makes a contribution to explaining this phenomenon using data collected from an internet panel survey of MSM resident in England.
Methods
Between December 2010 and February 2011, we recruited MSM aged 16 and over, living in England, to the internet Sigma Panel via gay dating websites, including Gaydar and ManHunt/ManHunt Cares. Men agreed to respond to an anonymous monthly survey over a 13-month period, each of which was sent on the first of the month and was available for completion for 14 days. The Panel was closed to enrolment when the first monthly survey closed. Each survey included a set of core questions about sexual behaviour and sexual health service use in the preceding month, and additional month-specific questions about a range of HIV-related precautions and risks.
In month five of the panel (completed June 2011), men with diagnosed HIV were asked: whether they had ever tested for STIs away from their usual HIV care provider without disclosing their HIV infection to that service, the most recent occasion they did this, whether they had an HIV test on that occasion and two open-ended questions on the benefits and costs of doing so.
We carried out bivariate analysis on the survey data, using SPSS, and thematic analysis of responses to the two open-ended questions.
Results
Of the 3386 men who enrolled on the Panel, 2559 (75.6%) responded to at least one of the 13 surveys, while 1540 (60.2%) responded to the Month 5 survey. Of these, 283 (18.4%) reported having diagnosed HIV.
Screening at an alternative clinic without disclosing
Six of the 283 men with diagnosed HIV did not respond to the question about STI screening at an alternative clinic without disclosure. Of the remaining 277, 26 (9.4%) indicated that they had ever had an STI screen at a service other than their usual HIV care provider without disclosing their diagnosed HIV infection. Of these 26 men, 8 reported having done so in the last 12 months, 7 between 1 and 5 years ago and 2 over 5 years ago. Nine did not respond to the question on recency. So, of the 9.4% of men who had ever sought anonymous screening, 47% had done so in the last year or approximately 4.4% of surveyed men with diagnosed HIV.
HIV testing
On their last occasion of STI screening away from their usual provider where they did not disclose their HIV infection, 4 of the 26 reported having an HIV test, 18 reported not having one and 4 could not remember or did not know whether they had.
Benefits and costs of STI screening at an alternative clinic without disclosure
Respondents were asked about the benefits of attending an alternative service for STI screening. Of the 23 who responded, 10 reported either ‘none’ or ‘don't know’. Convenience was mentioned as a benefit by six who reported that an alternative service was easier to use as it provided a walk-in clinic, a swifter service, was open at weekends or was conveniently located. One man said that it was easier to attend his HIV clinic (without explaining why he used an alternative service) and one responded ‘to keep up to date’, presumably with his STI status.
The remaining six respondents mentioned confidentiality, privacy, the avoidance of stigma and averting discussion of their sexual practices with their HIV care provider as benefits of using another service. One explained, ‘The relationship with HIV clinic staff is ongoing and I want to avoid the embarrassment of STI screening therefore I seek a more anonymous service.’ Another was more explicit, reporting that attending another service allowed him to ‘avoid discussion about frequency/nature of sexual activity with [his] HIV doctor/nurse’. A possible reason for wanting to avoid such a discussion was provided by another man who explained that attending for STI screening away from his usual care provider avoids ‘blame culture’, suggesting that he feared reprimand.
Regarding the disadvantages of STI screening away from their usual HIV care provider, 8 of the 21 who responded to this question thought that there were none or could not identify any. Five reported being inconvenienced by the time taken, distance travelled, transport costs or the cost of tests (one mentioned paying £180 to a private clinic). One added that ‘they [staff at the service] try to pressure you to have an HIV test’.
Eight men saw the resulting lack of continuity in their care as a disadvantage. In contrast to responses to the question about the benefits of keeping information from their usual sexual health service by going elsewhere, these men saw this sequestering of information as detrimental to their care. The fact that information was not shared across services meant that ‘the individual has to go through their history with someone new again and again if they use more than one clinic which can be annoying and time wasting’. Concern was expressed that a regular provider was ignorant of the ‘full picture’ and that having no history with a clinic made it ‘difficult to track possible issues with medication especially immunity to some medication which results in treatments not working’. Two men who reported the benefits of attending a clinic away from their usual provider as lack of stigma and avoidance of an uncomfortable discussion thought the cost was the loss of continuity of care.
Discussion
This community-recruited internet survey includes the largest group of MSM with diagnosed HIV asked about this topic. Our data suggest that each year about 4.4% of MSM with diagnosed HIV may have an STI screen away from their usual HIV care provider without disclosing their HIV infection. Of those, a minority have another HIV test on that occasion.
There are two main reasons reported by MSM with diagnosed HIV regarding why they choose to be screened for STIs without disclosing their HIV status. These are convenience and the avoidance of potentially uncomfortable consultations with their usual service providers if they are diagnosed with an STI or are screening frequently.
It is not clear why men who gave convenience as the reason did not disclose their HIV status when attending for screening. We speculate that men fear they may be told to go to their usual HIV care provider for an STI screen, or they anticipate censure of some kind if they disclose their HIV infection.
Responses from those who reported not wanting to affect relationships with their HIV service provider by attending for STI screening suggest that some felt ashamed of their sexual risk taking and/or expected to be reproached for their behaviour by providers with whom they had developed relationships of trust. For some, the costs of attending a different clinic were a loss of continuity of care and concern that their usual provider did not have full information about their health status.
The majority of MSM who screen for STIs without disclosing their HIV infection appear to decline an HIV test. If these men attend one of the clinics participating in the GUM Anon survey, their non-disclosure might result in overestimation of undiagnosed HIV.1
Our data have a number of limitations. Recruitment was opportunistic and we do not know the representativeness of the sample. There is evidence that respondents to on-line surveys of MSM are more likely to report high-risk sexual behaviours than those recruited to a national probability sample.4 We collected only brief qualitative responses to the benefits and costs of screening elsewhere. Further in-depth research is needed to better understand this phenomenon.
Key messages
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A minority (around 9.4%) of men who have sex with men with diagnosed HIV report ever attending STI screening services away from their usual HIV care provider.
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Reasons given were convenience and discomfort about disclosing risky sexual behaviour to known service providers.
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A minority of those attending alternative services for STI screening have another HIV test.
Acknowledgments
We thank the men who participated in the Sigma Panel 2011–2012.
Footnotes
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Handling editor Jackie A Cassell
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Contributors JD performed the data analysis and wrote the manuscript. FH coordinated the Panel study, including the design of the monthly questionnaires and all communications with respondents. DR and FH were responsible for the technical implementation of the on-line panel, undertook data cleaning and contributed to the manuscript. PW conceived the Sigma Panel and its technical specification and contributed to the manuscript.
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Funding The Sigma Panel was funded through CHAPS (Community HIV/AIDS Prevention Strategy) by Terrence Higgins Trust for the Department of Health (England).
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Competing interests None.
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Ethics approval The study was approved by the London School of Hygiene and Tropical Medicine Ethics Committee (ref: 5834).
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Provenance and peer review Not commissioned; externally peer reviewed.