How are sexual health clinics in England managing men who have sex with men who refuse to be tested for HIV?

Abstract

The aim of this study was to ascertain the existence of written policies and common clinical practices in sexual health clinics in England for the management of men who have sex with men who refuse to test for HIV. All sexual health clinics in England (n = 223) were invited to complete an online questionnaire in August–September 2014. The questionnaire covered the four domains of clinic policies, management practices, training and monitoring. We assess differences by region. Overall, 92 clinics participated. Only three clinics reported having a written policy. In contrast, most reported having a common agreed practice (94% in London vs. 71.6% elsewhere). When encountering a refusal, 72.2% of the London clinics and 53.4% of the clinics from elsewhere offered a less invasive option. Few clinics (17.4%) provided information on home sampling kits and 74.4% informed about other testing options. Eighty-seven per cent of the clinics recorded the occurrence of refusals, but only 37.8% reviewed the collected data. Providing staff with training was more common in London (94.1% vs. 73.8%). Clear policies should be developed to guide professionals when encountering men who have sex with men who refuse an HIV test. Offering less invasive testing options and information on alternative testing options could be easily introduced into routine practice. Efforts should be made to review monitoring data in order to identify implications of test refusals and introduce improvements in management of refusals.

Keywords

Europe HIV test refusal men who have sex with men

Introduction

Men who have sex with men (MSM) are the group most affected by HIV in the UK. In 2015, 3320 new diagnoses were reported among MSM, and 30% had a CD4 cell count under 350 cells/mm.¹ Furthermore, it is estimated that 12% of MSM living with HIV in the UK remain undiagnosed.¹ Increasing testing among these men could help to reduce transmission since awareness of positive serostatus leads to a reduction of risky sexual behaviours^2,3 and maximises opportunities for instigating treatment as prevention.⁴

Increasing testing frequency in this high risk population is a key priority in preventive efforts in the UK.^5,6 Current recommendations are that sexually active MSM should test annually and every three months if they have additional risks such as condomless sex (oral, genital or anal) with a new partner, or following the diagnosis of a new sexually transmitted infection (STI), with a detailed sexual history to guide testing in MSM using drugs.⁷ However, testing frequency is far from meeting these recommendations, especially among older and younger MSM.^8–10

Barriers to HIV testing have been previously identified¹¹and include fear and/or denial, stigma, discrimination, risk perception, lack of time, and inconvenience. In an attempt to increase HIV testing of at-risk populations, UK initiatives include recommending HIV testing in non-specialised clinical settings such as primary care (in areas with an HIV prevalence of over 0.2%)¹² and promoting testing outside the clinical setting.^12–14 However, the keystone of the UK diagnostic strategy are Genito-Urinary Medicine (GUM) clinics, which undertook an estimated 47% of the HIV tests carried out in the UK during 2010.¹⁵

In 2013, 102,600 tests were performed among MSM in STI clinics in England.¹⁶ Although testing coverage is high, 14% of MSM leave GUM clinics without an HIV test,¹ and some studies have shown higher HIV testing refusal in high risk MSM groups such as those with potentially STI-related symptoms^17–19 or higher self-reported risk behaviours.²⁰

This service evaluation aimed to ascertain the existence of written policies or common clinical practice for the management of MSM who refuse an HIV test, and to describe the contents of such policies and practices in GUM clinics across England.

Methods

We invited all 223 GUM clinics in England to participate in a survey on their policy and practices surrounding the management of MSM who refuse an HIV test. Clinical leads were contacted via email and asked to complete a brief online questionnaire between 28 August 2014 and 18 September 2014. The questionnaire (available upon request) was reviewed by a group of genitourinary medicine consultants and the British Association for Sexual Health and HIV (BASHH) British Co-operative Clinical Group (BCCG) prior to circulation. Three email reminders were sent to improve response rate. The project was considered as a service evaluation of current practice and as such did not require formal ethics approval.²¹

We completed a descriptive analysis stratifying the responses given by Public Health Region: London, South England, North England and Midlands and East of England. However, because of the similarity of the responses given by clinics outside London and limited sample size, we categorised the location of the clinic variable in London and elsewhere. Unless noted, we used Fisher’s exact test to assess the differences between London-based clinics and clinics located elsewhere.

To assess the size of the MSM population attending the clinics that participated, we used data from the genitourinary Medicine Clinic Activity Dataset (GUMCAD). This dataset is an electronic, pseudo-anonymised patient-level data return that contains information on all STI diagnoses made and services provided in STI clinics in England along with patient demographic information.²² Each clinic submits a quarterly data extract to Public Health England who provided us with the numbers of HIV-negative MSM attending each of the participating clinics in 2012 by clinic code.

Results

We received responses from 94 out of the 223 (42.4%) GUM clinics who were invited to participate. Two clinics were excluded from the analysis as the survey questions were not completed. Of the 92 (41.3%) clinics included in the analysis, 18 were from London (19.6%) and 74 from elsewhere: 29 from North England (31.5%), 26 from South England (28.3%) and 19 from the Midlands & East of England (20.7%). Response rates varied depending on the region: 60% for London clinics, 40.3% for clinics in North England, 41.9% in South England and 32.8% for those in the Midlands & East of England. Overall, clinics based in London served 22,419 MSM (median size n = 775), and clinics based outside of London 21,102 MSM (median size n = 167) (Mann–Whitney U test = 350.500; p = 0.02). Forty-two percent of London-based clinics served more than 1000 MSM per year in contrast to clinics outside of London (5.8%) (p < 0.001) (see Table 1).

Table 1.

Size of the participant clinics by region.

	Public Health Region
	London (n = 18)		Elsewhere^a (n = 74)		Total (n = 92)
	n	%	n	%	n	%	p
Total number of MSM served	22,419		21,102		43,521
Median size/(minimum–maximum size)	775 (24–6244)		167 (23–2255)		192 (7–6244)		0.02^b
Under 100 MSM served	2	10.5	15	21.7	17	19.3
100–199	3	15.8	26	37.7	29	33.0
200–399	3	15.8	15	21.7	18	20.5
400–999	3	15.8	9	13.0	12	13.6
>1000	8	42.1	4	5.8	12	13.6

South of England, Midlands and East of England, North of England.

Mann–Whitney U test was used to compare the median size of clinics in London vs. elsewhere.

Although only 3.3% of clinics reported having a written formal policy regarding test refusals among MSM, the majority of clinics had at least an unwritten but commonly agreed practice in this situation, with London clinics (94.5%) being more likely than those clinics outside of London (71.6%) to have a consistent approach in this situation (p = 0.03) (see Table 2). This was one of the few statistically significant differences we found in our analysis.

Table 2.

Existence of written policy or common agreed practice and management of test refusals in men who have sex with men attending sexual health clinics in England.

	London (n = 18)		Elsewhere^b (n = 74)		Total (n = 92)
	n	%	n	%	n	%	p
Existence of policy or common agreed practice	17	94.5	53	71.6	70	76.1	0.03
Topics addressed after the occurrence of a refusal
Offer information about home sampling testing	5	33.3	9	14.3	14	17.9	0.09
Offer information about other local HIV testing settings	12	85.7	49	72.1	61	74.4	0.24
Present testing as an empowering act	15	93.8	55	84.6	70	86.4	0.31
Present testing as a responsible act	14	93.3	61	89.7	75	90.4	0.56
Discuss the benefits of early diagnosis	17	100.0	68	97.1	85	97.7	0.65
Dispel myths about the need of disclosing HIV status for insurance or legal purposes	17	100.0	69	98.6	86	98.9	0.54
Emphasise that testing is confidential	17	100.0	70	100.0	87	100.0
Possibility of referral for further counseling & professional responsible for it
Do you have the option of referring him for further counseling	15	88.2	53	76.8	67	79.1	0.25
	(n = 15)		(n = 53)		(n = 68)
Health advisor^a	14	93.3	51	96.2	65	95.6	0.53
Doctor^a	4	26.7	28	52.8	32	47.1	0.07^c
Nurse^a	5	33.3	17	32.1	22	32.4	0.58
Psychologist^a	3	20.0	8	15.1	11	16.2	0.46
Alternative testing options
Offers a less invasive testing option when a MSM declines testing	13	72.2	39	53.4	52	57.1	0.06^c
	(n = 13)		(n = 39)		(n = 52)
Finger prick rapid test^a	13	100.0	32	82.1	45	86.5	0.11
Oral swab rapid test^a	3	23.1	3	7.7	6	11.5	0.15

Percentages do not add up to 100% because participants could choose one or more options.

South of England, Midlands and East of England, North of England.

Chi-square test.

After a test refusal, clinics reported that they provided information on a number of topics (see Table 2). The topic least commonly addressed was providing information on other local testing options (74.4%) including home sampling collection kits (17.9%). Furthermore, many clinics did not have the ability to offer a less invasive testing option: 27.8% of London clinics and 46.6% of clinics outside of London reported not having this option as part of their usual practice (Chi square test = 2.083; p = 0.06).

Overall, 87.1% of clinics recorded the occurrence of test refusals, and 75.6% recorded the reasons why MSM declined to get tested for HIV. However, only 37.8% of clinics reported reviewing the records on test refusals, with 71.0% reporting that the review of test refusals had led to changes in service provision (see Table 3).

Table 3.

Record and review of test refusals and staff training and assessment of competency regarding test refusals.

	London (n = 17)		Elsewhere^b (n = 68)		Total (n = 85)
	n	%	N	%	n	%	p
Records the occurrence of test refusals	15	88.2	59	86.8	74	87.1	0.618
Records the reasons for test refusals	13	76.5	49	75.4	62	75.6	0.600
Reviews the records on test refusals	8	47.1	23	35.4	31	37.8	0.377^c
	(n = 8)		(n = 23)		(n = 31)
Reviews have led to changes in clinical practice	4	50.0	18	78.3	22	71.0	0.144
Provides healthcare workers with training to manage test refusals							0.02
Formal training	6	35.3	8	12.3	14	17.1
Informal training	10	58.8	40	61.5	50	61.0
Does not provide training	1	5.9	17	26.2	18	22.0
Type of training provided	(n = 16)		(n = 48)		(n = 64)
Initial training session for new staff^a	15	93.8	40	83.3	55	85.9	0.28^c
Update sessions to all clinical staff^a	12	75.0	30	62.5	42	65.6	0.27
One-to-one support or mentoring^a	7	43.8	22	45.8	29	45.3	0.56
Assessment of staff competency in improving uptake of testing among test refusers	5	29.4	10	15.4	15	18.3	0.16

Percentages do not add up to 100% because participants could choose one or more options.

South of England, Midlands and East of England, North of England.

Chi-square test.

Approximately, 26% of the clinics outside of London reported not providing training to manage test refusals in comparison with 5.9% of London clinics (p = 0.02). The assessment of staff competency in improving the uptake among MSM declining testing was reported by only 18.3% of clinics (see Table 3).

Discussion

There are no published studies that assess policy and practice in GUM clinics for when health care professionals encounter MSM who refuse to take an HIV test. There is much good practice in sexual health clinics in England on the areas analysed in this study: topics addressed after the occurrence of a refusal, possibility of referral for further counselling, alternative testing options, training of healthcare workers and recording and reviewing of test refusals. However, these data demonstrate that within a human rights framework of individual autonomy in healthcare, GUM clinics in England could further optimise the clinical management of MSM declining HIV testing, and this may be more marked in clinics outside of London. We believe that this is critical and may lead to an improvement in testing acceptance rates of this key population.

A tiny minority of clinics reported having a formal written policy, although most London clinics reported having a common agreed practice, which was not reported by approximately one quarter of clinics outside of London. This regional difference could be a result of a higher MSM case load in the London clinics. It could also be a reflection of the HIV prevalence in London, which is the highest in England, with the prevalence estimated to be 135 per 1000, compared to 39 per 1000 in the rest of England and Wales.¹

The National Institute for Health and Care Excellence (NICE) Public Health Guidance on increasing the uptake of HIV testing among MSM²³ highlights the importance of informing MSM who decline testing about how to access other testing services. This advice was not provided by one quarter of clinics, and was especially marked in clinics outside of London. Online self-sampling services could be a valuable alternative in rural areas and smaller-sized cities where the range of settings where an HIV test can be carried out is smaller. However, at the time of the survey, self-sampling was in the pilot stages. Thus, the percentage of clinics signposting such services may well have increased since study completion. Additionally, HIV self-testing has begun to be commercialised in the UK. This testing option was not included in the survey, but could add another valuable option for those who refuse testing.

Good practice was demonstrated by the majority of clinics who reported addressing topics that have been well described as barriers for testing.^24–26 Furthermore, most clinics had the possibility, if consented to by the patient, of referring MSM declining testing for further counselling. Some brief behaviour change interventions such as motivational interviewing have shown promising results in other areas²⁷ and could be an effective way to increase testing uptake or to inform those who do not want to test about other risk reduction strategies (pre-exposure prophylaxis, serosorting, etc.). Although following a test refusal it is important to ensure that the reasons for declining a test were not based on misconceptions, staff must be mindful when conducting discussions that they remain respectful of the client’s autonomy and be willing to acknowledge that MSM who decline an HIV test may have logical reasons (e.g. having been tested very recently, preferring to test in a different setting, etc.)

We found that 4 out of 10 clinics did not offer less invasive testing options to MSM who declined to test for HIV. Offering rapid testing as an alternative for those who decline could help to remove some well-described barriers, by reducing anxiety derived while waiting for a test result,^19,28 and by providing a less invasive option for needle-phobic patients. This is especially true for oral-based rapid testing, which is the option less frequently offered by the surveyed clinics. However, advantages need to be weighed against the increased costs of providing this option and the high false-positive rates reported when using oral-based rapid test kits.²⁹

The vast majority of clinics collect data on HIV test refusals in MSM, with most of these clinics also recording reasons given by patients for declining an HIV test. However, only 40% of clinics review these data – a necessary step in service improvement planning. Seven out of 10 of those clinics who reviewed their data on test refusals reported that this process led to service changes, demonstrating that monitoring these data is an effective way to optimise clinical practice.

Approximately one quarter of the clinics outside of London did not provide any kind of training (formal or informal), which could be used to raise clinicians’ awareness on some of the points addressed above (i.e. providing information on other testing options) and also to improve knowledge.

Several aspects need to be considered when interpreting the results of the present study. The GUM clinics that answered our survey might not be representative of clinics in England as only 41.2% of clinics completed the questionnaire. This is especially true in the Midlands & East of England where the response rate was particularly low. Additionally, those clinics that did not respond might be the ones more likely not to have policies and/or practices in place.

Furthermore, although GUM clinics perform a high number of tests, they are not representative of all services that offer testing in England – as testing uptake in general healthcare settings is much lower than in GUM clinics, this study may represent the best of practice in England.¹⁵

Our service evaluation reveals several areas of the management of MSM in GUM clinics that could be improved in order to minimise the impact of test refusals in this high risk population, and this is especially pertinent in clinics outside of London. We recommend that clinics produce guidelines detailing expected actions when managing MSM declining testing for HIV, which could include detailing which additional topics should be discussed, the offer of a less invasive testing method, offering information on other available local service options, and referral for further counselling. A joint effort with public health stakeholders to audit test refusals should be made, not only to identify barriers and introduce improvements in management of refusals but also to understand the impact of refusals in delayed diagnosis.

Footnotes

Declaration of conflicting interests

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

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

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