HIV pre-test practices: an online survey examining perceptions of informed consent and pre-test information delivery in health care settings across the WHO European Region

Abstract

The objective of this study was to gather health professionals’ perceptions about gaining informed consent and delivering HIV pre-test information. An online self-report survey was completed by 338 respondents involved in HIV testing in 55 countries in the WHO European Region. Nearly two thirds (61.5%) of respondents thought that HIV testing guidelines used in their country of work included recommendations about pre-test information; 83% thought they included recommendations regarding obtaining informed consent. One third (34%) of respondents thought that written informed consent was required; respondents from Eastern Europe and Central Asia were more likely to perceive this as required. Respondents from Western Europe thought pre-test information about the following aspects was significantly less likely to be addressed than respondents in other regions: the right to decline a test; services available after a positive test; laws/regulations impacting someone being tested and receiving a positive test result; potential risks for a client taking an HIV test; the possible need for partner notification after a positive test result. Results offer insight into perceived HIV pre-test practices in all but two national settings across the WHO European Region, and can be used in the development and evaluation of future HIV testing guidelines in the WHO European Region. Findings highlight that practices of obtaining written informed consent depart from current guidelines in some HIV testing settings. Furthermore, findings underscore that it is uncommon for pre-test information to address legal and social risks and harms that people testing HIV-positive may incur. This differs from the most recent global WHO guidelines emphasising the importance of such information, and raises important questions regarding the implications and appropriateness of the currently dominant focus of recommendations on streamlining the HIV testing process.

Keywords

HIV informed consent pre-test information Europe

Introduction

Regional and global HIV testing guideline documents assist national programme managers, service providers, and people delivering community-based programmes in planning for and providing HIV testing services.^1–3 Guidelines especially relevant to the World Health Organisation (WHO) European Region are provided by the European Centre for Disease Prevention and Control (ECDC),⁴ the European Office of the International Union against Sexually Transmitted Infections (IUSTI)⁵ and the WHO Regional Office for Europe.⁶ New global guidelines have recently been published by WHO,³ to replace earlier guidelines produced by the WHO and the Joint United Nations Programme on HIV/AIDS (UNAIDS).⁷ Guidelines for gaining informed consent and delivering pre-test information are important in relation to meeting three new global targets for the HIV response by 2020: ensuring that 90% of people with HIV are diagnosed, and through effective connection to treatment services, that 90% of people with diagnosed HIV are on antiretroviral treatment (ART), and that 90% of people on ART have sustainably supressed viral load.^3,8

In a recent review we examined recommendations relating to the delivery of pre-test information and informed consent contained in these guideline documents relevant to the WHO European Region.² In this paper we update this analysis in light of the latest WHO guidelines.³ The consensus across guidelines is that informed consent must be gained from all individuals prior to having an HIV test, individually, in private, and confidentially and that this can be done verbally, without the need for written consent. The latest WHO guidelines recommend that during the consent process people receiving HIV testing should be informed of both the testing process and their right to decline testing.³

There is also agreement across guidelines regarding the recommendation that a pre-test assessment or discussion serves the purpose of providing pre-test information rather than pre-test counselling. The latest WHO guidelines define pre-test information as ‘a dialogue and the provision of accurate information by a trained lay provider or health worker before an HIV test performed’ (p. xiv), and explain that the provision of pre-test information and post-test counselling is part of the full range of HIV testing services.³ The guidelines we reviewed all note that pre-test information can be delivered verbally or via other methods (e.g. an information sheet). The latest WHO guidelines also specify that pre-test information can be provided in a group setting, provided all individuals can ask questions in private, if required.³

There is agreement across guidelines about the importance of providing patients with what might be termed a minimum standard of pre-test information.² This includes information about the voluntary and confidential nature of the test and test result, the reason for and benefits of testing, information about the test procedure and delivery of the test result, and the client’s right to decline a test without affecting his/her access to HIV-related services or general medical care, as well as providing time for clients to ask questions. In addition, the latest WHO guidelines recommend providing information about the potential for incorrect results if a person is on ART, and including a brief description of prevention options and encouragement of partner testing.³

There are no shared recommendations in the guidelines relevant to the WHO Europe Region we reviewed about the extent to which clients should be informed about the possible implications of an HIV test result.² The latest IUSTI guidelines⁵ recommend that information about the window period, the possible need for a repeat test, and the potential offer of STI testing and post-exposure prophylaxis (after sexual exposure, if indicated and available) may need discussing. IUSTI guidelines also recommend that a client’s sexual history and HIV testing history may need to be obtained, and that risk reduction, the need for referral to other services, condom use, safe sex behaviours, and national blood donation policies may need to be discussed.⁵ Global and regional WHO guidelines^3,6 recommend that pre-test information should include a description of the services available in case of an HIV-positive diagnosis (including where ART is provided), and the ‘potential risks of testing to the client in settings where there are legal implications for those who test positive and/or for those whose sexual or other behaviour is stigmatized’ (p21).³ The latest WHO guidelines specify that individual risk assessment and individualised counselling during the delivery of pre-test information is no longer recommended.³

While similarities and differences in recommendations relating to the pre-test HIV testing processes in guidelines relevant to the WHO European Region have been reviewed, little is known about current practice. Addressing this knowledge gap, this paper reports a first study about expert perceptions of pre-test HIV testing practices in health care settings across the WHO European Region, and in particular examines the extent to which experts perceive these practices to follow current HIV testing recommendations.

Methods

An online survey was conducted between May and August 2014, amongst an opportunistic sample of health service providers, representatives from non-governmental organisations (NGOs), and policy makers involved in HIV testing policy and practice in national settings across the WHO European Region. Drawing on information from National Focal Points and online sources (e.g. European Commission HIV/AIDS Civil Society Forum and HIV in Europe websites), the sample was built by identifying and contacting at least two individuals working in each of the three roles in each national setting.

Three repeat invitations were sent to 990 people, explaining the study purpose, and providing access to the survey in English, Spanish, Portuguese, German, and Russian. No incentive was offered for participation. This paper reports on the 338 (34.1%) eligible respondents; this response rate is similar to other online surveys amongst health professionals.⁹ Respondents were excluded if they did not consent, were ‘not at all’ or ‘rarely’ involved in HIV testing, did not provide information about their country of work, worked in a country not in the WHO European Region, or worked in a role that took them across multiple countries.

A self-report questionnaire consisting of 55 questions was completed by participants. Answers were obtained through yes/no responses. Descriptive analyses were conducted regarding sample characteristics and to assess respondents’ perceptions regarding HIV testing practices. Chi square tests were used to compare perceived practices by sub-region and by the sector in which respondents worked. The small number of participants working in government agencies or other organisations meant that this comparison was limited to health and NGO sector workers. Only highly significant differences (p < 0.001) are discussed in the text; none were found for sector-based analyses. IBM SPSS Statistics version 22 was used for data analysis.

Results

Respondents worked for NGOs (49.4%), in health services (32.8%), as policy makers in non-health government agencies (6.2%), and in other organisations (11.5%) (e.g. prisons, education and research, or international development organisations). Health sector respondents worked in a variety of services, including standalone HIV testing services (38.3%), STI clinics (19.9%), drug-related services (16.6%), community outreach/testing promotion (10.9%), or other services (14.3%; e.g. needle and syringe program, specialist HIV service, HIV counselling, antenatal care). The roles of health sector respondents included medical doctor (54.1%), health service manager (18.0%), and other roles (27.9%) (e.g. nurses, health care assistants, counsellors, psychologists, or social workers). The gender of respondents was reported as male (48.2%), female (50.3%), transgender (0.9%), and intersex (0.6%). Respondents were aged 22–30 (9.2%), 31–40 (28.7%), 41–50 (31.1%), and >50 (31.1%). Work experience ranged from up to 10 years (36.1%), to 11–20 years (42.9%), and more than 20 years (21%); 74% had postgraduate qualifications and 22% had undergraduate qualifications. Responses were received from individuals working in each of the WHO European Region Countries, excluding San Marino and Iceland; 110 respondents (32.5%) were from Eastern Europe and Central Asia, 126 (37.3%) were from Central Europe, and 102 (30.2%) were from Western Europe.*

Content of HIV testing guidelines

Survey findings indicate that 61.5% of respondents thought that HIV testing guidelines used in their country of work included recommendations about providing pre-test information. Higher percentages of respondents thought that guidelines contained recommendations about obtaining informed consent (83%), delivery of HIV-positive (82.6%) and HIV-negative (81.5%) test results, delivery of post-test discussion for people receiving HIV-positive (84.5%) and HIV-negative (74.3%) test results, and connection of people receiving HIV-positive test results to specialist treatment and care services (84.9%). Respondents from Eastern Europe and Central Asia (17.0%) thought that recommendations regarding pre-test information were less likely (p < 0.001) to be provided in guideline documents than respondents from Western Europe (81.1%) and Central Europe (85.4%).

Informed consent practices

Respondents thought that confidentiality of the test and the result was often or always assured (86.3%), and that informed consent was often or always obtained on an individual basis (83.1%), in private (75.7%), and in the presence of a health care provider (67.8%). One third (34%) of respondents thought that written informed consent was required before undertaking an HIV test in their country of work. Respondents from Eastern Europe and Central Asia (59%) thought that it was more likely (p < 0.001) that consent was obtained in writing in their settings than respondents from Central Europe (28%) and Western Europe (14.1%).

Pre-test information

Pre-test information was typically perceived as being delivered verbally (37.9%), or through a combination of verbal communication and an information sheet (62.1%). Table 1 illustrates respondents’ perceptions about which aspects are discussed during the delivery of pre-test information, including issues relevant before taking an HIV test, and those which relate to an HIV test result.

Table 1.

Health professionals' perceptions regarding the delivery of pre-test information.

	Total (%)	Regional analysis				Sector analysis
	Total (%)	Western Europe (%)	Central Europe (%)	Eastern Europe and Central Asia (%)	p-value	Health (%)	NGO (%)	p-value
Issues relevant before taking an HIV test
Assurance that the test and result will remain confidential	82.8	71.1	86.5	89.7	0.003	87.9	80.6	0.150
Assurance that the HIV test is voluntary	78.5	68.7	82.7	82.8	0.034	80.2	79.8	0.945
Discussion of clinical benefits of testing (positive result)	72.6	71.1	73.1	73.6	0.929	79.1	70.5	0.153
Opportunity for the person to ask questions	71.9	66.3	78.8	69.0	0.125	78.0	70.5	0.215
Discussion of the preventative benefits of testing	70.1	56.6	76.0	75.9	0.006	72.5	73.6	0.854
Explanation of the reason for testing if initiated by provider	69.3	54.2	76.0	75.9	0.002	75.8	64.3	0.070
Making arrangements for the person to collect the test results	64.6	63.9	70.2	58.6	0.246	74.7	58.9	0.015
Information about the person’s right to decline a test, and implications	62.8	44.6	66.3	75.9	<0.001	70.3	59.7	0.105
Issues relating to HIV test result
Explaining and assessing the window period for HIV testing	79.6	67.5	86.5	82.8	0.004	81.3	81.4	0.989
Information of services available after a positive test result	77.4	66.3	76.0	89.7	0.001	76.9	81.4	0.418
Assessing the client's knowledge of risk reduction strategies	70.8	55.4	77.9	77.0	0.001	75.8	70.5	0.386
Exploration of the client's misperceptions about HIV infection and transmission	65.7	48.2	76.0	70.1	<0.001	67.0	65.9	0.860
Explanation of possible need for partner notification after positive test	62.4	42.2	71.2	71.3	<0.001	63.7	60.5	0.623
Obtaining a person's sexual history	58.8	54.2	69.2	50.6	0.020	59.3	60.5	0.867
Information of services available after a negative test result	53.6	38.6	62.5	57.5	0.003	57.1	53.5	0.592
Information about potential risks for a client taking a test (e.g. stigma, discrimination)	44.9	22.9	58.7	49.4	<0.001	45.1	47.3	0.744
Information about laws/regulations impacting the person taking a test and receiving a positive result	40.1	18.1	45.2	55.2	<0.001	48.4	38.0	0.125

Analysis showed a range of sub-regional differences in respondents’ perceptions about the practice of delivering pre-test information (see Table 1). In relation to issues relevant before taking an HIV test, significantly (p < 0.001) fewer respondents from Western Europe than other sub-regions thought that information was provided about the person’s right to decline a test and the implications of doing so. Similar differences were seen in relation to pre-test discussion about a number of issues relating to an HIV test result, including the provision of information about services available after a positive test, laws/regulations impacting a person taking a test and receiving a positive test result, the potential risks for a client taking an HIV test (e.g. stigma, discrimination), the possible need for partner notification after a positive test result, assessment of a client’s knowledge of risk reduction strategies, and discussing misperceptions about HIV infection and transmission.

Discussion and conclusions

An important contrast was found between respondents’ perceptions of how informed consent is gained in their country of work and recommendations in guideline documents for the WHO Europe Region. One third of respondents (34%) thought that written informed consent is required in their national setting, with more respondents from Eastern Europe and Central Asia thinking this was required in their country than respondents from Western Europe or Central Europe. These findings are at odds with the recommendations in regional^4–6,10 and global³ HIV testing guidelines, that informed consent can be obtained verbally and that written consent is not required.

Analysis of recommendations across guidelines highlights that pre-test information can address two distinct sets of issues: those relevant to taking an HIV test and those relevant once an HIV test result is received.² Findings highlight that respondents think that pre-test information addresses a mix of both sets of issues, rather than only one set or the other. Sub-regional comparisons of experts’ views of current practice suggest that a fuller version of pre-test information may be delivered in Central Europe and Eastern Europe and Central Asia than in Western Europe. Since the early 2000s, a more routine approach to HIV testing in clinical settings has been promoted to increase the offer and uptake of testing by reducing barriers and stigma associated with an HIV test.¹¹ This has included a move away from comprehensive pre-test counselling to addressing essential aspects of pre-test information for which there is no need for specialist counselling skills beyond that required for normal clinical practice. Findings illustrate that this professed normalisation of HIV testing is not yet perceived to have happened across all parts of the WHO European Region.

Sub-regional differences in experts’ perceptions of the extent to which possible risks and stigma that might be experienced after an HIV test, in particular a positive result, are discussed with clients and are worthy of note. Guidelines by WHO^3,7 and WHO Europe⁶ recommend that these issues are included as part of pre-test information before an HIV test. More respondents from Central Europe and from Eastern Europe and Central Asia than from Western Europe thought that, in their settings, pre-test information would be provided about the potential risks for a client taking a test, and the laws and regulations impacting a person taking a test and receiving a positive test result. A recent publication by UNAIDS¹² discusses problematic areas in the global response to HIV. In particular it points to punitive laws and abusive law enforcement practices in Eastern Europe and Central Asia that affect those most at risk of HIV infection (i.e. people who inject drugs, gay men and other men who have sex with men, transgender people, and sex workers) by restricting their access to HIV-related information and services. The most recent global WHO guidelines³ advocate strongly for dialogue about these issues during the delivery of pre-test information. In view of the current wave of recommendations to streamline HIV testing pre-test practices, especially in Western Europe, questions must be asked as to whether the exclusion of information about possibly major legal and social risks and harms as part of the pre-test information and consent seeking processes is appropriate and ethically sound advice across all WHO European Region countries until these legal issues are resolved.

We acknowledge the limitations resulting from a survey of perceptions of respondents. Furthermore we recruited a convenience sample of health professionals involved in HIV testing policy and practice due to the unavailability of a comprehensive sampling frame for this population. Despite these limitations, this study is unique in its ability to present perceptions of health professionals about the process of gaining informed consent and delivering pre-test information in all but two of the national settings across the WHO European Region. The reported data point to important sub-regional differences that will need to be considered when developing new regional and national HIV testing guidelines. Future HIV testing guidelines for the WHO European Region might usefully recognise the need to include discussion about the legal and social risks for clients receiving positive HIV test results during the delivery of pre-test information in some parts of the WHO Region. Existing and future national HIV testing guidelines could ensure that recommendations about informed consent procedures adhere to international best practice.

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 disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was funded by the HIV in Europe Initiative and supported by the HIV in Europe Steering Committee.

Note

*Western Europe consists of Andorra, Austria, Belgium, Denmark, Finland, France, Germany, Greece, Iceland, Ireland, Israel, Italy, Liechtenstein, Luxembourg, Monaco, Netherlands, Norway, Portugal, San Marino, Spain, Sweden, Switzerland, and United Kingdom. Central Europe consists of Albania, Bosnia and Herzegovina, Bulgaria, Croatia, Cyprus, Czech Republic, Estonia, Former Yugoslav Republic of Macedonia, Hungary, Kosovo, Latvia, Lithuania, Malta, Montenegro, Poland, Romania, Serbia, Slovakia, Slovenia, and Turkey. Eastern Europe and Central Asia consists of Armenia, Azerbaijan, Belarus, Turkmenistan, Georgia, Kazakhstan, Kyrgyzstan, Republic of Moldova, Russian Federation, Tajikistan, Ukraine, and Uzbekistan. These sub-regions used are based on regional categorisations described by the United Nations Environment Programme's GEO5 report and UNAIDS.

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