HIV Counselling

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PatientPlus articles are written by UK doctors and are based on research evidence, UK and European Guidelines. They are designed for health professionals to use, so you may find the language more technical than the condition leaflets.

Related separate articles include Acquired Immune Deficiency Syndrome (AIDS), Complications of HIV infection, HIV and Skin Disorders, Human Immunodeficiency Virus (HIV), Managing HIV-positive Individuals in Primary Care, HIV Post-exposure Prophylaxis and Primary HIV Infection.

Many GPs were initially reluctant to undertake HIV testing with associated counselling, considering it as complicated and time-consuming. However, over time this reluctance has diminished with the increasing realisation that 'in-depth' counselling can be replaced by an informal discussion by doctors or nurses.[1][2] 

There have been significant developments in the treatment of HIV in recent years. This progress and up-to-date knowledge about HIV and the epidemiology of HIV infection have informed the guidelines on counselling and testing for HIV.[3]

Current guidance is prefaced by a number of important assertions:

  • It is possible, with the advent of new and improved treatment, for the majority of those living with HIV to remain fit and well on treatment.
  • It is estimated that around 34% of HIV-infected men and 29% of HIV-infected women in the UK were undiagnosed in 2013. Many heterosexuals remain undiagnosed until testing is prompted by HIV-related symptoms late in the course of illness. The number of people diagnosed late with a CD4 count of less than 350 cells/mm3 has declined from 57% (4,290/7,350) in 2004 to 42% (2,500/5,960) in 2013. However, this is mainly due to fewer diagnoses in people who were born in sub-Saharan Africa and is not a reason for complacency.[4] 
    Patients should therefore be offered and encouraged to accept HIV testing in a wide range of settings.
  • Patients with specific indicator conditions should be routinely recommended to have an HIV test.
  • Prevailing guidelines recommend that doctors, nurses and midwives should be able to obtain informed consent for an HIV test in the same way that they currently do for any other medical investigation.[3] 

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  • There were an estimated 107,800 people living with HIV in the UK in 2013 - 24% of whom were unaware of their infection.
  • There were 6,000 new diagnoses in 2013 in the UK. Rates have been dropping gradually since 2005, largely due to a decrease in the number of diagnoses reported among heterosexuals born in high HIV prevalence countries.

For further details of epidemiology, see separate article Human Immunodeficiency Virus (HIV).

Despite World Health Organization (WHO) guidelines, there is a lack of consensus on testing strategy across Europe.[5] However, in the UK:

  • Universal HIV testing (where all individuals are offered and recommended an HIV test routinely but can refuse testing) is recommended in all the following:
    • Genitourinary medicine (GUM) or sexual health clinics.
    • Antenatal services.
    • Termination of pregnancy services.
    • Drug dependency programmes.
    • Healthcare services for those diagnosed with tuberculosis, hepatitis B, hepatitis C and lymphoma.
  • HIV testing should be routinely offered and recommended to the following patients:
    • All patients presenting for healthcare where HIV, including primary HIV infection, enters the differential diagnosis (see separate Primary HIV Infection article).
    • All patients diagnosed with a sexually transmitted infection.
    • All sexual partners of men and women known to be HIV-positive.
    • All men who have disclosed sexual contact with other men.
    • All female sexual contacts of men who have sex with men (MSM).
    • All patients reporting a history of injecting drug use.
    • All men and women known to be from a country of high HIV prevalence (>1%) - see up-to-date WHO HIV/AIDS Data in 'Further reading & references' section, below.
    • All men and women who report sexual contact abroad or in the UK with individuals from countries of high HIV prevalence (as above).
  • HIV testing should also be routinely performed in the following groups in accordance with existing Department of Health guidance:
    • Blood donors.
    • Dialysis patients.
    • Organ transplant donors and recipients.
    • Members of staff with a needlestick injury.
  • An HIV test should be considered more widely when there is a particularly high HIV prevalence in the local population. Data from Public Health England should be consulted.[6] If the HIV prevalence exceeds 2 in 1,000 population then testing should be offered to all registered patients. The introduction of universal HIV testing should be considered in such circumstances.

Repeat testing should be provided for the following:

  • All individuals who have tested HIV-negative but where a possible exposure has occurred within the window period (the time between infection and a positive test result).
  • MSM - annually (more frequently if clinically suspect seroconversion or ongoing high-risk exposure).[7]
  • Injecting drug users - annually (more frequently if clinically suspect seroconversion).
  • Antenatal care:
    • If HIV test at booking is refused, a further offer of testing should be made.
    • If they decline again, a third offer of a test should be made at 36 weeks.
    • Women presenting to services for the first time in labour should be offered a point of care test (POCT).
    • A POCT may also be considered for the infant of a woman who refuses testing antenatally.
    • In areas of higher seroprevalence, or where there are other risk factors, women who are HIV-negative at booking may be offered a routine second test at 34-36 weeks of gestation.

Testing including confirmation should follow the standards laid out by the British HIV Association.[3] All acute healthcare settings should expect to have access to:

  • Urgent HIV screening assay result within eight hours (definitely within 24 hours), to provide the best support for exposure incidents.
  • Routine results within 72 hours.

There are two methods in routine practice for testing for HIV, involving either venepuncture and a screening assay where blood is sent to a laboratory for testing or rapid POCT.

Blood tests

  • The recommended first-line assays:
    • Fourth-generation assay tests for HIV antibody and p24 antigen simultaneously - have the advantage of reducing the time between infection and testing HIV-positive to one month.
    • Third-generation assay detects antibody only - has the disadvantage of giving a positive result after a longer (6- to 7-week) interval.
    The better fourth-generation tests are not offered by all primary screening laboratories.
  • HIV RNA quantitative assays (viral load tests):
    • These are not recommended as screening assays because of the possibility of false positive results. They offer only a marginal advantage over fourth-generation assays for detecting primary infection.

Confirmatory assays

Laboratories undertaking screening tests should be able to confirm antibody and antigen/RNA. The requirement is for:

  • Three independent assays (able to distinguish HIV-1 from HIV-2).
  • Ideally, these tests could be provided within the primary testing laboratory but may be sent to a referral laboratory.
  • All new HIV diagnoses should be made after appropriate confirmatory assays and after testing a second sample.

POCT

  • This testing offers the advantage of a result from either a fingerprick or mouth swab sample within minutes.
  • The tests have advantages of ease of use when venepuncture is not possible but these must be balanced against the disadvantages of a test which has reduced specificity and sensitivity (compared with fourth-generation laboratory tests).
  • All positive results must be confirmed by serological tests (as there will be false positives).
  • POCT is recommended only in:
    • Clinical settings where a rapid turnaround of testing is required.
    • Community testing sites.
    • Urgent source testing in cases of exposure incidents.
    • Circumstances where venepuncture is refused.

Home testing kits

Home testing kits are now available for purchase and were made legal for use in the UK in 2013. However, there are concerns about their reliability and it is advisable to confirm results (both positive and negative) by arranging a test via a healthcare professional.

The primary purpose of pre-test discussion is to establish informed consent for HIV testing. Lengthy pre-test HIV counselling is not a routine requirement.

The pre-test discussion
This discussion should cover:
  • The benefits of testing to the individual.
  • Clear details of how the result will be given.
The discussion might also cover:
  • Why the test might be particularly recommended in some patients (see 'Who should be offered the test?', above).
  • Issues raised by the patient about the test and HIV infection. Written information can help. Such issues often include:
    • Risk and lifestyle.
    • Benefits of knowing HIV status and treatment possibilities.
    • What tests are available and which is recommended.
    • The window period for testing.
    • Seroconversion.
    • The difference between HIV and AIDS.
    • Confidentiality.
There are particular situations which require more time and explanation. These include:
  • High-risk behaviour (multiple partners, drug injection, HIV symptoms, positive partner).
  • A patient refusing the test.
  • Some patients who may need additional help to make a decision. Examples include:
    • Language difficulties when English is not the first language.
    • Children and young people.
    • Those with learning difficulties or mental health problems.
  • If the patient is still uncertain about wanting a test, give time to consider and return. They may wish to talk anonymously in confidence to a trained telephone advisor on one of the national helplines. These are the Sexual Health Line England (0300 123 7123), Sexual Health Line Scotland (0800 224488), Sexual Health Local Services Wales (0845 46 47) and the Terrence Higgins Trust Helpline (0808 8021221).

Is further counselling advisable?

Examples include:

  • A patient refusing the test:
    • Explore to ensure the reasons are valid and beliefs correct.
  • If refusing because of implications for insurance or criminal prosecution. Again, this requires further exploration to ensure the reasons are valid and correct. For example:
    • Insurance implications:
      • The Association of British Insurers (ABI) code of practice 1994 states that questions regarding whether an individual has ever had an HIV test or a negative result should not be asked.
      • Applicants should, however, declare any positive results if asked (as with any other medical condition).
    • Criminal prosecution for transmission:
      • Concern about this issue should not be a barrier to testing.
      • There have been a number of prosecutions of individuals under the Offences Against the Person Act 1861 for reckless HIV transmission. This has included a prosecution of an individual who had not been HIV tested. More detailed guidance on the legal implications of this may be needed from others.

Documentation

As with any other investigation, the following should be recorded in the notes:

  • The offer of an HIV test, together with any relevant discussion or written information.
  • The reasons for refusing a test, which should be documented.

Written consent is unnecessary and may discourage HIV testing by exceptionalising it.

Of prime importance is to give clear instructions as to how the patient will receive the result, with particular attention as to how a positive result will be given to the patient. Arrangements should always be discussed and agreed with the patient at the time of testing.

In person or in writing?

Arrange to give the HIV test results in person for patients:

  • Likely to have an HIV-positive result.
  • With mental illness or at risk of suicide.
  • For whom English is a second language.
  • Under 16 years old.
  • Who may be highly anxious or vulnerable.
  • In hospital.

Post-test discussion for individuals who test HIV-negative

The post-test discussion for individuals who test HIV negative
Counselling should incorporate:
  • Advice to reduce the risk of acquiring sexually transmitted infections (STIs).
  • Advice relating to post-exposure prophylaxis (PEP) to individuals at high risk of repeat exposure to HIV infection. This is best achieved by onward referral to GUM or HIV services.
  • The need for a repeat HIV test, if still within the window period after a specific exposure, should be discussed. Fourth-generation tests shorten the time from exposure to seroconversion but a repeat test at three months is still recommended to exclude HIV infection.
  • Advice on equivocal results. Occasionally, HIV results are reported as reactive or equivocal. Such patients should be promptly referred to specialist care (as patients may be seroconverting).

Post-test discussion for individuals who test HIV-positive

The post-test discussion for individuals who test HIV-positive
This needs to be done with care and consideration that befits the importance of such a result.
  • Follow good clinical practice when breaking bad news:
    • Give the result face to face in a confidential environment.
    • Give the information and result in a clear and direct manner.
    • Use an appropriate confidential translation service if there are any language difficulties.
  • If a positive result is being given by a non-specialist (in HIV or GUM) establish a clear pathway for specialist referral prior to giving the result.
  • Any individual testing HIV-positive for the first time should be seen by a specialist (HIV clinician, specialist nurse or sexual health advisor or voluntary sector counsellor) within 48 hours (certainly within two weeks) of receiving the result. The specialist will address:
    • Assessment of disease stage.
    • Treatment plan.
    • Partner notification.

Non-attendance for positive results

It is recommended:

  • To have an agreed recall process following failure to return for a positive result (as with any other medical condition).
  • It is the responsibility of the healthcare professional requesting the test to ensure that all results of investigations requested be received and acted on appropriately.
  • If attempts to contact the patient are unsuccessful, advice should be sought from the local GUM/HIV team.

Early diagnosis of HIV now clearly improves prognosis. There are benefits of early diagnosis, to both the individual and the community. The number of late diagnoses has reduced from 57% in 2004 to 42% in 2013. The largest group represented in this category was heterosexuals over the age of 50.[4] 

It is hoped that publicising the importance of early diagnosis and easier accessibility to testing (for example, by improving the reliability of home testing kits) will help to increase uptake still further.[9] 

There are some special cases that merit discussion or further comment:

Pregnancy

Testing in pregnancy poses additional questions.[10][11] It is now recommended routinely.[12] 

For further detail see the separate article Management of HIV in Pregnancy.

PEP

See separate HIV Post-exposure Prophylaxis article.

Infants and young children[3]

This raises additional questions about consent and can pose additional problems with post-test counselling.[13][14] The following infants and children should be considered for HIV testing:

  • Mother has HIV, or may have died of an HIV-associated condition.
  • Those born to mothers known to have HIV in pregnancy.
  • Those born to mothers who have refused an HIV test in pregnancy.
  • Those who are presented for fostering/adoption where there is any risk of infection.
  • Those newly arrived in the UK from high-prevalence areas.
  • Those with signs and symptoms consistent with an HIV diagnosis.
  • Those being screened for congenital immunodeficiency.
  • In circumstances of PEP.
  • In cases where there has been sexual abuse.

See the separate article Congenital HIV and Childhood AIDS.

Testing where the patient lacks capacity to consent

This includes, for example, when the patient is unconscious. Detail can be found in appendix 4 of the guidance.[3]

Ignorance and denial are important contributory factors to the spread of HIV in Africa and elsewhere.

At a national level, leaders do not like to admit that their country has a problem. Even the great Nelson Mandela denied the problem when he was president of South Africa but he acknowledged his mistake and expended much time and energy to promote awareness of the disease that so devastated his country. However, he was succeeded by President Mbeki who denied that HIV was the cause of AIDS. The current president, Jacob Zuma, has himself come in for some criticism but in his defence his government has prioritised the treatment of HIV and prevention of new infections.[15] 

The Roman Catholic Church has been strongly criticised for its policy with regard to condoms and contraception. There were signs that there might be some easing of the Church's stance when Pope Francis was elected in 2013 but his recent comments on a tour of Thailand have suggested a hardening of his attitude.[16][17] 

This infection has killed millions and devastated entire communities. It needs to be fought with education and information, particularly about how it is spread and how it can be curtailed. This requires efforts at a global and national level but, for the individual, the first step must be to reduce the risk of spread. We need more testing at an asymptomatic stage to implement early treatment and to prevent spread. Healthcare professionals in primary care have an important role to play in this respect.[18] 

Further reading & references

  1. Sexually Transmitted Infections in Primary Care; Royal College of General Practitioners and British Association for Sexual Health and HIV (Apr 2013)
  2. HIV tips, Testing in Practice; Medical Foundation for HIV and Sexual Health (MEDFASH), 2015
  3. UK national guidelines for HIV testing; British HIV Association (September 2008)
  4. HIV in the United Kingdom: 2014 Report; Public Health England
  5. Mounier-Jack S, Nielsen S, Coker RJ; HIV testing strategies across European countries. HIV Med. 2008 Jul;9 Suppl 2:13-9.
  6. HIV: data tables; Public Health England, 2015
  7. Increasing the uptake of HIV testing among men who have sex with men; NICE Public Health Guideline, March 2011
  8. HIV Testing; HIVaware, 2015
  9. MacOwen A; HIV testing: New technologies and strategies for those at higher risk, 2014.
  10. Management of HIV in Pregnancy; Royal College of Obstetricians and Gynaecologists (June 2010)
  11. Johansson KA, Pedersen KB, Andersson AK; HIV testing of pregnant women: an ethical analysis. Dev World Bioeth. 2011 Dec;11(3):109-19. doi: 10.1111/j.1471-8847.2011.00304.x. Epub 2011 Jul 25.
  12. Commissioning HIV Testing Services; National Aids Trust, 2013
  13. HIV testing guidelines for children of HIV positive parents and/or siblings in the UK and Ireland; Children's HIV Association (CHIVA), January 2014
  14. Don't forget the children, Children's HIV Association (CHIVA), 2009
  15. Has Jacob Zuma hurt the fight against AIDS more than Thabo Mbeki?; Africa Check, 2014
  16. Rush J; Vatican considers historic easing stance on contraception and marriage as it finally concedes ordinary Catholics don't follow the rules, 2014.
  17. Nianias H; Pope Francis defends Catholic church stance on contraception during Philippines tour, 2015
  18. The case for HIV testing; Medical Foundation for HIV and Sexual Health (MEDFASH), 2015

Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. EMIS has used all reasonable care in compiling the information but make no warranty as to its accuracy. Consult a doctor or other health care professional for diagnosis and treatment of medical conditions. For details see our conditions.

Original Author:
Dr Richard Draper
Current Version:
Peer Reviewer:
Dr John Cox
Document ID:
2266 (v26)
Last Checked:
07/04/2015
Next Review:
05/04/2020