Members of the team at the British HIV Association Audit and Standards Committee share their insight into learning from late diagnosis to help reduce deaths.

National guidance from NICE and British HIV Association/British Association for Sexual Health and HIV/British Infection makes clear recommendations on HIV testing for primary and secondary care, but there remain an estimated 6,600 people living with undiagnosed HIV and every year 42% of people newly diagnosed are at an advanced stage of infection.

Late diagnosis is associated with a ten-fold increase in mortality in the first year, increased morbidity, less effective treatment responses and increased associated healthcare costs. Furthermore, undiagnosed infection means people may unknowingly risk transmitting HIV to their sexual partners.

Timely diagnosis and rapid initiation of antiretroviral therapy means that life expectancy for people living with HIV is now similar to that of the general population and once the blood viral load is undetectable, people living with HIV can no longer transmit HIV to their sexual partners.

Map of diagnosed HIV prevalence in England

Diagnosed HIV prevalence (per 1,000 population aged 15 to 59 years): local authorities in England, 2018. Credit: Public Health England, used with permission.

Photo credit: Used with permission of PHE.

Implementing testing

For all these reasons, and to meet the UK target of ending HIV transmission by 2030, it is imperative that HIV testing is implemented in line with current guidance. We know the majority of people find an offer of HIV testing acceptable and that 'opt-out' testing (see FAQs below) is the most effective way to achieve high overage of routine testing.

Making testing routinely available in areas of high HIV prevalence (>2/1,000) or testing routinely when a person presents with an HIV indicator condition (medical conditions, for example oral candidiasis or shingles, associated with undiagnosed HIV) addresses many of the barriers currently preventing more widespread testing, as neither requires a risk assessment and, in both strategies, testing is offered to all those attending the service or clinic or presenting with the condition.

Concerns about results governance (especially in some settings such as emergency departments) and delivering positive results can be mitigated by involving the local HIV service and including brief training, if required.  

Barriers to testing

Audits have shown that many people experience missed opportunities to test for HIV, and this occurs as frequently in primary as in secondary care. There are a number of individual (clinician), patient and institutional barriers to testing that continue to contribute to late HIV diagnosis.

The most common clinician-related barrier is failure to appreciate HIV risk, or to consider HIV as part of the differential diagnosis. Others include stigma, time pressures, clinicians not seeing it as their role to test, perceived need for pre-test counselling and unfamiliarity with test discussions.

Patients may be fearful of HIV status disclosure or may not perceive themselves to be at risk. Institutional barriers include lack of training around testing and lack of clarity about who funds the tests and who manages results.

Striving to create an environment in all healthcare settings where HIV testing is seen as part of routine care is vital to increase opportunities for earlier testing

Main advice points

There are clear guidelines for HIV testing in UK practice, but they are not always well implemented, leading to ongoing harm to patients and ongoing HIV transmission because of undiagnosed infection. Historically, patients or their families have not taken legal action because of stigma, but this is changing and there are litigation cases ongoing because of missed opportunities to diagnose HIV earlier.

Striving to create an environment in all healthcare settings where HIV testing is seen as part of routine care is vital to increase opportunities for earlier testing, and enables clinicians to become more comfortable requesting this test.

In primary care, prompt testing in indicator conditions is key and it should not be assumed that an HIV test has been done just because an individual has been seen by a hospital specialist. Testing routinely via opt-out, and increasing the frequency of testing, allows primary care clinicians to become comfortable with routinely offering the test, along with any other necessary blood tests.

In emergency departments, embedding routine, opt-out testing according to guidelines will mean offering a test to everyone undergoing venepuncture in areas of high and extremely high (>5/1,000) prevalence, and aiming to test everyone in areas of extremely high prevalence.

Where prevalence is lower, testing in indicator conditions (such as pneumonia, shingles, candidiasis, STIs - see here for a comprehensive list) requires staff training, perhaps supported by electronic prompts, and links with HIV services to ensure results are followed up. Large emergency departments undertaking routine testing have reported no effect on the ability to meet four hour targets.

In secondary care, routine testing in all settings, especially medical admission, needs to be prioritised as a high value healthcare intervention, saving costs on hospitalisation and investigations for people with undiagnosed HIV, or for those diagnosed late.

Incorporating HIV tests as part of routine care 'bundles' and 'order sets' may increase the frequency of testing by providing a visual reminder to clinicians. Patients tell us that they prefer to be offered a test as routine, rather than because of a personal characteristic or risk factor, and this further reduces the stigma of testing and increases the probability that the offer is accepted.

For all settings, links with HIV services can enhance education and awareness-raising, simultaneously helping to reduce the stigma encountered by people living with HIV accessing healthcare in the UK.

Any healthcare professional can consent for an HIV test. Furthermore, senior clinicians being seen to test routinely leads to the much-needed change in practice; for example, routine testing on admission to acute medicine where appropriate.

FAQs

When should I do an HIV test?

Specific guidance exists for when HIV tests are indicated (BHIVA 2020). Testing should be recommended:

  • to patients with risk factors for HIV
  • to patients with HIV indictor conditions
  • routinely when obtaining blood tests in areas of high prevalence
  • for all patients in areas with extremely high prevalence (see Figure 1).

Practitioners should consider HIV testing at every patient encounter.

How should I consent for an HIV test?

Patients should be made aware they will have an HIV test, and there are a number models through which testing can be organised.

Opt-out testing (the method successfully used in all antenatal services) is where a patient is made aware they will be tested for HIV unless they decline. This can be within the context of a number of other investigations, by a written leaflet, and so on, and consent is assumed if they don't object.

  • Example 1: patients attending an emergency department in a high prevalence area are given a leaflet, which explains that if they have a blood test it will include an HIV test unless they decline.
  • Example 2: explaining to a patient that the investigations and treatment planned include HIV testing as routine, as well as explaining briefly that this is always done in this situation (for example, for people with pneumonia in hospital) unless they decline.

Our experience is that the vast majority are happy to be tested.

How do I manage a positive result?

Healthcare practitioners have expressed concerns about the follow-up of HIV tests and may lack confidence in delivering a positive result. Both of these factors may present barriers to testing.

In our practice, we've found that close liaison and creation of robust pathways between the lab, the HIV service and the departments where testing takes place frequently allay these concerns.

  • Example: an arrangement where the lab promptly informs the HIV service of all new positive results allows the HIV service to support clinicians in delivering positive results and ensuring high quality information and support is given to the patient and clinician from the outset.
I now do a lot of consultations by phone/video. How should I manage HIV testing in this situation?

For remote consultations in most specialties, provision needs to be in place for blood tests and other investigations to follow. Consent (including via an opt-out approach) can be taken remotely, along with explanation of any other actions to be taken, and blood tests organised as per local practice.

For people with indicator conditions, we strongly recommend organising an HIV test even if other blood tests are not required - for example, a patient with shingles or glandular-fever like illness.

How do I improve awareness of HIV in my area of work?

There is an awareness gap among clinicians in the NHS which propagates the stigma associated with testing for this condition. Promoting HIV educational resources or including these as part of organisational training will help to increase knowledge and understanding.

Moreover, our observation is that once clinicians start offering HIV tests and realise that an assessment of risk factors or sexual history is not always needed, they become more comfortable with it and able to implement routinely.

Authors

  • Dr. David Chadwick, Infectious Diseases physician, Middlesbrough, UK
  • Dr. Clare van Halsema, Infectious Diseases physician, Manchester, UK
  • Dr. Ann Sullivan, HIV physician, London and Public Health England, UK
  • Dr. David Mummery, GP, London, UK
  • Dr. Sarah Rose, Acute Medicine physician, Manchester, UK

This page was correct at publication on 07/07/2021. Any guidance is intended as general guidance for members only. If you are a member and need specific advice relating to your own circumstances, please contact one of our advisers.