Investigating late HIV diagnoses as serious incidents may spur change across the health system

Investigating cases of very late HIV diagnosis through the NHS’ serious incident reporting process allows identification of the reasons for late diagnosis and provides an impetus for initiatives to address them, public health officials and clinicians report in the March issue of the Journal of Public Health.

In 2015 in the UK, 39% of adults were diagnosed with HIV infection at a late stage (below 350 CD4 cells/mm3) and 21% at a very late stage (below 200 CD4 cells/mm3). Late diagnosis of HIV is associated with onward HIV transmission, increased hospitalisation, more expensive medical care and decreased life expectancy.

While previous research has identified demographic factors associated with late diagnosis and strategies to reduce late diagnosis, there has been little research on how to get the late diagnosis of HIV to be considered at a strategic level and how to trigger appropriate action at the local level.


CD4 cells

The primary white blood cells of the immune system, which signal to other immune system cells how and when to fight infections. HIV preferentially infects and destroys CD4 cells, which are also known as CD4+ T cells or T helper cells.


Refers to the mouth, for example a medicine taken by mouth.


Small scrapes, sores or tears in tissue. Lesions in the vagina or rectum can be cellular entry points for HIV.


A common yeast infection of moist areas of the body, caused by the fungi of the candida family such as Candida albicans. Most common in the vagina, where it is known as thrush, but also occurs in the mouth and skin folds.


A doctor, nurse or other healthcare professional who is active in looking after patients.

The National Health Service (NHS) has a serious incident framework which aims to ensure that serious adverse events are identified, investigated and learnt from so as to prevent similar incidents happening again. The focus of the process is not on apportioning blame, but on identifying the root causes of an incident.

Rather than considering lapses in one particular service, serious incident reporting considers the entire patient pathway. The process facilitates consideration of the issue at a senior level within health organisations and by commissioners.

The authors therefore reported as serious incidents cases of very late diagnosis (below 200 CD4 cells/mm3) that occurred in 2011 and 2012 in NHS Bournemouth & Poole and NHS Bristol. By submitting cases in batches, they facilitated comparison and identification of patterns.

The review of cases included a review of medical records, with particular attention given to demographic characteristics, clinical indicator conditions which may be caused by HIV infection or are common in people living with HIV, risk factors, and prior visits to primary or secondary care. Further information was requested from the GP or clinician who had previously treated the patient.

During the period of the audit, there was a total of 102 new HIV diagnoses, of which 33 occurred very late and were examined in detail. The age of people diagnosed very late ranged from 30 to 67 years, and two-thirds were male. While just over half were white British, individuals of black African and eastern European ethnicities were over-represented compared to the background population.

All but three patients had at least one risk factor for HIV, and 13 had two or more risk factors. These included having an HIV-positive partner (11 people), men who have sex with men (11), coming from a high-prevalence country (7) and coming from sub-Saharan Africa (5). While risk factors were often recorded in medical records, they tended not to be considered alongside symptoms as part of a more holistic diagnosis that would have led to HIV testing.

Most people had attended primary care several times in the year before diagnosis, including one person who attended eleven times. There was no evidence that patients had been offered and had refused HIV tests. Seven in ten people had had clinical indicator conditions, including recurrent mouth ulcers, weight loss, skin lesions, pneumocystis pneumonia, tuberculosis, shingles, chronic diarrhoea, unexplained blood disorders, swollen lymph nodes, oral candidiasis and sexually transmitted infections.

The authors provide an example of an individual with multiple missed opportunities for testing. The patient registered with a GP practice in 2010, was diagnosed with tuberculosis later that year, and then re-presented to primary care in February 2011 with a persistent cough, loin pain and night sweats. The patient was admitted to hospital in March 2011 with generalised abdominal pain but was not diagnosed with HIV until March 2012.

When GPs and other clinicians were contacted for the review, their knowledge of clinical indicator conditions was assessed, they were asked what steps they were taking to increase HIV testing, and whether support or education was required. At the end of each review, GPs and clinicians were written to by an HIV or GUM consultant, detailing the results of the root cause analysis, containing information and advice on recognising clinical indicator conditions.

Action plans for increasing awareness across the health sector were developed. Whereas the missed opportunities for testing in Bournemouth & Poole had occurred both in primary and secondary care, problems in Bristol were concentrated in primary care, so the interventions there focused on that sector.

GPs attended in-house education during practice meetings and education days; a study day was held for practice nurses and GPs during which the audit data and issues relating to very late diagnosis were presented; online materials and presentation slides were made available, and programmes to encourage HIV testing for individuals from high-prevalence countries were launched.

In secondary care, a campaign increased awareness of specific clinical indicator conditions within the Emergency Department; hospital policies on testing patients with clinical indicator conditions were changed and posters displayed in all departments; educational sessions with feedback of laboratory HIV positivity rates were provided; and the Royal College of Emergency Medicine was successfully lobbied to change HIV testing recommendations.

The project influenced the sexual health commissioning intention strategy and increased testing was commissioned in termination of pregnancy services, sexual health services and community sites.

The authors say they have seen small increases in the number of tests ordered after the project, and a significant fall in late diagnosis in Bournemouth & Poole (from 50% to 32%).

“SIR [serious incident reporting] provides a mechanism to investigate very late diagnosis and use the information to influence practice in PC [primary care] and other specialties, and could change testing strategies across the health community,” the authors conclude.

NICE guidance

National Institute for Health and Care Excellence (NICE) guidance already recommends HIV testing in a wide range of situations in primary and secondary care. In line with this, NICE this week published draft quality standards which set out the priority areas for quality improvement in relation to HIV testing. They are now open for public consultation. 

NICE recommends that adults and young people in extremely high prevalence areas are offered an HIV test when admitted to hospital or attending an emergency department. There are 20 local authority areas with extremely high prevalence of HIV (diagnosed HIV prevalence of 5 or more per 1000 people aged 15 to 59 years) including Manchester, Brighton and Hove and 18 London boroughs, with total populations of 3.7 million people.

NICE also recommends that adults and young people in high or extremely high prevalence areas are offered an HIV test by their GP when registering or when having a blood test if they have not had an HIV test in the last 12 months. There are 54 local authority areas where HIV rates are classed as high (diagnosed HIV prevalence of 2 or more per 1000 people aged 15 to 59 years), including Leeds, Birmingham and Newcastle, covering around 7.9 million people.

These draft quality standards are open for public consultation until Friday 21 April.


Womack J et al. A novel strategy to reduce very late HIV diagnosis in high-prevalence areas in South-West England: serious incident audit. Journal of Public Health 39: 170-176, 2017. (Full text freely available).