A re-audit of individuals with a late diagnosis of HIV in 2016 and 2019 in Greater Manchester

Abstract

Background

New late HIV diagnosis (CD4 count <350cells/mm³) are higher in North West England compared to the UK average. A Greater Manchester-wide audit into individuals diagnosed with late or very late HIV was conducted in 2016 and re-audited in 2019. Our aim was to gain intelligence into key demographics of late diagnosed individuals across Greater Manchester, review opportunities for earlier diagnosis and determine if key recommendations from the 2016 audit were followed.

Methods

Individuals were identified from locally kept data or HIV and AIDS Reporting System (HARS) data. A retrospective case note review was performed for each patient using data from local notes, General Practice summary of care records and relevant clinical letters. Data was collected for 2019 and compared to 2016 results.

Results

In 2016, nine departments contributed data and 104 individuals were identified as having been diagnosed late. In 2019, seven departments contributed data and 65 individuals were identified as having been diagnosed late. In both years, a greater proportion of males diagnosed late were White British and for females Black African. A greater proportion of late diagnosis occurred in men who have sex with men (MSM) and in heterosexual females. In 2019, a greater proportion of patients had an AIDS-defining illness at time of diagnosis. Whilst in 2016, most patients were asymptomatic. Over one third of patients had a clinical indicator disease in their past medical history, which is an increase in proportion from 2016. The proportion of cases where clinicians felt that there had been probable missed opportunities for earlier diagnosis also increased in 2019.

Conclusions

There are continued missed opportunities for earlier diagnosis. We recommend targeted interventions for groups at higher risk of late presentation, education in primary/secondary care regarding clinical indicator conditions, a formal review process for all late diagnosed cases, communication with primary/secondary care if missed opportunities are identified and broader HIV testing especially in high prevalence areas.

Keywords

HIV Viral disease Diagnosis AIDS Viral

Introduction

The United Kingdom Public Health Outcomes Framework (PHOF) defines a late diagnosis of HIV as a CD4 cell count of <350 cells/mm³ within 91 days of diagnosis.¹ Very late HIV is considered a CD4 count of <200 cells/mm³.² Late HIV diagnosis is associated with a seven-fold increased risk of death, increased morbidity, increased risk of onward transmission and higher healthcare associated costs to the National Health Service (NHS).^1–5 In the UK, the proportion of newly diagnosed late HIV has increased from 35% in 2016 to 42% in 2020, although the overall number of cases has declined.¹ The proportion of late diagnoses are higher in North West England than the UK average – 44% of all new diagnosis from 2017-2019.⁶

A Greater Manchester-wide audit into individuals diagnosed with late or very late HIV was conducted in 2016. The aim of our 2019 re-audit was to gain further intelligence into demographics of late diagnosed individuals across Greater Manchester, review opportunities for earlier diagnosis and determine whether key recommendations from the 2016 audit were followed. Recommendations from the 2016 audit were for improved efforts to increase testing for Black and Minority Ethnic Groups (BAME) and men who have sex with men (MSM), education in primary/secondary care for patients presenting with clinical indicator illnesses, and communication between specialist HIV services and primary/secondary care regarding late diagnosed individuals. A letter signed by the local Department for Public Health and the Medical Director of the Clinical Commissioning Groups (CCG) was developed with the aim to send to GPs when one of their patients had a late diagnosis.

Methods

Clinicians working in Sexual Health, HIV and Infectious Diseases services across Greater Manchester were asked to participate in data collection. Individuals diagnosed late were identified from locally kept data or HIV and AIDS Reporting System (HARS) data. Retrospective case note reviews were performed using local clinical notes, General Practice summary of care records and clinical letters. Data were collected for 2019 and compared to 2016 results.

Results

In total, 12 departments across Greater Manchester were asked to collect data. In 2016, nine participated in data collection and in 2019, seven participated.

In 2016, 104 individuals were identified as having been diagnosed late and in 2019, 65 individuals were identified.

Demographics

Demography of cases identified

Demographic characteristics of cases identified in the 2016 and 2019 audits are summarised in Table 1.

Table 1.

key demographics of individuals with a late diagnosis of HIV in Greater Manchester.

	2016		2019
Number of patients	104		65
Gender:
Male	77.9%(n = 81)		76.9%(n = 50)
Female	22.1%(n = 23)		23.1%(n = 15)
Median age:
Male	37		35
Female	38		41
Orientation:	Male	Female	Male	Female
Homosexual	53.1%(n = 43)	0.0%(n = 0)	56.0%(n = 28)	0.0%(n = 0)
Heterosexual	38.3%(n = 31)	95.7%(n = 22)	38.0%(n = 19)	100.0%(n = 15)
Bisexual	1.2%(n = 1)	0.0%(n = 0)	2.0%(n = 1)	0.0%(n = 0)
Undisclosed	7.4%(n = 6)	4.3%(n = 1)	4.0%(n = 2)	0.0%(n = 0)
Ethnicity by sex:	Male	Female	Male	Female
White British	58.0%(n = 47)	30.4%(n = 7)	60.0%(n = 30)	20.0%(n = 3)
Black/Black British:African	14.8%(n = 12)	47.8%(n = 11)	10.0%(n = 5)	60.0%(n = 9)
Black/Black British:Caribbean	3.7%(n = 3)	8.7%(n = 2)	4.0%(n = 2)	0.0%(n = 0)
Asian/Asian British:Indian	3.7%(n = 3)	0.0%(n = 0)	0.0%(n = 0)	0.0%(n = 0)
Asian/Asian British:Pakistani	1.2%(n = 1)	0.0%(n = 0)	4.0%(n = 2)	6.7%(n = 1)
Other Asian background	4.9%(n = 4)	0.0%(n = 0)	8.0%(n = 4)	6.7%(n = 1)
Other White background	7.4%(n = 6)	4.3%(n = 1)	10.0%(n = 5)	0.0%(n = 0)
Other Black background	2.5%(n = 2)	0.0%(n = 0)	2.0%(n = 1)	6.7%(n = 1)
Other	3.7%(n = 3)	4.3%(n = 1)	0.0%(n = 0)	0.0%(n = 0)
Not stated	0.0%(n = 0)	4.3%(n = 1)	2.0%(n = 1)	0.0%(n = 0)
Born outside the UK	40.4%(n = 42)		27.7%(n = 18)
Median CD4 count (cells/mm ³ ):
Late diagnosis	216		172
Very late diagnosis	83		102
Route of transmission:
Sex between men and women	47.1%(n = 49)		44.6%(n = 29)
Sex between men	44.2%(n = 46)		46.2%(n = 30)
Other	8.7%(n = 9)		9.2%(n = 6)

The clinical presentations of cases are summarised in Table 2.

Table 2.

Clinical presentation of late diagnosed individuals at diagnosis.

	2016	2019
Asymptomatic	36.5%(n = 38)	12.3%(n = 8)
AIDS-defining illness^7-9	26.0%(n = 27)	33.8%(n = 22)
Clinical indicator illness^7,8	24.0%(n = 25)	30.8%(n = 20)
Other	12.5%(n = 13)	20.0%(n = 13)
Not recorded	0.96%(n = 1)	3.1%(n = 2)

Reported time since last HIV test

In 2019, 12.3% (n = 8) had never had a previous HIV test and 62.5% (n = 5) of these individuals were defined as having very late HIV. This is a reduction from 2016 when 38.5% (n = 40) had never had a previous HIV test. Approximately one tenth of patients in 2019 (9.2%, n = 6), reported having had a HIV test in the preceding 12 months, however, three of these were thought to be actively seroconverting at the time of diagnosis.

Diagnosis setting

Individuals in 2019 were most frequently diagnosed during medical admission for inpatient care (35.6%, n = 37), which contrasts to 2016 when a greater proportion were diagnosed in a sexual health setting (64.1%, n = 42). Other settings included primary care, antenatal, outpatient or infectious diseases clinics and emergency departments

Earlier opportunities for diagnosis

For all individual cases, HIV clinicians were asked whether they thought that an HIV diagnosis could have been made earlier. This judgement was made based on clinician experience and knowledge of British HIV Association (BHIVA) and National Institute for Health and Care Excellence (NICE) guidelines for testing.^7,9 Of the 104 individuals in 2016, it was felt that the diagnosis could not have been made earlier in 58.7% (n = 61), could probably have been diagnosed earlier in 20.2% (n = 21), could possibly have been made earlier in 8.7% (n = 9) and was unclear/unknown in 12.5% (n = 31). Of the 65 individuals in 2019, it was felt that the diagnosis could not have been made earlier in 52.3% (n = 34), could probably have been made earlier 43.1% (n = 28), could possibly have been made earlier in 1.5% (n = 1) and was unclear/unknown in 3.1% (n = 2).

One of the recommendations of the 2016 audit was that all cases had a look-back exercise performed. We asked clinicians to review all 2019 cases to determine if this had occurred. In 2019, 56.9% (n = 37) had undergone a look-back exercise to establish if an opportunity for earlier diagnosis was missed. In 67.6% (n = 25) of these, a letter was sent to the GP to inform them of the late diagnosis and, if applicable, highlight opportunities for earlier testing. However, 13.5% (n = 5) did not have a letter sent because no missed opportunities were identified following the look-back exercise. Therefore, 18.9% (n = 7) who underwent a look back exercise, had missed opportunities identified and no communication with primary or secondary care.

Clinical indicator illnesses in past medical history

All records were reviewed for the presence of clinical indicator illnesses in an individual’s past medical history. Clinical indicator illnesses were present in 36.9% (n = 24) in 2019 and 23.1% (n = 24) in 2016. In 2019, median duration was 24 months (range 1 week to 8 years). In 2016, the median duration of illness prior to diagnosis was 10 months and 3 days (range 2 weeks to 2 years). Details of clinical indicator ilnnesses are provided in Charts 1 and 2.

Chart 1.

comparison of individuals with AIDS-defining illnesses at diagnosis.

Chart 2.

comparison of individuals with clinical indicator illnesses at diagnosis.

Clinicians reviewing the case notes were asked whether they felt the HIV diagnosis could have been made earlier for these cases where clinical indicator illnesses were present. In 2016, 45.8% (n = 11) had probable missed opportunities for earlier diagnosis, 12.5% (n = 3) had no missed opportunities, 33.3% (n = 8) cases it was unclear/unknown, and 28.3% (n = 2) individuals had been offered and declined HIV testing. Of the 24 cases in 2019, 83.3% (n = 20) had probable missed opportunities for diagnosis. In 16.7% (n = 4) of cases, there were no missed opportunities.

One of the recommendations of the 2016 audit was that all cases had a look-back exercise performed. In the 2019 audit, we reviewed whether look-back exercises had been performed for cases which had clinical indicator illnesses identified in their past medical history. Of the 24 cases in 2019, 70.8% (n = 17) had a look-back exercise performed and of these, 94.1% (n = 16) were identified as having a missed opportunity. In 81.3% (n = 13), a letter had been sent to the GP for a ‘lessons learnt’ exercise, yet 18.8% (n = 3) had a missed opportunity identified and no communication with primary/secondary care.

Discussion

Late HIV diagnosis is associated with increased morbidity and mortality.^1,2,3,4,5 UK Health Security Agency (UKHSA) 2021 statistics show that the proportion of late diagnosed individuals in the UK has fallen.¹ We found that the number of individuals diagnosed late with HIV has decreased in Greater Manchester, however, two centres did not return data in 2019. These centres contributed 11.5% of patients in 2016.

The 2016 audit recommended improved efforts to increase testing for at risk groups such as BAME and MSM, improved education in primary/secondary care for patients presenting with clinical indicator illnesses and communication between specialist HIV services and primary/secondary care regarding late diagnosed individuals. Public Health used information contained in our 2016 audit to lead discussions with local GPs and medical committees about the importance of earlier HIV diagnosis and provide education on missed opportunities. A letter signed by the local Department for Public Health and the Medical Director of the CCG was developed with the aim to send to GPs when one of their patients had a late diagnosis.

Our 2019 audit demonstrates that there are continued missed opportunities for earlier diagnosis. In 2019, a greater proportion of patients had an AIDS-defining illness at time of diagnosis, whilst in 2016 most patients were asymptomatic. Over one third of patients had a clinical indicator disease in their past medical history, which is an increase in proportion from 2016. The proportion of cases where clinicians felt that there had been probable missed opportunities for earlier diagnosis also increased in 2019. Thus, communication between HIV specialist services and primary/secondary care still needs to be improved. Just over half of cases had a look-back exercise performed. Of these cases, two-thirds had a letter sent to the GP for a lessons learnt exercise. BHIVA recommends a formal case review for all late HIV diagnoses¹⁰

UKHSA 2017 and 2019 data focusing on late diagnosis in the Northwest of England found that heterosexuals were more likely to be diagnosed late, and by ethnicity individuals from BAME groups were more likely to be diagnosed late.⁶ Our 2016 and 2019 audits have determined detailed demographics of late diagnosed individuals specifically in Greater Manchester. We identified that heterosexual females and homosexual males were more likely to be diagnosed late. For ethnicity, White British males and Black-African females had greater numbers of late diagnoses.

In 2019, a greater proportion of individuals diagnosed late were being diagnosed during inpatient medical admission, compared to 2016 when most patients were diagnosed in a sexual health clinic. This could reflect the success of routine testing in sexual health centres at diagnosing individuals at an earlier stage.

Our re-audit has highlighted key demographics of late diagnosed individuals in Greater Manchester and allowed us the opportunity to evaluate whether key recommendations aimed at reducing late diagnosis had been followed. Yet, there are some limitations to our work. Firstly, fewer sites contributed to data in 2019 and this may have impacted findings. Secondly, different clinicians collected data in the 2019 re-audit and we must allow for some variability in data collection and opinion on whether some diagnosis could have been made earlier. We asked clinicians to decide about whether a diagnosis could have been made earlier and categorise it into ‘possible’, ‘probable’ based on BHIVA’s 2021 proposed late diagnosis review protocol.¹¹ However, we acknowledge that this decision may be influenced by clinician knowledge of BHIVA and NICE guidelines for testing and their clinical experience – this is partly subjective and we acknowledge that clinician knowledge will vary. Finally, certain sites may have had less access to patient records, therefore, some data may have been omitted.

Our re-audit demonstrates that look-back exercises are being performed and communication with primary care has occurred for some cases. However, recommendations from the 2016 have been challenging to implement fully and this may be due to service-wide pressures and time constraints. Since our re-audit, we have introduced a formal review process for all late diagnoses which will involve every case being presented to the service during a dedicated meeting. In addition, many of our services have prompts on electronic records to alert clinicians to do a look-back exercise. As people continue to be diagnosed late and opportunities for earlier diagnosis missed, we cannot afford to be complacent and must continue, along with other regions and sexual health services, to work hard towards the aim of zero new transmissions of HIV by 2030.¹²

BHIVA recommends several strategies to increase HIV testing, so that we can diagnose people living with HIV who are not aware and prevent late diagnosis. HIV testing is recommended for groups at increased risk of exposure including MSM, people who inject drugs, sex workers, prisoners, transgender women and people from high-risk countries. Other groups that need to be targeted are those with clinical indicator illnesses, those attending antenatal clinics, termination of pregnancy services, addiction and substance misuse services, sexual partners of newly diagnosed HIV and people not previously tested who attend GP, hospital or emergency departments (ED) in areas of high HIV prevalence (such as Greater Manchester).⁷

Therefore, we recommend

➢ Targeted interventions for groups at higher risk of late diagnosis. These interventions include providing post-exposure prophylaxis (PEP) and pre-exposure prophylaxis (PrEP) to those eligible and increasing ease of HIV testing through self-sampling and community testing

➢ Broader HIV testing in higher prevalence areas, for example ED testing

➢ Education in primary/secondary care regarding clinical indicator conditions in order to improve awareness and need for testing in these scenarios

➢ Formal review processes for all late diagnoses so we can identify missed opportunities, learn and communicate with primary/secondary care regarding missed opportunities for earlier diagnosis

Footnotes

Acknowledgements

Dr Luke Cannon, Louise Carnes, Dr Anna Garner, Dr Benjamin Goorney, Dr Dominic Haigh, Dr Emily Rooney, Dr Chris Ward.

Declaration of conflicting interests

The author(s) 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.

ORCID iD

Emily Boardman

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