Late Diagnosis of HIV: An Updated Consensus Definition

Abstract and Introduction

Abstract

Introduction: In recent years, HIV testing frequency has increased, resulting in more people being diagnosed during seroconversion with a temporarily low CD4 count. Using the current consensus definition of late HIV presentation ('presenting for care with a CD4 count < 350 cells/μL or an AIDS-defining event, regardless of CD4 count') these individuals would be incorrectly assigned as being diagnosed late.

Methods: In spring 2022, a European expert group convened to revise the current late HIV presentation consensus definition. A survey on data availability to apply this revised definition was sent to nominated European focal points responsible for HIV surveillance (n = 53).

Results: Experts agreed that the updated definition should refer to late HIV diagnosis rather than presentation and include the following addition: People with evidence of recent infection should be reclassified as 'not late', with evidence of recent infection considered hierarchically. The individual must have: (i) laboratory evidence of recent infection; (ii) a last negative HIV test within 12 months of diagnosis; or (iii) clinical evidence of acute infection. People with evidence of being previously diagnosed abroad should be excluded. A total of 18 countries responded to the survey; 83% reported capturing CD4 count and/or AIDS at diagnosis through national surveillance, 67% captured last negative test and/or previous HIV diagnosis, 61% captured seroconversion illness at diagnosis and 28% captured incident antibody results.

Conclusions: Accurate data on late diagnosis are important to describe the effects of testing programmes. Reclassification of individuals with recent infection will help to better identify populations most at risk of poor HIV outcomes and areas for intervention.

Introduction

Late HIV diagnosis is associated with poor outcomes, an increased risk of ongoing HIV transmission and high healthcare costs.^[1,2] As such, late diagnosis remains a key public health metric in assessing the success of HIV testing programmes. In 2010, a consensus statement was published in which late presentation of HIV was defined as presenting for HIV care having a CD4 count < 350 cells/μL or with an AIDS-defining event.^[3] This definition was endorsed by the European Centre for Disease Prevention and Control (ECDC) and the World Health Organization (WHO) Regional Office for Europe and has been used across Europe for clinical research and public health monitoring for more than 10 years. Completeness of HIV surveillance data on CD4 count at diagnosis is now high for most countries reporting to the ECDC and WHO.^[4]

In recent years, testing for HIV has expanded and frequency has increased across some populations and regions, particularly in relation to the roll-out of pre-exposure prophylaxis (PrEP) programmes. This has resulted in an increasing number of people, particularly men who have sex with men (MSM), being diagnosed with HIV during seroconversion, when their CD4 count may be temporarily low, (known as the 'seroconversion effect').^[5,6] Using the current definition of late HIV presentation, these individuals are incorrectly assigned as being diagnosed late. This issue of overestimation has already been raised by research groups in Belgium,^[7] Sweden^[8] and the UK.^[9] This has led to correction factors being applied to the late diagnosis rate of specific subgroups. The magnitude of these correction factors depends on the reclassification criteria, population, country, and study period, but was estimated to be as high as 9% in Belgium.^[7]

Therefore, a working group established under the EuroTEST Initiative, with the support of the ECDC, WHO Regional Office for Europe and European AIDS Clinical Society (EACS), decided to revisit this definition, reviewing the feasibility of incorporating data on markers of recent infection to enable better distinction between people diagnosed with HIV late and people recently acquiring HIV.

Authors and Disclosures

Table 1. Data availability to monitor the revised definition of late HIV diagnosis at a national level: European countries, 2022 ( n = 18 countries)
Countries	Markers to calculate revised late HIV diagnosis figures
CD4 at diagnosis	AIDS illness at diagnosis	Incident HIV antibody test results	Seroconversion illness at diagnosis	Last negative test	Previous HIV diagnosis
Albania	No	No	No	Yes	No	Yes
Belgium	Yes	Yes	No	Yes	Yes	Yes
Denmark	Yes	Yes	No	Yes	Yes	Yes
France	Yes	Yes	Yes	Yes	Yes	Yes
Georgia	Yes	Yes	No	No	No	Yes
Germany	Yes	Yes	Yes	Yes	Yes	No
Greece	Yes	Yes	No	Yes	Yes	Yes
Ireland	Yes	Yes	Yes	Yes	Yes	Yes
Italy	Yes	Yes	No	Yes	Yes	Yes
Liechtenstein	No	No	No	No	No	No
Luxembourg	Yes	No	No	No	Yes	Yes
Malta	No	Yes	No	No	No	No
The Netherlands	Yes	Yes	No	Yes	Yes	Yes
Republic of Serbia	Yes	Yes	No	Yes	Yes	Yes
Slovakia	Yes	Yes	Yes	No	No	No
Spain	Yes	Yes	No	No	No	No
Sweden	Yes	Yes	No	No	Yes	No
UK	Yes	Yes	Yes	Yes	Yes	Yes

Sara Croxford¹, Annemarie Rinder Stengaard², Johanna Brännström^3–5, Lauren Combs², Nikos Dedes^4,6, Enrico Girardi⁷, Sophie Grabar⁸, Ole Kirk^2,9, Giorgi Kuchukhidze¹⁰, Jeffrey V. Lazarus^4,11, Teymur Noori¹², Anastasia Pharris¹², Dorthe Raben², Jürgen K. Rockstroh^4,13,14, Daniel Simões^4,15,16, Ann K. Sullivan^1,4,13,17, Dominique Van Beckhoven¹⁸ and Valerie C. Delpech^1,4, The EuroTEST HIV Late Diagnosis Definition Working Group

¹UK Health Security Agency, London, UK
²Centre of Excellence for Health, Immunity and Infections - CHIP, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark
³Institution of Medicine, Karolinska Institute, Karolinska University Hospital Huddinge, Stockholm, Sweden
⁴EuroTEST Steering Committee, Copenhagen, Denmark
⁵Department of Infectious Diseases, Venhälsan, Södersjukhuset, Stockholm, Sweden
⁶European AIDS Treatment Group, Brussels, Belgium
⁷National Institute for Infectious Diseases "Lazzaro Spallanzani" IRCCS, Rome, Italy
⁸Sorbonne Université, INSERM, Institut Pierre Louis d'épidémiologie et de Santé Publique, Paris, France
⁹Department of Infectious Diseases, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark
¹⁰World Health Organization Regional Office for Europe, Copenhagen, Denmark
¹¹ISGlobal, Barcelona Institute for Global Health, Hospital Clínic - University of Barcelona, Barcelona, Spain
¹²European Centre for Disease Prevention and Control, Stockholm, Sweden
¹³European AIDS Clinical Society, Brussels, Belgium
¹⁴University Hospital Bonn, Bonn, Germany
¹⁵EPIUnit–Instituto de Saúde Pública, Universidade do Porto, Porto, Portugal
¹⁶Coalition PLUS, Paris, France
¹⁷Directorate of HIV and Sexual Health, Chelsea and Westminster Hospital NHS Foundation Trust, London, UK
¹⁸Department of Epidemiology and Public Health, Sciensano, Brussels, Belgium

Correspondence
Annemarie Rinder Stengaard, Centre of Excellence for Health, Immunity and Infections - CHIP, Rigshospitalet, University of Copenhagen, DK-2100, Copenhagen, Denmark. Email: annemarie.rinder.stengaard@regionh.dk

Author Contributions
All authors were involved in the development of the survey on late HIV diagnosis and contributed important intellectual content to this manuscript. All authors commented on the manuscript and approved the final draft. SC was responsible for creating the survey and carried out data analysis with LC and ARS. SC also drafted the manuscript, incorporated author comments, and was responsible for the final draft to be published. LC created the survey in REDCap. ARS and DR were responsible for convening the expert group on behalf of EuroTEST. VCD and DR contributed to the study conception. AKS, DVB, GK, VCD, AP, SC and TN provided public health and surveillance expertise; AKS, SG, OK, EG and JB provided clinical input. DS and ND provided a community perspective.

Conflict of Interest
SC, ARS, LC, JVL, JB, ND, SG, GK, AP, TN, DR, DS, AKS, DVB and VCD report no conflicts of interest to disclose. JKR reports honoraria for consulting or speaking at educational events from Abivax, Boehringer, Galapagos, Gilead, Janssen, Merck, Theratechnologies and ViiV, outside the submitted work. EG received grant support from Gilead Sciences and Mylan, and speaker's honoraria from Gilead Sciences, outside the submitted work. OK reports a research grant from Gilead, and non-financial support from Merck, outside the submitted work.

Late Diagnosis of HIV: An Updated Consensus Definition

Abstract and Introduction

Abstract

Introduction

Tables

References

Authors and Disclosures

Authors and Disclosures

Email This

Feedback