Cognitive impairment is when a person has trouble remembering, learning new things, concentrating, or making decisions that affect their everyday life. HIV associated cognitive impairments can be caused by a myriad of factors such as the virus itself, ART or opportunistic infections. The most frequently used criteria for cognitive impairment in people with HIV are the HIV–associated neurocognitive disorders (HAND) criteria, developed in 2007 by a working group formed by the US National Institute of Mental Health. The HAND criteria was initially only intended to be used in research, but is now widely used to refer to clinical burden of cognitive impairments in people living with HIV in diverse settings all around the world.

The HAND criteria has consistently over-estimated the disease burden and can no longer be considered appropriate for the modern era of effective ART. Nightingale et al. have three criticisms of the use of the HAND criteria. Firstly, the statistical approach results in a very high false classification rate– about 20% of cognitively unimpaired HIV-negative people are defined as having cognitive impairment using the HAND criteria. Secondly, the cognitive test is strongly influenced by complex educational, cultural, and socioeconomic factors which are not being taken into consideration. Thirdly, in the modern era of effective ART, the cognitive impairment in people with HIV is frequently multifactorial and hence not synonymous with the direct effect of HIV on the brain, and not best described as being HIV-associated as the HAND criteria would imply.

It is irresponsible to use a criteria that overestimates cognitive impairment in people living with HIV, as this population already struggles with the impact of fear, stigma and discrimination– which misrepresented statistics is bound to worsen. Additionally, the use of a tool with low diagnostic precision hampers clinical trials for cognitive impairment and biomarker discovery.

In the face of this, the International HIV-Cognition Working Group (IHCW) was founded. The globally represented group consists of members across a range of disciplines (neurology, psychiatry, neuropsychology, and HIV and infectious diseases), from low-, middle- and high income countries, and involves representatives from the community of people living with HIV. The IHCW has been working towards a new approach intended to better represent the changing profile of cognitive impairment in people with HIV in diverse global settings and provide a clearer framework of classification for clinical management and research studies.

This new approach is crucial so that people with HIV in diverse global settings can better understand their risk of cognitive impairment and how to protect their brain health as they age.

Article adapted by Morgan Watson from a comment in the Lancet by Sam Nightingale, Paola Cinque, John A Joska, Richard W Price, Jonathan Underwood, on behalf of the International HIV-Cognition Working Group