This study aimed to further the development and validation of a questionnaire to measure cognitive problems experienced by people living with HIV, called the Communicating Cognitive Concerns Questionnaire (C3Q). The researchers tested 48 items identified in a previous study in groups of people with and without HIV, and identified 18 non-overlapping items that represent the difficulties that are experienced. This study also showed that the items of the C3Q had similar levels of difficulty both for HIV+ people and controls. The C3Q covers various aspects of cognition like memory, concentration, and language. It was found to be associated with mental health, work productivity, and other self-report outcomes. While it does not strongly correlate with cognitive test performance, it reflects the real-life concerns of individuals. The questionnaire can help healthcare providers understand and address cognitive challenges in people with HIV, ultimately improving their quality of life.



People living with HIV may experience some degree of mild cognitive impairment. They are best placed to report on their cognitive symptoms, but no HIV-specific questionnaire exists to elicit these concerns. This study aimed to validate a set of items to form a measure


48 items were tested on an initial sample of 204 people with HIV. Rasch analysis was used to identify those that fit a hierarchical continuum. The hierarchy was validated on a new sample of 703 people with HIV and a sample of 484 people without HIV.


18 items fit the model and formed the Communicating Cognitive Concerns Questionnaire (C3Q). The items spanned the full range of cognitive ability, distinguished between people working and not working, and correlated with other self-report outcomes such as mental health (0.56) and work productivity (0.60), although showed a low correlation with cognitive test performance.


The C3Q is the first questionnaire specifically developed for use among people with HIV. While not strongly associated with cognitive test performance, it reflects real-life concerns of people and is associated with mood, work, and work productivity. It is a needed step in assessing cognition in this population.


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