Development and validation of a voice-of-the-patient measure of cognitive concerns experienced by people living with HIV

Purpose 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 Methods 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. Results 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. Conclusion 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.