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26-10-2020 | Uitgave 3/2021

Quality of Life Research 3/2021

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

Quality of Life Research > Uitgave 3/2021
Sorayya Askari, Lesley K. Fellows, Marie-Josée Brouillette, Nancy E. Mayo
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The online version of this article (https://​doi.​org/​10.​1007/​s11136-020-02679-z) contains supplementary material, which is available to authorized users.

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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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