Abstract
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.
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Acknowledgements
We want to thank the participants of the Positive Brain Health Now cohort study. The project was approved by the Research Ethics Board of the McGill University Health Center Research Institute (REB 2104-1049) and each of the participating institutions.
Funding
This work was supported by a Canadian Institutes of Health Research (CIHR) Team Grant (TCO-125272).
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Sorayya Askari declares she has no conflict of interest. Nancy Mayo declares she has no conflict of interest. Marie-Josée Brouillette declares she has no conflict of interest. Lesley Fellows declares she has no conflict of interest.
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.
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Askari, S., Fellows, L.K., Brouillette, MJ. et al. Development and validation of a voice-of-the-patient measure of cognitive concerns experienced by people living with HIV. Qual Life Res 30, 921–930 (2021). https://doi.org/10.1007/s11136-020-02679-z
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DOI: https://doi.org/10.1007/s11136-020-02679-z