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

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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).

Author information

Authors and Affiliations

  1. School of Occupational Therapy, Dalhousie University, Halifax, NS, Canada

    Sorayya Askari

  2. Department of Neurology and Neurosurgery, Faculty of Medicine, McGill University, Montreal, QC, Canada

    Lesley K. Fellows

  3. Department of Psychiatry, Faculty of Medicine, McGill University, Montreal, QC, Canada

    Marie-Josée Brouillette

  4. School of Physical and Occupational Therapy, Faculty of Medicine, McGill University, Montreal, QC, Canada

    Nancy E. Mayo

  5. Division of Clinical Epidemiology and Center for Outcomes Research and Evaluation (CORE), McGill University Health Center – Research Institute, 5252 de Maisonneuve, Office 2B.43, Montreal, QC, H4A 3S5, Canada

    Nancy E. Mayo

Authors
  1. Sorayya Askari
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  2. Lesley K. Fellows
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  3. Marie-Josée Brouillette
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  4. Nancy E. Mayo
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Corresponding author

Correspondence to Nancy E. Mayo.

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Conflict of interest

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.

Ethical approval

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

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