Development and validation of a voice-of-the-patient measure of cognitive concerns experienced by people living with HIV
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Development and validation of a voice‑of‑the‑patient measure of cognitive concerns experienced by people living with HIV Sorayya Askari1 · Lesley K. Fellows2 · Marie‑Josée Brouillette3 · Nancy E. Mayo4,5 Accepted: 10 October 2020 © Springer Nature Switzerland AG 2020
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 selfreport 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. Keywords Cognition · Measurement · Validation · Rasch analysis · Patient-reported outcomes
Introduction
Electronic supplementary material The online version of this article (https://doi.org/10.1007/s11136-020-02679-z) contains supplementary material, which is available to authorized users. * Nancy E. Mayo [email protected] 1
School of Occupational Therapy, Dalhousie University, Halifax, NS, Canada
2
Department of Neurology and Neurosurgery, Faculty of Medicine, McGill University, Montreal, QC, Canada
3
Department of Psychiatry, Faculty of Medicine, McGill University, Montreal, QC, Canada
4
School of Physical and Occupational Therapy, Faculty of Medicine, McGill University, Montreal, QC, Canada
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
Between 20 and 70% of people aging with HIV report difficulties with one or more aspects of cognition even with wellcontrolled infection [1]. Any decline in cognitive capacity can affect everyday life, including producing difficulties at work, problems with household management, and poor medication adherence [2–4]. These in turn affect the quality of life [4]. Since the introduction of combined antiretroviral treatment (cART), the spectrum of HIV-associated neurocognitive disorders (HAND) has changed, with a substantial reduction in dementia (from approximately 20 to 5% of patients) but a higher p
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