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The Patient Generated Index (PGI) as an early-warning system for predicting brain health challenges: a prospective cohort study for people living with Human Immunodeficiency Virus (HIV)

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Abstract

Purpose

In research people are often asked to fill out questionnaires about their health and functioning and some of the questions refer to serious health concerns. Typically, these concerns are not identified until the statistician analyses the data. An alternative is to use an individualized measure, the Patient Generated Index (PGI) where people are asked to self-nominate areas of concern which can then be dealt with in real-time. This study estimates the extent to which self-nominated areas of concern related to mood, anxiety and cognition predict the presence or occurrence of brain health outcomes such as depression, anxiety, psychological distress, or cognitive impairment among people aging with HIV at study entry and for successive assessments over 27 months.

Methods

The data comes from participants enrolled in the Positive Brain Health Now (+ BHN) cohort (n = 856). We analyzed the self-nominated areas that participants wrote on the PGI and classified them into seven sentiment groups according to the type of sentiment expressed: emotional, interpersonal, anxiety, depressogenic, somatic, cognitive and positive sentiments. Tokenization was used to convert qualitative data into quantifiable tokens. A longitudinal design was used to link these sentiment groups to the presence or emergence of brain health outcomes as assessed using standardized measures of these constructs: the Hospital Anxiety and Depression Scale (HADS), the Mental Health Index (MHI) of the RAND-36, the Communicating Cognitive Concerns Questionnaire (C3Q) and the Brief Cognitive Ability Measure (B-CAM). Logistic regressions were used to estimate the goodness of fit of each model using the c-statistic.

Results

Emotional sentiments predicted all of the brain health outcomes at all visits with adjusted odds ratios (OR) ranging from 1.61 to 2.00 and c-statistics > 0.73 (good to excellent prediction). Nominating an anxiety sentiment was specific to predicting anxiety and psychological distress (OR 1.65 & 1.52); nominating a cognitive concern was specific to predicting self-reported cognitive ability (OR 4.78). Positive sentiments were predictive of good cognitive function (OR 0.36) and protective of depressive symptoms (OR 0.55).

Conclusions

This study indicates the value of using this semi-qualitative approach as an early-warning system in predicting brain health outcomes.

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Data availability

The data that support the findings of this study are available from the corresponding author, [MH], upon reasonable request.

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Acknowledgements

We would like to thank all the study participants who agreed and took the time to participate in the Positive Brain Health Now (+BHN) cohort. We would also like to thank Susan Scott and Lyne Nadeau for their assistance with database development and management.

Funding

This work was supported by a Canadian Institute of Health Research (CIHR) Team Grant [TCO-125272] and a grant from CIHR HIV Clinical Trials Network (CTN 273). The funders had no role in the data collection, design, analysis and interpretation in this study.

Author information

Authors and Affiliations

  1. Division of Experimental Medicine, Faculty of Medicine and Health Sciences, McGill University, 5252 de Maisonneuve, Montreal, QC, H4A 3S5, Canada

    Muhammad Mustafa Humayun

  2. Center for Outcome Research and Evaluation (CORE), Research Institute of the McGill University Health Center, Montreal, QC, Canada

    Muhammad Mustafa Humayun & Nancy E. Mayo

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

    Marie-Josée Brouillette

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

    Lesley K. Fellows

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

    Nancy E. Mayo

Authors
  1. Muhammad Mustafa Humayun
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  2. Marie-Josée Brouillette
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  3. Lesley K. Fellows
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  4. Nancy E. Mayo
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Contributions

This manuscript is the work of MMH and is part of his thesis with editing and feedback from Professor. NEM Statistical analysis was also conducted by the masters candidate. As supervisor, Prof. NEM oversaw all aspects of the thesis and provided expertise regarding research methodology. Dr. M-JB and Dr. LKF were the primary investigators of the + BHN study and provided professional feedback as part of the thesis committee.

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Correspondence to Muhammad Mustafa Humayun.

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Humayun, M.M., Brouillette, MJ., Fellows, L.K. et al. The Patient Generated Index (PGI) as an early-warning system for predicting brain health challenges: a prospective cohort study for people living with Human Immunodeficiency Virus (HIV). Qual Life Res 32, 3439–3452 (2023). https://doi.org/10.1007/s11136-023-03475-1

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