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A Randomized Prospective Survey Targeting Knowledge, Barriers, Facilitators and Readiness to Participation in Dementia Research

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Abstract

Background

While the U.S. National Institute on Aging has developed a strategy for recruitment of minority populations in dementia research, including increasing awareness and engagement, minority populations remain under-represented, and the evidence-base is limited. We tested a conceptually driven communication approach targeting barriers and facilitators to research participation vs. standard education.

Methods

In this 2-phase project, input from the minority advisory board of the Cleveland Alzheimer’s Disease Research Center informed development of 2 brief health communication videos which differentially focused on research barriers and facilitators (POWER) versus an education control (Phase 1). In Phase 2, a randomized prospective survey compared POWER vs. an active comparator control on pre/post video change in dementia knowledge, cumulative barriers, and facilitators to dementia research, and change in research readiness measured by the Transtheoretical behavior change model. Changes in outcomes were evaluated using two group by two time points repeated measure analysis of variance (RMANOVA) controlling for age, gender, race, and education.

Results

The pre-video sample (n=242) had mean age of 57.6 (SD17.2) years, mostly female (n=181, 74.8%), 42.6% non-white. The analyzable sample who completed both pre and post assessments comprised n=102 in the POWER and n=105 in the control group. Non-white participants made up 41.1% of the analyzable POWER (n=51) and 44.1% (n= 52) of controls. Adjusted for age, gender, race and education, controls had a greater increase in dementia knowledge (p=0.004). There was a significant reduction in barriers for POWER (p=.044) vs. control. There were no differences in research facilitators and research readiness between POWER vs. control. Among African Americans (n=59, 28.5% of the analyzable sample) there was a trend for improved dementia knowledge (p=.059) favoring control and in research readiness (p=.051), favoring POWER.

Conclusions

Targeting barriers and attitudes towards research could inform development of approaches with potential to improve dementia research participation across diverse communities.

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Funding

Funding Source: This project was supported by a grant from the Prentiss Foundation and support from University Hospitals of Cleveland. We certify that this work is novel. This research specifically adds to the literature on the engagement of under-represented groups in dementia research.

Author information

Authors and Affiliations

  1. Department of Psychiatry and of Neurology, Case Western Reserve University School of Medicine, Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, 10524 Euclid Avenue, Cleveland, Ohio, 44106, USA

    Martha Sajatovic

  2. College of Health and Human Sciences, Northern Illinois University, DeKalb, Illinois, USA

    L. K. Herrmann

  3. Department of Neurosurgery, University Hospitals Cleveland Medical Center, Cleveland, Ohio, USA

    C. Knebusch

  4. Department of Psychiatry, Case Western Reserve University School of Medicine, Cleveland, Ohio, USA

    K. Sarna

  5. Department of Neurology, University Hospitals of Cleveland, Case Western Reserve University School of Medicine, Cleveland, USA

    A. J. Lerner

  6. Department of Psychiatry, University Hospitals of Cleveland, Case Western Reserve University School of Medicine, Cleveland, USA

    E. Fuentes-Casiano

  7. Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, USA

    C. J. Burant

  8. The Geriatric, Research, Education, and Clinical Center, The Louis Stokes Cleveland VA Medical Center, Cleveland, USA

    C. J. Burant

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  1. Martha Sajatovic
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Contributions

Author Contribution: Martha Sajatovic: Led study concept and design, acquisition of subjects and data analysis, interpretation of data, and preparation of manuscript. Lynn Katherine Herrmann: Study concept and design, acquisition of subjects and data analysis, interpretation of data, and preparation of manuscript. Clare Knebusch: Acquisition of subjects, interpretation of data, and preparation of manuscript. Kaylee Sarna: Data analysis, interpretation of data, and preparation of manuscript. Alan J. Lerner: Preparation of manuscript. Edna Fuentes-Casiano: Acquisition of subjects, preparation of manuscript. Christopher J. Burant: Data analysis, interpretation of data, and preparation of manuscript.

Corresponding author

Correspondence to Martha Sajatovic.

Ethics declarations

Conflicts of Interest: Author M.S. has research grants from Otsuka and the International Society of Bipolar Disorders (ISBD). M.S. is a consultant to Alkermes, Otsuka, Sunovion, Janssen, Lundbeck, Teva, Clinical Education Alliance, Health Analytics and has received publication royalties from Springer Press, Johns Hopkins University Press, Oxford Press, and UpToDate. The other authors have no disclosures to declare.

Ethical standards: Though this study was deemed exempt by the local institutional review board, the researchers followed accepted ethical research guidelines pertaining to informed consent, anonymous data collection, anonymized aggregate data analysis, and secure data storage methods to protect study participants. Study participants had an option to receive an incentive gift card. These participants needed to input their email address where the gift card would be sent. However, the gift card link was not associated with their responses to the study survey.

Additional information

Sponsor’s Role: The sponsor provided funding for the implementation of the study. The sponsor was not involved in the design, methods, subject recruitment, data collections, analysis, or preparation of paper.

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Sajatovic, M., Herrmann, L.K., Knebusch, C. et al. A Randomized Prospective Survey Targeting Knowledge, Barriers, Facilitators and Readiness to Participation in Dementia Research. J Prev Alzheimers Dis 10, 790–799 (2023). https://doi.org/10.14283/jpad.2023.124

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  • DOI: https://doi.org/10.14283/jpad.2023.124

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