Participant satisfaction with dementia prevention research: Results from Home-Based Assessment trial

Mary Sano; Susan Egelko; Carolyn W Zhu; Clara Li; Michael C Donohue; Steven Ferris; Jeffrey Kaye; James C Mundt; Chung-Kai Sun; Paul S Aisen; Howard H Feldman

doi:10.1016/j.jalz.2018.05.016

Participant satisfaction with dementia prevention research: Results from Home-Based Assessment trial

Alzheimers Dement. 2018 Nov;14(11):1397-1405. doi: 10.1016/j.jalz.2018.05.016. Epub 2018 Oct 5.

Authors

Mary Sano¹, Susan Egelko², Carolyn W Zhu³, Clara Li², Michael C Donohue⁴, Steven Ferris⁵, Jeffrey Kaye⁶, James C Mundt⁷, Chung-Kai Sun⁴, Paul S Aisen⁴, Howard H Feldman⁸

Affiliations

¹ Alzheimer Disease Research Center, Department of Psychiatry, Icahn School of Medicine at Mount Sinai, New York, NY, USA; James J Peters VAMC, Bronx, NY, USA. Electronic address: [email protected].
² Alzheimer Disease Research Center, Department of Psychiatry, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
³ Alzheimer Disease Research Center, Department of Psychiatry, Icahn School of Medicine at Mount Sinai, New York, NY, USA; James J Peters VAMC, Bronx, NY, USA; Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
⁴ Department of Neurology & Biostatistics, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA.
⁵ Center for Cognitive Neurology, New York University Langone Medical Center (posthumously), New York, NY, USA.
⁶ Department of Neurology and Biomedical Engineering, Oregon Health & Science University, Portland, OR, USA.
⁷ Wisconsin Department of Health Services, Division of Care and Treatment Services, Mauston, WI, USA.
⁸ Department of Neurosciences, University of California, San Diego, CA, USA.

PMID: 30297140
DOI: 10.1016/j.jalz.2018.05.016

Abstract

Introduction: Little is known about factors affecting motivation and satisfaction of participants in dementia prevention trials.

Methods: A Research Satisfaction Survey was administered to 422 nondemented older adults who participated in the Home-Based Assessment trial.

Results: Overall satisfaction was high, with means of all individual items near to above a value of 3 on a scale from 1 (worst) to 4 (best). Greater satisfaction was associated with staff-administered interviews versus automated technologies. The most liked aspects of research participation were volunteerism, opportunity to challenge and improve mental function, and positive interactions with staff. The least liked aspect was repetitiveness of the assessments. Participants requested more contact with staff and other older adults and more feedback on performance.

Discussion: Older adults' participation in research was primarily motivated by altruism. Methodologies that facilitate human contact, encourage feedback and novelty of tasks should be incorporated into future trial design.

Keywords: Clinical Trial; Dementia prevention; Home-based assessment; Research satisfaction; Technology.

Publication types

Research Support, N.I.H., Extramural
Research Support, U.S. Gov't, Non-P.H.S.

MeSH terms

Aged, 80 and over
Altruism
Biomedical Research*
Cohort Studies
Community Participation
Dementia / prevention & control*
Dementia / psychology*
Female
Humans
Male
Motivation
Neuropsychological Tests

Grants and funding

P50 AG005138/AG/NIA NIH HHS/United States