Work

Using a Survey to Monitor Participant Experience in a Population-Based Study of Older Adults

Year: 2026

Type: article

Abstract: Consumer surveys are increasingly used in business and clinical practice, but less so in human subjects research. Within a longitudinal, population-based study of older adults, we administered a survey to monitor participants' experiences and address potential challenges. We invited participants to provide feedback on their study experience following their annual interviews, using a survey with Likert-scale questions and open-ended comments. In the first round of surveys between 2022 and 2024, 82% responded who were more likely to be White, cognitively normal, and endorse fewer than 5 depression symptoms compared with their counterparts who did not respond. In the open-ended comments, 63.2% mentioned positive overall experience, 44.3% mentioned positive interactions with staff, 19.4% mentioned the study's COVID-19 guidelines, and 17.4% shared their motivation for study participation. The survey amplified participants' voices and identified aspects of the study important to them. Understanding participants' experiences and expectations may help with retention.

Source: Alzheimer Disease & Associated Disorders

DOI: 10.1097/wad.0000000000000746

Authors: Isabella Wood, Erin Jacobsen, Tiffany Hughes, Mary Ganguli

Institutions: Midwestern University, University of Pittsburgh

Language: English

Topic: Ethics in Clinical Research

Subfield: Public Health, Environmental and Occupational Health

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: green

Funders: U.S. Department of Health and Human Services, National Institutes of Health