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Research satisfaction among participants in a preclinical Alzheimer's disease trial
Marina Ritchie1, Kedir Hussen1, Oliver Langford1
1Epstein Family Alzheimer's Therapeutic Research Institute, University of Southern California, San Diego, California, USA.
Introduction:
Empirical data capturing participants' experiences in preclinical Alzheimer's disease (AD) trials are limited. We examined participant responses on a Research Satisfaction Survey (RSS) from the Anti-Amyloid Treatment in Asymptomatic AD Study.
Methods:
Participants completed the RSS at week 0, 48, 108, 168, and 240. We examined potential differences in responses by baseline participant characteristics and trial completion status.
Results:
RSS scores were high, with > 90% of participants responding positively to all satisfaction items. Across timepoints, altruistic motivations were most frequently affirmed, while study design elements were most frequently disfavored. Affirmation of social motivations increased over time. Participants who responded "not satisfied" at baseline to repeating their decision to enroll had higher odds of study discontinuation than those who responded "satisfied" (1.99; 95% confidence interval [CI]:1.24, 3.19).
Discussion:
An RSS captures participant experiences in a preclinical AD trial, can guide decisions on study design features, and may identify those at risk for loss to follow-up.