Retention of Study Partners in Longitudinal Studies of Alzheimer Disease

Abstract

Background: Study partners are required for all participants at Alzheimer’s Disease Research Centers (ADRCs). Study partners’ attitudes and beliefs may contribute to missed visits and negatively impact retention of participants in longitudinal AD studies. Objective: Study partners (N = 212) of participants (Clinical Dementia Rating® [CDR]≤2) at four ADRCs were randomly surveyed to examine their facilitators and barriers to continued participation in AD studies. Methods: Reasons for participation were analyzed with factor analysis and regression analysis. Effects of complaints and goal fulfillment on attendance were estimated with fractional logistic models. Open-ended responses were characterized with a Latent Dirichlet Allocation topic model. Results: Study partners participated for personal benefit and altruism. They emphasized personal benefits more when their participants had a CDR > 0 than when they had a CDR = 0. This difference declined with participant age. The majority of study partners rated their ADRC participation as positive and meeting their goals. Although half reported at least one complaint, very few regretted participating. Those who reported that ADRC participation fulfilled their goals or had fewer complaints were more likely to have perfect attendance. Study partners requested more feedback about test results and better management of study visits. Conclusion: Study partners are motivated by both personal and altruistic goals. The salience of each goal depends on their trust in researchers and the participant’s cognitive status and age. Retention may improve with perceived goal fulfillment and fewer complaints. Potential areas for improving retention are providing more information about the participant’s test results and better management of study visits.