Retention of Study Partners in Longitudinal Studies of Alzheimer Disease

Abstract Background Alzheimer Disease Research Centers (ADRCs) require study partners (SPs) for all participants. SPs accompany participants to study visits, ensure protocol compliance and serve as informants for outcomes and adverse event reporting. Their attitudes and beliefs may therefore affect longitudinal data collection and retention for AD studies. However, little research has examined barriers and facilitators to SP participation in longitudinal AD investigations. Objective A random sample of study partners (N = 212) of participants who had no or mild symptoms (global Clinical Dementia Rating [CDR]≤1) at four ADRCs were surveyed to examine 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. Results Study partners most often participated in ADRC research for personal benefit and altruism. A majority of study partners rated ADRC participation as positive and meeting their goals. Although half reported at least one complaint, few regretted participating. When the participants had a CDR>0, spouse study partners (p<.01) and sibling study partners (p<.01) were more likely to emphasize personal benefits than were children of participants (p<.01) Spousal caregivers of participants with CDR>0, cited personal benefit as their primary motivation to participate while adult children of cognitively normal participants (CDR = 0) cited personal benefit. Respondents whose personal goals were met had fewer complaints and were more likely to have perfect attendance. More feedback about test results and study findings and better management of study visits were the most common recommendations. Conclusion Study partners are motivated by both personal and altruistic goals. The salience of each goal depends on study partner type and the participant’s cognitive status. Fulfilling these goals may improve retention and reduce study partner complaints.