@article{9fe93f818a7945789d816c5e0943a209,
title = "Retaining Participants in Longitudinal Studies of Alzheimer's Disease",
abstract = "Background: Retention of study participants is essential to advancing Alzheimer's disease (AD) research and developing therapeutic interventions. However, recent multi-year AD studies have lost 10% to 54% of participants. Objective: We surveyed a random sample of 443 participants (Clinical Dementia Rating [CDR]≤1) at four Alzheimer Disease Research Centers to elucidate perceived facilitators and barriers to continued participation in longitudinal AD research. Methods: Reasons for participation were characterized with factor analysis. Effects of perceived fulfillment of one's own goals and complaints on attendance and likelihood of dropout were estimated with logistic regression models. Open-ended responses suggesting study improvements were analyzed with a Latent Dirichlet Allocation topic model. Results: Factor analyses revealed two categories, personal benefit and altruism, as drivers of continued participation. Participants with cognitive impairment (CDR > 0) emphasized personal benefits more than societal benefits. Participants with higher trust in medical researchers were more likely to emphasize broader social benefits. A minority endorsed any complaints. Higher perceived fulfillment of one's own goals and fewer complaints were related to higher attendance and lower likelihood of dropout. Facilitators included access to medical center support and/or future treatment, learning about AD and memory concerns, and enjoying time with staff. Participants' suggestions emphasized more feedback about individual test results and AD research. Conclusion: The results confirmed previously identified facilitators and barriers. Two new areas, improved communication about individual test results and greater feedback about AD research, emerged as the primary factors to improve participation.",
keywords = "Alzheimer's disease, barriers, facilitators, retention",
author = "Matthew Gabel and Bollinger, {Rebecca M.} and Coble, {Dean W.} and Grill, {Joshua D.} and Edwards, {Dorothy F.} and Lingler, {Jennifer H.} and Erin Chin and Stark, {Susan L.}",
note = "Funding Information: This study was supported by the National Alzheimer{\textquoteright}s Coordinating Center (NACC) Collaborative Project, 2017-01. The NACC database is funded by the National Institute on Aging, National Institutes of Health (NIA-NIH) Grant U01 AG016976. NACC data are contributed by the NIA-funded ADRCs: P30 AG019610 (PI Eric Reiman, MD), P30 AG013846 (PI Neil Kowall, MD), P50 AG008702 (PI Scott Small, MD), P50 AG025688 (PI Allan Levey, MD, PhD), P50 AG047266 (PI Todd Golde, MD, PhD), P30 AG010133 (PI Andrew Saykin, PsyD), P50 AG005146 (PI Marilyn Albert, PhD), P50 AG005134 (PI Bradley Hyman, MD, PhD), P50 AG016574 (PI Ronald Petersen, MD, PhD), P50 AG005138 (PI Mary Sano, PhD), P30 AG008051 (PI Thomas Wisniewski, MD), P30 AG013854 (PI M. Marsel Mesulam, MD), P30 AG008017 (PI Jeffrey Kaye, MD), P30 AG010161 (PI David Bennett, MD), P50 AG047366 (PI Victor Henderson, MD, MS), P30 AG010129 (PI Charles DeCarli, MD), P50 AG016573 (PI Frank LaFerla, PhD), P50 AG005131 (PI James Brewer, MD, PhD), P50 AG023501 (PI Bruce Miller, MD), P30 AG035982 (PI Russell Swerdlow, MD), P30 AG028383 (PI Linda Van Eldik, PhD), P30 AG053760 (PI Henry Paulson, MD, PhD), P30 AG010124 (PI John Trojanowski, MD, PhD), P50 AG005133 (PI Oscar Lopez, MD), P50 AG005142 (PI Helena Chui, MD), P30 AG012300 (PI Roger Rosenberg, MD), P30 AG049638 (PI Suzanne Craft, PhD), P50 AG005136 (PI Thomas Grabowski, MD), P50 AG033514 (PI Sanjay Asthana, MD, FRCP), P50 AG005681 (PI John Morris, MD), P50 AG047270 (PI Stephen Strittmatter, MD, PhD). The study methodology benefited from the advice of Professor Christopher Lucas, Department of Political Science, Washington University in St. Louis. Funding Information: Research participants were recruited from active cohorts at four ADRCs funded by the National Institute on Aging: Knight Alzheimer Disease Research Center at Washington University in St. Louis (Knight ADRC), University of Pittsburgh ADRC (PITT ADRC), University of Wisconsin ADRC (Wisconsin ADRC), and University of California–Irvine ADRC (UCI ADRC). Participants and study partners were invited to participate if the participant: 1) was 45 years of age or older, 2) was currently enrolled in longitudinal studies, and 3) had a Clinical Dementia Rating (CDR{\textregistered}) score of ≤ 1 at their previous clinical assessment. Participants were excluded if they were institutionalized and/or did not reside in the geographic area of the ADRC. Publisher Copyright: {\textcopyright} 2022 - IOS Press. All rights reserved.",
year = "2022",
doi = "10.3233/JAD-215710",
language = "English",
volume = "87",
pages = "945--955",
journal = "Journal of Alzheimer's Disease",
issn = "1387-2877",
number = "2",
}