TY - JOUR
T1 - Perceptions of Research Burden and Retention among Participants in ADRC Cohorts
AU - Gabel, Matthew
AU - Bollinger, Rebecca M.
AU - Knox, Melissa
AU - Coble, Dean W.
AU - Grill, Joshua D.
AU - Edwards, Dorothy F.
AU - Stark, Susan L.
AU - Lingler, Jennifer H.
N1 - Publisher Copyright:
© 2022 Lippincott Williams and Wilkins. All rights reserved.
PY - 2022/10/1
Y1 - 2022/10/1
N2 - Objectives: Alzheimer disease (AD) and related dementias clinical research is associated with significant participant burden. The Perceived Research Burden Assessment (PeRBA) measures participants' perceptions of logistical, psychological, and physical burdens. The purpose of this study was to assess PeRBA's psychometric properties, perceptual sources, and behavioral consequences with participants in a multisite study of participant retention in longitudinal cohort studies of Alzheimer disease and related dementias. Design: Multicenter mixed methods. Setting: In-person or phone. Participants: A total of 443 participants at 4 NIA-funded Alzheimer Disease Research Centers (ADRCs) were randomly selected and invited to participate if they were 45 years of age or more, enrolled in longitudinal studies, and had a Clinical Dementia Rating Scale global score ≤1. Measurements: Participants completed a 20-minute survey including the 21-item PeRBA about their research participation. Results: PeRBA demonstrated high-internal consistency and convergent validity. PeRBA scores correlated with expected perceptual factors. Higher PeRBA scores were associated with lower attendance and higher dropout rates. Conclusions: PeRBA can be used by researchers to identify participants who may feel overburdened and tailor approaches and strategies to support participants in longitudinal AD studies, maximizing participation, and reducing dropout. Making efforts to increase participants' understanding of study procedures, and building and maintaining trust throughout the study, can contribute to reducing perceived burden and potentially increasing retention in longitudinal AD studies.
AB - Objectives: Alzheimer disease (AD) and related dementias clinical research is associated with significant participant burden. The Perceived Research Burden Assessment (PeRBA) measures participants' perceptions of logistical, psychological, and physical burdens. The purpose of this study was to assess PeRBA's psychometric properties, perceptual sources, and behavioral consequences with participants in a multisite study of participant retention in longitudinal cohort studies of Alzheimer disease and related dementias. Design: Multicenter mixed methods. Setting: In-person or phone. Participants: A total of 443 participants at 4 NIA-funded Alzheimer Disease Research Centers (ADRCs) were randomly selected and invited to participate if they were 45 years of age or more, enrolled in longitudinal studies, and had a Clinical Dementia Rating Scale global score ≤1. Measurements: Participants completed a 20-minute survey including the 21-item PeRBA about their research participation. Results: PeRBA demonstrated high-internal consistency and convergent validity. PeRBA scores correlated with expected perceptual factors. Higher PeRBA scores were associated with lower attendance and higher dropout rates. Conclusions: PeRBA can be used by researchers to identify participants who may feel overburdened and tailor approaches and strategies to support participants in longitudinal AD studies, maximizing participation, and reducing dropout. Making efforts to increase participants' understanding of study procedures, and building and maintaining trust throughout the study, can contribute to reducing perceived burden and potentially increasing retention in longitudinal AD studies.
KW - Alzheimer disease
KW - dementia
KW - longitudinal studies
KW - psychogeriatrics
KW - research design and methodology
UR - http://www.scopus.com/inward/record.url?scp=85143088676&partnerID=8YFLogxK
U2 - 10.1097/WAD.0000000000000514
DO - 10.1097/WAD.0000000000000514
M3 - Article
C2 - 35796752
AN - SCOPUS:85143088676
SN - 0893-0341
VL - 36
SP - 281
EP - 287
JO - Alzheimer disease and associated disorders
JF - Alzheimer disease and associated disorders
IS - 4
ER -