Original ArticlePsychometric Evaluation of the Perceived Research Burden Assessment (PeRBA) in Longitudinal Studies of Alzheimer Disease Using Rasch AnalysisKeleman, Audrey A. MSOT*; Chang, Chih-Hung PhD*,†,‡; Bollinger, Rebecca M. OTD*; Lingler, Jennifer H. PhD§; Gabel, Matthew PhD∥; Stark, Susan L. PhD* Author Information *Program in Occupational Therapy †Institute for Informatics ‡Department of Orthopaedic Surgery ∥Department of Political Science, Washington University in St. Louis, St. Louis, MO §School of Nursing, Department of Health and Community Systems University of Pittsburgh, Pittsburgh, PA This study was supported by the National Alzheimer 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 NIA-funded ADRCs, 4 of which contributed to data collection for this study: 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). This study was also supported by the Clinical Research Training Center at Washington University School of Medicine, 5TL1TR002344-05 and UL1 TR002345. The authors declare no conflicts of interest. Reprints: Susan L. Stark, PhD, Washington University in St. Louis School of Medicine, 4444 Forest Park Avenue, St. Louis, MO 63108 (e-mail: [email protected]). Supplemental Digital Content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's website, www.alzheimerjournal.com. Alzheimer Disease & Associated Disorders: October 14, 2022 - Volume - Issue - 10.1097/WAD.0000000000000532 doi: 10.1097/WAD.0000000000000532 Buy SDC PAP Metrics Abstract Introduction: The Perceived Research Burden Assessment (PeRBA) was developed to measure participant perceptions of burden in research studies. This study aimed to examine the psychometric properties of this assessment using Rasch analysis in participants in the longitudinal studies of the Alzheimer disease (AD) and their family members. Methods: PeRBA was administered to 443 participants in studies of AD and 212 family members across 4 Alzheimer Disease Research Centers. We used Rasch analysis to examine PeRBA’s psychometric properties, and data-model fit both at item and scale levels. Results: PeRBA demonstrated good reliability and item and person fit for participants and family members. A few items did not fit the model for participants or family members. Areas of content redundancy were found in items assessing similar amounts of perceived research burden. Areas of content gaps were also found, with no items assessing certain levels of perceived research burden. Conclusion: Analysis results support the good overall psychometric properties of PeRBA among research participants in studies of AD and their family members. Recommendations have been provided to improve the assessment, including rewording items and adding items that could account for a broader range of perceived research burden. Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.