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理解脑捐赠决策:来自克利夫兰阿尔茨海默病研究中心的犹豫不决的预测因素及随时间的变化

Understanding brain donation decisions: Predictors of indecision and change over time from the Cleveland Alzheimer's Disease Research Center.

作者信息

Powell Lyndsi, Silva David, Kovacevich Alexsandra, Pillai Jagan, Lynn Audrey, Song Sunah, Appleby Brian S

机构信息

Department of Neurology, University Hospitals Cleveland Medical Center, Cleveland, Ohio, USA.

Department of Neurology, Case Western Reserve University School of Medicine, Cleveland, Ohio, USA.

出版信息

Alzheimers Dement. 2025 Sep;21(9):e70698. doi: 10.1002/alz.70698.

DOI:10.1002/alz.70698
PMID:40926627
Abstract

INTRODUCTION

Little is known about factors influencing indecision or changes in brain donation program (BDP) enrollment status among Alzheimer's disease and related dementias research participants. This study examined demographic features associated with these decisions in participants from the Cleveland Alzheimer's Disease Research Center (CADRC).

METHODS

Demographics and BDP status were extracted from the CADRC database and analyzed based on initial and current BDP enrollment status.

RESULTS

At baseline, BDP enrollees were more likely to be older, cognitively impaired, White, partnered, have more years of education, and have a relative or partner serving as a study partner. Participants who changed BDP status over time were more often cognitively unimpaired and had more CADRC visits. Fewer years of education predicted changing from "undecided" to "yes." Enrollment rates varied significantly between study staff.

DISCUSSION

Several demographic features are associated with uncertainty or change in BDP enrollment. These factors should be further examined to optimize ADRC participants' experience.

HIGHLIGHTS

Twenty-one percent of participants changed their brain donation program (BDP) enrollment status during the study. BDP enrollment changers were more often cognitively normal and had more study visits. Fewer years of education predicted switching BDP status from undecided to yes. BDP enrollment and change rates varied between interactions with site staff members.

摘要

引言

关于影响阿尔茨海默病及相关痴呆症研究参与者在脑捐赠项目(BDP)登记状态方面犹豫不决或改变的因素,我们所知甚少。本研究调查了克利夫兰阿尔茨海默病研究中心(CADRC)参与者中与这些决定相关的人口统计学特征。

方法

从CADRC数据库中提取人口统计学信息和BDP状态,并根据最初和当前的BDP登记状态进行分析。

结果

在基线时,BDP登记参与者更有可能年龄较大、存在认知障碍、为白人、已婚、受教育年限更长,并且有亲属或伴侣作为研究伙伴。随着时间推移改变BDP状态的参与者更常无认知障碍且有更多的CADRC就诊次数。受教育年限较少预示着从“未决定”变为“是”。研究人员之间的登记率差异显著。

讨论

几个人口统计学特征与BDP登记的不确定性或变化相关。应进一步研究这些因素以优化ADRC参与者的体验。

要点

21%的参与者在研究期间改变了他们的脑捐赠项目(BDP)登记状态。改变BDP登记状态的参与者更常认知正常且有更多的研究就诊次数。受教育年限较少预示着BDP状态从未决定转变为是。BDP登记和变化率在与现场工作人员的互动中有所不同。

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