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阿尔茨海默病临床试验参与的障碍:少数族裔人群的视角。

Barriers to Alzheimer Disease Clinical Trial Participation in a Minority Population.

机构信息

Memory Disorders Center & Alzheimer's Research Unit, Hawaii Pacific Neuroscience, Honolulu, Hawaii.

John A. Burns School of Medicine, University of Hawaii, Honolulu, Hawaii.

出版信息

Cogn Behav Neurol. 2024 Mar 1;37(1):40-47. doi: 10.1097/WNN.0000000000000359.

Abstract

BACKGROUND

Alzheimer disease (AD), the most common neurodegenerative disorder in the United States, disproportionately burdens minority populations.

OBJECTIVE

To explore barriers to AD clinical trial participation by Asian and Native Hawaiian patients diagnosed with AD or mild cognitive impairment.

METHOD

We surveyed 187 patients with a Mini-Mental State Examination score ≥14 between January 2022 and June 2022. The score cutoff for clinical trial eligibility was set by the institution. Individuals also completed a 15-question telephone survey that assessed demographics, barriers to clinical trial participation, and clinical trial improvement methods.

RESULTS

Forty-nine patients responded, with a response rate of 26%. Asian and Native Hawaiian patients were less likely than White patients to participate in AD trials. The main barrier to participation was a lack of information about AD trials. Providing additional information regarding AD trials to patients and family members were listed as the top two reasons patients would consider participating in a clinical trial.

CONCLUSION

Insufficient information about AD clinical trials is the primary barrier to participation among Asian and Native Hawaiian patients, followed by difficulty coordinating transportation and, in the case of Asians, the time required for clinical trials. Increased outreach, education, and assistance with logistics in these populations should be pursued to improve rates of participation in clinical trials.

摘要

背景

阿尔茨海默病(AD)是美国最常见的神经退行性疾病,不成比例地给少数族裔人口带来负担。

目的

探索被诊断患有 AD 或轻度认知障碍的亚裔和夏威夷原住民患者参与 AD 临床试验的障碍。

方法

我们调查了 2022 年 1 月至 2022 年 6 月之间 Mini-Mental State Examination 评分≥14 的 187 名患者。临床试验资格的评分截止点由机构设定。个人还完成了一项 15 个问题的电话调查,评估了人口统计学、参与临床试验的障碍以及临床试验改进方法。

结果

49 名患者做出了回应,回应率为 26%。亚裔和夏威夷原住民患者参与 AD 试验的可能性低于白人患者。参与的主要障碍是缺乏有关 AD 试验的信息。向患者和家属提供更多有关 AD 试验的信息被列为患者考虑参与临床试验的前两个原因。

结论

缺乏有关 AD 临床试验的信息是亚裔和夏威夷原住民患者参与的主要障碍,其次是协调交通的困难,以及在亚裔患者的情况下,临床试验所需的时间。应该在这些人群中开展更多的外展、教育和后勤援助,以提高临床试验的参与率。

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