Chinese language versions of the National Alzheimer's Coordinating Center's Uniform Data Set version 4: a linguistic and cultural adaptation study

国家阿尔茨海默病协调中心统一数据集第4版中文版：语言和文化适应研究

• 批准号: 10740587
• 负责人: Clara Li
• 金额: $ 128.68万
• 依托单位: ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-08-15 至 2028-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10740587
• 关键词: Adult; Alzheimer' s Disease; Alzheimer' s disease diagnosis; Alzheimer' s disease related dementia; Assessment tool; California; Chinese; Chinese American; Clinical assessments; Cognition; Cognitive; Cognitive deficits; Communities; Data; Data Set; Databases; Dementia; Detection; Development; Diagnosis; Disease; Educational Status; Elderly; Enrollment; Evaluation; Funding; Future; Geography; Goals; Health; Individual; Instruction; Language; Linguistics; Magnetic Resonance Imaging; Minority Health Research; Neuroanatomy; Neuropsychology; Not Hispanic or Latino; Participant; Population; Psychometrics; Publishing; Records; Reporting; Research; Risk; Sampling; San Francisco; Scientist; Site; Standardization; Testing; Translations; Underrepresented Populations; Underserved Population; Universities; Update; Work; Writing; aged; bilingualism; brain magnetic resonance imaging; cognitive performance; cohort; cost; diagnostic accuracy; equity, diversity, and inclusion; ethnic minority; health equity; high risk; improved; medical schools; multidisciplinary; neural correlate; neuroimaging; neuromechanism; novel; outreach program; prognostication; programs; racial minority; recruit; sociodemographics; treatment disparity

Project Summary Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) are one of the most common disorders in adults aged 65 or above. Older Chinese Americans have a high risk of inaccurate diagnosis or delayed diagnosis of AD/ADRD due to the absence of culturally and linguistically appropriate assessment batteries and normative data. The National Alzheimer’s Coordinating Center (NACC) developed a Mandarin version of the Uniform Data Set (UDS) test battery for evaluation of older Chinese Americans in AD/ADRD research. However, several important limitations have been observed for this specific battery. For example, the translations did not include Cantonese, which together with Mandarin, is the most commonly spoken language in the US after English and Spanish. It is important to note that Cantonese and Mandarin are significantly different from one another in both spoken and written forms. Secondly, the test items and instructions that comprise the overall battery were developed through verbatim translations, which are not always culturally and linguistically relevant to the diverse older Chinese American population. Furthermore, a lack of normative data creates barriers to accurate interpretation, diagnosis, and prognostication of AD/ADRD. The proposed study aims to develop minimally biased Mandarin and Cantonese versions of the NACC UDS test battery, guided by the pilot data collected for the Mandarin version of the current UDS battery (Aim 1). The team will also generate sociodemographic-adjusted normative data using 400 older Chinese Americans with normal cognition (Aim 2) at the Alzheimer’s Disease Research Centers (ADRCs) at Icahn School of Medicine at Mount Sinai (ISMMS; n=200) and the University of California, San Francisco (UCSF; n=200). Lastly, the team will examine if cognitive performance correlates with corresponding neuroanatomical regions identified via brain magnetic resonance imaging (MRI) (Aim 3). 300 participants will be required for the MRI sub-study; 100 participants will come from the 400 cognitively normal participants already enrolled in Aim 2 (from each site: n=50), while an additional 100 MCI and 100 AD/ADRD (from each site: n=50 MCI and n=50 AD/ADRD) will need to be recruited. Participants must be primarily Mandarin/Cantonese speaking and aged 65 or above. All enrollees will undergo a dementia evaluation at the ADRCs using the newly developed Chinese versions of the NACC UDS battery. The study PIs (Li & Tee) have been successful in recruiting and evaluating Chinese speaking older adults at their respective ADRCs, generating a combined sample of >600 participants. This cohort will provide a recruitment pipeline for the proposed study. The PIs also have established relationship with stakeholders in the older Chinese communities to assist with recruitment should it become a challenge. This novel project will provide linguistically and culturally appropriate assessment tools for future cross-geographic studies that include older Chinese Americans and add value to the NACC research database. The study results will also provide normative data for the detection and diagnosis of cognitive deficits in this underserved population, which is currently nonexistent.

项目概要 阿尔茨海默病和阿尔茨海默病相关痴呆（AD/ADRD）是最常见的痴呆症之一 65 岁或以上的老年华裔美国人的疾病有很高的诊断不准确或不准确的风险。 由于缺乏文化和语言上适当的评估，导致 AD/ADRD 的延迟诊断 国家阿尔茨海默病协调中心 (NACC) 开发了普通话。 用于评估老年华裔美国人 AD/ADRD 的统一数据集 (UDS) 测试组版本 然而，这种特定电池存在一些重要的局限性。 翻译不包括粤语，粤语与普通话一起是最常用的语言 在美国，仅次于英语和西班牙语。值得注意的是，粤语和普通话有很大不同。 其次，以口头和书面形式相互交流。 整体电池是通过逐字翻译开发的，这并不总是在文化和语言上 此外，缺乏规范数据也造成了这一问题。 AD/ADRD 准确解释、诊断和预后的障碍 本研究旨在解决这一问题。 在飞行员的指导下，开发 NACC UDS 测试组的普通话和粤语版本的偏差最小 该团队还将生成当前 UDS 电池的普通话版本收集的数据（目标 1）。 使用 400 名认知正常的老年华裔美国人的社会人口学调整后的规范数据（目标 2） 西奈山伊坎医学院阿尔茨海默病研究中心 (ADRC) (ISMMS； n=200）和加州大学旧金山分校（UCSF；n=200）最后，该团队将检查认知能力。 性能将区域与通过脑磁共振识别的相应神经解剖学相关联 MRI 子研究将需要 300 名参与者； 400 名认知正常的参与者已注册参加目标 2（来自每个站点：n=50），另外 100 名参与者 需要招募 MCI 和 100 名 AD/ADRD（来自每个站点：n=50 MCI 和 n=50 AD/ADRD）参与者。 必须主要讲普通话/粤语且年龄在 65 岁或以上。所有参加者都将患有痴呆症。 使用新开发的中国版 NACC UDS 电池在 ADRC 进行评估 研究 PI。 (Li & Tee) 已成功地在各自的机构中招募和评估说中文的老年人 ADRC，生成超过 600 名参与者的合并样本，该队列将为以下人员提供招募渠道。 拟议的研究也与中国老年人的利益相关者建立了关系。 如果招聘成为一项挑战，社区将提供帮助。 以及适合未来跨地域研究（包括中国老年人）的文化上适当的评估工具 美国人并为NACC研究数据库增添价值，研究结果也将为之提供规范数据。 对这一服务不足的人群中的认知缺陷进行检测和诊断，目前尚不存在。