CommuniTy Partnerships tO EnGagE UnderrepresenTed Persons witH AlzhEimer's Disease in Dysphagia Research (TOGETHER)

社区伙伴关系让代表性不足的阿尔茨海默病患者（共同）参与吞咽困难研究

• 批准号: 10841340
• 负责人: Nicole M Rogus-Pulia
• 金额: $ 38.79万
• 依托单位: UNIVERSITY OF WISCONSIN-MADISON
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-15 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10841340
• 关键词: Address; Administrative Supplement; Alzheimer' s Disease; Alzheimer' s disease patient; Alzheimer' s disease related dementia; Asian; Aspiration Pneumonia; Award; Awareness; Black Populations; Black race; Caregiver Burden; Child Care; Clinical; Clinical Research; Clinical Trials; Collaborations; Communities; Community Developments; County; Databases; Deglutition; Deglutition Disorders; Development; Diagnosis; Diet Modification; Disadvantaged; Disease Progression; Disparity population; Economics; Engineering; Equity; Ethnic Origin; Florida; Focus Groups; Functional disorder; Future; Goals; Health; Health Services Accessibility; Impairment; Improve Access; Indigenous; Individual; Infrastructure; Intake; Intervention; Latinx; Latinx population; Malnutrition; Medicine; Methods; Occupations; Oral; Outcome; Outpatients; Parents; Participant; Patients; Persons; Physiology; Pneumonia; Prevalence; Quality of life; Race; Registries; Rehabilitation therapy; Reporting; Research; Research Personnel; Resources; Safety; Services; Site; Testing; Time; Treatment Efficacy; Trust; Underrepresented Populations; United States National Academy of Sciences; United States National Institutes of Health; Wisconsin; Work; clinical development; cohort; common treatment; community based participatory research; community organizations; community partnership; design; disadvantaged background; effective therapy; efficacious intervention; efficacy evaluation; experience; improved; interest; member; mortality; negative affect; neighborhood disadvantage; patient engagement; programs; recruit; respite care; social

PROJECT SUMMARY/ABSTRACT Dysphagia frequently develops in patients with Alzheimer’s Disease and Related Dementias (AD/ADRD) and leads to serious health consequences, including increased caregiver burden, malnutrition, pneumonia, decreased quality of life, and mortality. Common treatments for dysphagia in patients with AD/ADRD employ compensatory approaches that do not result in sustained improvements in swallowing physiology and often negatively affect quality of life. There are currently no effective treatments for dysphagia in patients with AD/ADRD that can be practically applied or have lasting effects on the physiology of the swallow. Current recruitment methods for clinical dysphagia research in AD/ADRD predominantly identify patients from outpatient settings or with pre-existing diagnoses, which may create barriers to participation for disadvantaged, individuals who may have limited access to care, lack information about AD/ADRD services, and are more likely to be underdiagnosed. As a result, diverse individuals from disadvantaged backgrounds are disproportionately underrepresented in clinical AD/ADRD and dysphagia research. The long-term goal of Dr. Rogus-Pulia’s research program is to improve the health and quality of life outcomes of persons with AD/ADRD as they relate to dysphagia. The overall objective of this application, an administrative supplement to our parent award R01 1K76AG068590, is to develop reciprocal partnerships with community organizations in Dane and Alachua counties to engage diverse AD/ADRD patients in dysphagia-focused clinical research and to create resources that will facilitate long-term relationships necessary for inclusive future studies. Therefore, we aim to: 1) Develop partnerships with community sites to build infrastructure for recruitment of diverse participants with AD/ADRD and dysphagia. We will use a community-based participatory research (CBPR) framework to build partnerships with community organizations supporting underrepresented groups (Black and Latinx individuals) in Dane County, Wisconsin. As a sub-aim, we will develop a clinical research registry of individuals at these sites with AD/ADRD interested in dysphagia research which will support recruitment efforts for the parent K76 clinical trial. 2) Assess awareness about dysphagia and examine perceived barriers and facilitators to participation in dysphagia-focused research from the perspectives of disadvantaged communities in Dane and Alachua Counties. We will conduct focus groups with 15 Latinx community members in Dane County, Wisconsin as an expansion of Aim 3 of the parent award. Additionally, we will conduct focus groups with 15 Black and Latinx community members from disadvantaged backgrounds in Alachua County, Florida. Results from this qualitative analysis will support future development of a dysphagia research toolbox to support recruitment of underrepresented groups. This supplement will build on the parent award by addressing fundamental barriers to improved inclusion of disadvantaged, underrepresented individuals with AD/ADRD in clinical dysphagia research.

项目摘要/摘要 阿尔茨海默氏病和相关痴呆症患者（AD/ADRD）和 导致严重的健康后果，包括增加护理人员伯恩，营养不良，肺炎， AD/ADRD患者的吞咽困难的常见治疗方法 不断导致吞咽生理学的补偿方法，通常会持续改善 负面影响生活质量。目前尚无对吞咽困难的有效治疗 可以实际应用或对燕子生理产生持久影响的AD/ADRD。当前的 AD/ADRD临床吞咽困难研究的招聘方法主要鉴定患者 门诊设置或具有预先存在的诊断，这可能会为灾难造成参与的障碍， 可能有限获得护理的个人，缺乏有关广告/ADRD服务的信息，并且更多 可能被诊断不足。结果，来自不利背景的潜水员是 在临床AD/ADRD和吞咽困难研究中的代表性不足。博士的长期目标 Rogus-Pulia的研究计划是为了改善患有 与吞咽困难有关的广告/adrd。该应用程序的总体目标是行政补充 授予我们的父母奖R01 1K76AG068590，是与社区组织建立互惠合作伙伴关系 在Dane和Alachua县，参与潜水员AD/ADRD患者参与以吞咽困难为中心的临床研究 并创造资源，以促进包含在内的未来研究所必需的长期关系。 因此，我们的目标是：1）与社区站点建立合作伙伴关系，以建立基础设施 患有AD/ADRD和吞咽困难的潜水员参与者。我们将使用基于社区的 参与研究（CBPR）框架，与支持社区组织建立合作伙伴关系 威斯康星州戴恩县的代表性群体（黑人和拉丁裔个人）不足。作为一个子，我们将 在这些网站上开发一个对吞咽困难感兴趣的个人的临床研究注册表 研究将支持父母K76临床试验的招聘工作。 2）评估对 吞咽困难并检查了感知的障碍和促进者，以参与以吞咽困难为中心 从丹恩和阿拉丘阿县的受干扰社区的角度进行研究。我们将 在威斯康星州戴恩县与15个拉丁裔社区成员进行焦点小组，以扩大目标 父母奖的第三。此外，我们将与15个黑人和拉丁社区成员一起举办焦点小组 来自佛罗里达州Alachua县的弱势背景。这种定性分析的结果将支持 未来开发吞咽困难研究工具箱，以支持代表性不足的群体的招募。这 补充将通过父母奖励来建立基本障碍，以改善包含 临床吞咽困难研究中，处于弱势，代表性不足的人为AD/ADRD。

项目成果

Impact of Dysphagia Rehabilitation in Adults on Swallowing Physiology Measured With Videofluoroscopy: A Mapping Review.

成人吞咽困难康复对通过电视透视测量的吞咽生理学的影响：绘图回顾。

• DOI: 10.1044/2022_ajslp-21-00342
• 发表时间: 2022
• 期刊: American journal of speech-language pathology
• 影响因子: 2.6
• 作者: Namasivayam-MacDonald,Ashwini;Rapley,Megan;Stewart,Josephine;Webster,Eryn;Quon,Christina;Rogus-Pulia,Nicole
• 通讯作者: Rogus-Pulia,Nicole

Deglutologist Practices and Perceptions of the Penetration-Aspiration Scale: A Survey Study.

食欲专家的实践和对渗透-渴望量表的看法：一项调查研究。

• DOI: 10.1007/s00455-023-10637-3
• 发表时间: 2024
• 期刊: Dysphagia
• 影响因子: 2.6
• 作者: Burdick,Ryan;Peña-Chávez,Rodolfo;Namasivayam-MacDonald,Ashwini;Rogus-Pulia,Nicole
• 通讯作者: Rogus-Pulia,Nicole