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 阿尔茨海默病和相关痴呆(AD/ADRD)患者经常出现吞咽困难 导致严重的健康后果，包括照顾者负担增加、营养不良、肺炎、 生活质量和死亡率下降。AD/ADRD患者吞咽困难的常用治疗方法 代偿性方法不会导致吞咽生理的持续改善，而且通常 对生活质量产生负面影响。目前还没有有效的治疗吞咽困难的方法 AD/ADRD，可实际应用或对燕子的生理有持久影响。当前 AD/ADRD临床吞咽困难研究的招募方法主要是从 门诊设置或预先存在的诊断，这可能会对弱势群体的参与造成障碍， 可能获得护理的机会有限、缺乏有关AD/ADRD服务的信息以及更多 很可能被低估了。因此，来自弱势背景的不同个人 在临床AD/ADRD和吞咽困难研究中不成比例地代表不足。博士的长期目标是。 罗格斯-普利亚的研究计划是为了改善患有癌症的人的健康和生活质量 AD/ADRD与吞咽困难有关。本应用程序的总体目标是作为行政补充 我们的父级奖项R01 1K76AG068590，是为了与社区组织发展互惠伙伴关系 在戴恩县和阿拉丘亚县让不同的AD/ADRD患者参与以吞咽困难为重点的临床研究 并创造资源，促进包容性未来研究所需的长期关系。 因此，我们的目标是：1)与社区站点发展合作伙伴关系，为 招募患有AD/ADRD和吞咽困难的不同参与者。我们将使用基于社区的 参与性研究(CBPR)框架，与社区组织建立伙伴关系，支持 威斯康星州戴恩县代表不足的群体(黑人和拉丁裔个人)。作为一个子目标，我们将 建立这些站点中对吞咽困难感兴趣的AD/ADRD患者的临床研究登记 这项研究将支持母公司K76临床试验的招募工作。2)评估对以下方面的认识 吞咽困难和检查参与吞咽困难的感知障碍和促进者 从戴恩县和阿拉丘亚县弱势社区的角度进行研究。我们会 在威斯康星州戴恩县与15名拉丁裔社区成员开展焦点小组，作为AIM的扩展 家长奖的3分。此外，我们将与15名黑人和拉丁裔社区成员组成焦点小组 来自佛罗里达州阿拉丘亚县的弱势家庭。定性分析的结果将支持 未来开发吞咽困难研究工具箱，以支持招募代表性不足的群体。这 附录将在父级奖项的基础上，解决改善纳入的根本障碍 在临床吞咽困难研究中，患有AD/ADRD的弱势、代表性不足的个体。

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