Reducing Burden in Care Partners of Community-Dwelling Persons with Dementia and Oropharyngeal Dysphagia

减轻社区居民痴呆症和口咽吞咽困难患者护理伙伴的负担

• 批准号: 10570435
• 负责人: Michael A Diefenbach
• 金额: $ 41.09万
• 依托单位: FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH
• 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 2025-07-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10570435
• 关键词: Address; Affect; Alzheimer' s Disease; Alzheimer' s disease patient; Alzheimer' s disease related dementia; Behavioral; Caring; Cellular Phone; Communities; Competence; Consent; Data; Deglutition Disorders; Dementia; Diagnosis; Diet; Disease; Eating; Face; Feedback; Feeling; Female; Frustration; Gender; Genetic Transcription; Goals; Health; Home Page; Hospitalization; Hospitals; Informal Social Control; Intervention; Interview; Knowledge; Lead; Link; Liquid substance; Malignant neoplasm of urinary bladder; Mediating; Mediator; Medical Care Team; Methods; Online Systems; Oropharyngeal Dysphagia; Outcome; Participant; Patient-Focused Outcomes; Patients; Persons; Phase; Quality of life; Randomized; Randomized, Controlled Trials; Reporting; Research; Resources; Self Efficacy; Severities; Structure; Syndrome; System; Technology; Testing; Treatment Efficacy; United States National Institutes of Health; Writing; age related; caregiving; coping; design; effective intervention; efficacy evaluation; expectation; experience; feeding; hospital care; human old age (65+); improved; improved outcome; intervention effect; multidisciplinary; pilot test; primary outcome; recruit; secondary outcome; skills; stress management; success; tool; treatment as usual; usability; web-based tool

We propose an NIH Stage I (R61) study to adapt, refine, and pilot test a Web-based Care Partner Tool for Feeding in Dysphagia (WeCareToFeedDysphagia), followed by an NIH Stage IV (R33) full-scale, 24-month, randomized controlled trial (RCT), to determine the efficacy of WeCareToFeedDysphagia for reducing burden in care partners of community-dwelling persons with Alzheimer’s disease (AD) and AD-related dementias (AD/ADRD), diagnosed with oropharyngeal dysphagia (OD) during hospitalization. OD, a devastating syndrome that affects nearly 90% of hospitalized patients with AD/ADRD, is a significant predictor of care- partner burden, which, in turn, leads to poor care-partner and patient outcomes (e.g., quality of life, QoL). Our preliminary data indicate that, upon hospital discharge, care partners of patients with AD/ADRD face dramatic and persistent unmet OD-related caregiving needs: A. knowledge deficits; B. unrealistic management expectations; C. patient QoL considerations; D. inability to cope with patient’s frustration/refusal to eat dysphagia diets; and E. lack of competencies/skills. The overall goal of this proposal is to reduce burden in care partners of community-dwelling persons with AD/ADRD and OD using a single-component, easily administered, intervention that addresses unmet OD-related caregiving needs. Guided by a self-regulation theoretical framework, WeCareToFeedDysphagia will use written and video content, care-partner testimonials, frequently asked questions, and resource links, to: A. provide accurate information (e.g., dysphagia diets); B. set realistic expectations; C. identify/support feeding goals (QoL considerations); D. acknowledge/support care-partner feelings; and E. provide competencies/skills for OD management. The R61 phase will adapt, refine, and pilot test WeCareToFeedDysphagia to reduce care-partner burden by: adapting our existing web- based tool by incorporating stakeholder input (Aim 1), resulting in WeCareToFeedDysphagia; refining the tool through usability/acceptability testing (Aim 2); and conducting a pilot RCT (N=60) to determine the preliminary efficacy of WeCareToFeedDysphagia to reduce care-partner burden, as well as the feasibility of a subsequent full-scale RCT (Aim 3). We will assess care partner reported outcomes using technology (e.g., smartphones): 3-month post-hospital care-partner burden (primary outcome) and QoL (secondary outcome). The go/no-go criteria for the full-scale RCT is defined as: feasibility as ≥50% consented, ≤20% attrition at 3 months, and ≥80% tool engagement; and preliminary efficacy as effect size of ≥0.3 for reducing care-partner burden. The R33 phase will determine the efficacy of WeCareToFeedDysphagia to reduce care-partner burden by: conducting a 24-month, full-scale RCT (N=406) at 11 diverse Northwell Health hospitals (Aim 4) and conducting moderator and mediator analyses to examine the impact on intervention efficacy (Aim 5). The proposal directly responds to NIA’s strategic direction to develop effective interventions to reduce the burden of age-related diseases and improve QoL for persons with AD/ADRD and their care partners.

我们提出了一项NIH I阶段（R61）研究，以适应，完善和试点测试基于网络的护理伙伴工具 在吞咽困难（Wecaretofeeddysphagia）中进食，然后是NIH IV阶段（R33）全尺度，24个月， 随机对照试验（RCT），以确定Wecaretofeeddysphagia降低燃烧的效率 在患有阿尔茨海默氏病（AD）和广告相关痴呆症的社区居民的护理伙伴中 （AD/ADRD），在住院期间被诊断为口咽吞咽困难（OD）。 OD，毁灭性的 影响近90％的AD/ADRD患者的综合征是护理的重要预测指标 合作伙伴伯恩（Burnen）又导致护理人员和患者结果（例如，生活质量，QOL）。我们的 初步数据表明，住院后，是AD/ADRD患者的护理伙伴 和持续的未满足与OD相关的护理需求：A。知识定义； B.不切实际的管理 期望； C.患者QOL的注意事项； D.无法应付患者的挫败感/拒绝吃饭 吞咽困难饮食；和E.缺乏能力/技能。该提议的总体目标是减少伯恩的 使用单一组件的关怀社区居民的广告/ADRD和OD的伙伴很容易 管理的干预措施满足了未满足与OD相关的护理需求。在自我调节的指导下 理论框架，WecaretofeedDysphagia将使用书面和视频内容，Care-Partner证明， 常见问题和资源链接，至：A。提供准确的信息（例如吞咽困难饮食）； B 设定现实期望； C.确定/支持喂养目标（QOL考虑因素）； D.认可/支持 照顾好的感觉；和E.为OD管理提供能力/技能。 R61阶段将适应， 精炼和试点测试Wecaretofeeddysphagia减少护理伴侣Burnen：适应我们现有的网络 通过编码利益相关者输入（AIM 1）来基于工具，导致WecaretofeedDysphagia；完善工具 通过可用性/可接受性测试（AIM 2）；并进行试点RCT（n = 60）以确定初步 Wecaretofeeddysphagia的功效减少了Care-Partner Burnen，以及随后的可行性 全尺度RCT（AIM 3）。我们将使用技术（例如智能手机）评估护理伙伴报告的结果： 3个月的院后护理伴侣伯恩（主要结果）和QOL（次要结果）。 GO/No-Go 全尺度RCT的标准定义为：可行性为≥50％的同意，≤20％的损耗在3个月，并且 ≥80％的工具参与；和初步有效性，效果大小≥0.3，减少了护理伴侣。这 R33阶段将确定Wecaretofeeddysphagia降低护理伴侣的效率： 在11个Divers Northwell Health Hospitals（AIM 4）和 进行主持人和调解人分析以检查对干预效率的影响（AIM 5）。这 提案直接回应了NIA的战略方向，以制定有效的干预措施，以减少燃烧 与年龄相关的疾病并改善了AD/ADRD及其护理伙伴的QOL。