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

我们提出了一项NIH第一阶段(R61)研究，以适应、改进和试点测试基于Web的关怀合作伙伴工具，以 吞咽困难喂养(WeCareToFeedDysphagia)，随后进行NIH第四阶段(R33)全面检查，为期24个月， 随机对照试验(RCT)，以确定WeCareToFeed吞咽困难的减负效果 在社区居住的阿尔茨海默病(AD)和AD相关痴呆患者的护理伙伴 (AD/ADRD)，住院期间诊断为口咽吞咽困难(OD)。OD，一种毁灭性的 影响近90%AD/ADRD住院患者的综合征是护理的重要预测因素- 合作伙伴负担，这反过来又导致护理-合作伙伴和患者结果差(例如，生活质量，QOL)。我们的 初步数据显示，AD/ADRD患者的护理伙伴在出院时面临戏剧性的 和长期未得到满足的与吸毒有关的护理需求：a.知识不足；b.不切实际的管理 期望；C.患者的生活质量考虑；D.无法应对患者的沮丧/拒绝进食 吞咽困难饮食；以及E.缺乏能力/技能。这项建议的总体目标是在 使用单一组件，轻松照顾患有AD/ADRD和OD的社区居民的合作伙伴 实施干预，解决未得到满足的与服药有关的护理需求。在自律的指导下 理论框架，WeCareToFeedDysphagia将使用书面和视频内容，关怀伙伴证明， 常见问题和资源链接：A.提供准确的信息(例如，吞咽困难饮食)；B. 设定现实的期望；C.确定/支持喂养目标(QOL考量)；D.确认/支持 照顾伴侣的感受；以及E.为OD管理提供能力/技能。R61阶段将适应， 改进和试点测试WeCareToFeedDysphagia，通过以下方式减轻护理伙伴的负担：调整我们现有的网络- 通过整合利益相关者的意见(目标1)基于工具，导致WeCareToFeedDysphagia；改进工具 通过可用性/可接受性测试(目标2)；以及进行试点RCT(N=60)，以确定初步的 WeCareToFeedDysphagia减轻护理伙伴负担的有效性以及后续治疗的可行性 全面随机对照试验(目标3)。我们将使用技术(例如智能手机)评估护理合作伙伴报告的结果： 3个月的院后护理--伴侣负担(主要结果)和生活质量(次要结果)。去/不去 全面随机对照试验的标准被定义为：可行性：≥50%同意，≤20%自然减员3个月，以及 ≥80%的工具参与度；≥0.3的效果大小对减轻护理伙伴负担的初步效果。这个 R33阶段将确定WeCareToFeedDysphagia通过以下方式减轻护理伙伴负担的有效性： 在11家不同的Northwell Health医院进行为期24个月的全面随机对照试验(N=406)(目标4)和 进行主持人和调解人分析，以检查对干预效果的影响(目标5)。这个 该提案直接响应了NIA的战略方向，即制定有效的干预措施，以减轻 与年龄相关的疾病，改善AD/ADRD患者及其护理伙伴的生活质量。

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.