Administrative Supplement to Communication Bridge: A person-centered Internet-based intervention for individuals with primary progressive aphasia

《沟通桥》的行政补充：针对原发性进行性失语症患者的以人为本、基于互联网的干预措施

• 批准号: 10058122
• 负责人: EMILY J ROGALSKI
• 金额: $ 32.07万
• 依托单位: NORTHWESTERN UNIVERSITY AT CHICAGO
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-15 至 2022-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10058122
• 关键词: Activities of Daily Living; Administrative Supplement; Adult; Alzheimer' s Disease; Aphasia; Blinded; Caring; Case Study; Clinical; Clinical Research; Clinical Trials; Communication; Control Groups; Custom; Data; Decision Making; Dementia; Diagnosis; Disease; Dose; Enrollment; Evaluation; Exercise; Family; Frontotemporal Lobar Degenerations; Funding; Future; Geography; Goals; Guidelines; Health Services Accessibility; Home environment; Impairment; Improve Access; Individual; Infrastructure; Insurance; Internet; Intervention; Intervention Studies; Language; Language Therapy; Life; Measures; Mediating; Medical; Mental Depression; Modeling; Natural Language Processing; Nature; Nerve Degeneration; Neurodegenerative Disorders; Outcome; Outcome Study; Outcomes Research; Participant; Partner Communications; Pathologist; Patients; Performance; Primary Progressive Aphasia; Process; Quality of life; Randomized Controlled Trials; Recommendation; Research; Research Design; Sample Size; Services; Severity of illness; Specialist; Speech; Syndrome; Time; Training; Treatment outcome; Universities; Validation; Videoconferences; Withdrawal; Work; arm; base; clinical care; design; eHealth; effectiveness evaluation; efficacy study; evidence base; experimental arm; experimental group; implementation research; language impairment; multidisciplinary; novel; person centered; personalized care; premature; primary outcome; response; restoration; skills; stroke-induced aphasia; translational neuroscience; treatment center; treatment program; treatment response; trial design; web app

PROJECT SUMMARY/ABSTRACT: Language impairment (aphasia) is the defining feature of the clinical dementia syndrome primary progressive aphasia (PPA) and significantly compromises the diagnosed individual's independence and activities of daily living. There are currently no treatments to reverse the degenerative process responsible for PPA, which is caused by Alzheimer's disease or a form of frontotemporal lobar degeneration. Nonpharmacological interventions including speech-language treatment may offer significant benefit to the diagnosed individual's quality of life, but there are few efficacy studies and no guidelines to direct best clinical care practices. There are also several barriers to accessing care. Individuals with PPA are under-referred for nonpharmacological services, making it challenging for families to find care unless the individual with PPA lives near an informed specialist. Evidence-based research outcomes from speech-language therapy studies are promising but have been limited to case reports or small groups of local patients and often lack a control group. This project will circumvent both geographic limitations and poor access to care by using a previously validated telepractice model to deliver speech-language treatments to adults with PPA. The proposed study will use a randomized controlled trial design (RCT) to evaluate whether a person-centered treatment (Experimental) for adults with mild PPA maximizes functional communication participation as compared to a dose-matched impairment-only treatment (Control). Ninety individuals with a diagnosis of PPA and their actively-engaged care partners will be enrolled into the study. Both the Experimental and Control arms of the study will receive treatment and evaluations over the course of 12 months. The trial will be supported by a custom web-application, which has an aphasia-friendly design and provides a place for participants to connect to evaluation and treatment sessions. Participants will also use the web-application to receive weekly To-Do lists of home exercises, which are provided to reinforce evidence-based strategies learned during treatment sessions and to facilitate implementation into the context of daily life. Aim 1 will determine the within-group response of the Experimental and Control treatments for individuals with PPA. Aim 2 will determine between group differences in treatment outcomes. In the absence of a cure for dementia, it is important to identify and evaluate strategies that help individuals maximize their quality of life, and this study will help fulfill this need.

项目摘要/摘要： 语言障碍（失语）是临床痴呆综合征主要进行性失语症的定义特征 （PPA）并严重损害了被诊断的人的独立性和日常生活活动。有 目前尚无治疗方法来扭转负责PPA的退化过程，这是由阿尔茨海默氏病引起的 或一种额颞叶变性的形式。非药理学干预措施，包括语音治疗 可能会为被诊断的人的生活质量带来重大好处，但是效力研究很少，没有 指导最佳临床护理实践的指南。也有一些获得护理的障碍。患有PPA的人是 非药理学服务的参考不足，除非个人与 PPA生活在知情专家附近。言语治疗研究的基于证据的研究结果是 有希望，但仅限于病例报告或一小部分当地患者，并且通常缺乏对照组。这 通过使用先前验证的远程处理 为PPA的成年人提供语音治疗的模型。拟议的研究将使用随机控制的 试验设计（RCT）评估是否以人为中心的患有轻度PPA的成年人的治疗（实验） 与仅剂量匹配损伤治疗相比，最大化功能通信参与 （控制）。有90名诊断为PPA及其积极参与的护理伙伴的人将入学 学习。研究的实验和控制臂都将在12过程中接受治疗和评估 月份。该试验将由自定义的网络应用程序支持，该应用具有友好的设计，并提供了一个 参与者可以连接到评估和治疗课程的地方。参与者还将使用网络应用程序 接受每周的家庭练习清单，以加强循证策略 治疗课程并促进实施日常生活。 AIM 1将确定组内 PPA个体的实验和对照治疗的反应。 AIM 2将确定组之间 治疗结果的差异。在缺乏治疗痴呆症的情况下，识别和评估策略很重要 这可以帮助个人最大化自己的生活质量，这项研究将有助于满足这一需求。