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

沟通桥梁：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: 9449181
• 负责人: EMILY J ROGALSKI
• 金额: $ 66.32万
• 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/9449181
• 关键词: Activities of Daily Living; 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; Effectiveness; Enrollment; Evaluation; Exercise; Family; Frontotemporal Lobar Degenerations; Funding; Future; Geography; Goals; Guidelines; Health Services Accessibility; Home environment; Impairment; Improve Access; Individual; 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; Research Infrastructure; Sample Size; Services; Severity of illness; Specialist; Speech; Stroke; Syndrome; Time; Training; Treatment outcome; Universities; Validation; Videoconferences; Withdrawal; Work; arm; base; clinical care; design; eHealth; efficacy study; evidence base; implementation research; language impairment; multidisciplinary; novel; person centered; personalized care; premature; primary outcome; response; restoration; skills; translational neuroscience; treatment center; treatment program; treatment response; trial design; web app

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.

语言障碍（失语症）是临床痴呆综合征原发性进行性失语症的定义特征 (PPA)并且显著地损害了被诊断个体的独立性和日常生活活动。有 目前还没有治疗方法可以逆转由阿尔茨海默病引起的PPA的退行性过程 或者是额颞叶退化非药物干预，包括言语治疗 可能对被诊断个体的生活质量有显著的益处，但疗效研究很少， 指导最佳临床护理实践的指南。在获得护理方面也存在一些障碍。患有PPA的人 非药物服务的转诊不足，使得家庭难以找到护理，除非患有 PPA住在知情专家附近。基于证据的研究结果，从言语语言治疗研究是 这种方法很有前途，但仅限于病例报告或当地患者的小群体，而且往往缺乏对照组。这 该项目将通过使用先前验证的远程实践，规避地理限制和难以获得护理的问题 为患有PPA的成年人提供语音语言治疗的模式。拟议的研究将使用随机对照 试验设计（RCT），以评估轻度PPA成人患者的以人为中心的治疗（实验性） 与剂量匹配的仅损伤治疗相比， （对照）。90名诊断为PPA的个人及其积极参与的护理伙伴将入组 study.该研究的实验组和对照组都将在12个月的时间内接受治疗和评估。 个月该试验将由一个定制的网络应用程序支持，该应用程序具有失语症友好的设计，并提供 让参与者连接到评估和治疗会议的地方。与会者还将使用网络应用程序， 每周收到家庭练习的待办事项清单，这些清单是为了加强在学习期间学到的基于证据的策略而提供的。 治疗疗程，并促进在日常生活中的实施。目标1将决定组内 实验和对照治疗对患有PPA的个体的反应。目标2将决定组间 治疗结果的差异。在没有治愈痴呆症的方法的情况下，重要的是要确定和评估策略 帮助个人最大限度地提高生活质量，这项研究将有助于满足这一需求。