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

语言障碍(失语症)是临床痴呆综合征原发进行性失语的主要特征 (PPA)，并严重损害被诊断的个人的独立性和日常生活能力。确实有 目前还没有治疗方法来逆转由阿尔茨海默病引起的PPA的退化过程 或者是一种额颞叶变性。包括言语语言治疗在内的非药物干预 可能会显著提高确诊患者的生活质量，但很少有疗效研究，也没有 指导最佳临床护理实践的指南。在获得医疗服务方面也存在几个障碍。患有PPA的个人是 非药理学服务转诊不足，这使得家庭很难找到护理，除非有 PPA住在一位消息灵通的专家附近。来自言语语言治疗研究的循证研究成果如下 前景看好，但仅限于病例报告或当地患者的小群体，而且往往缺乏对照小组。这 该项目将使用之前经过验证的远程实践来绕过地理限制和难以获得医疗服务的情况 为患有PPA的成年人提供言语语言治疗的模式。拟议的研究将使用随机对照研究 评价成人轻度PPA是否以人为中心的试验设计(RCT) 与剂量匹配的纯损伤治疗相比，最大限度地提高功能沟通的参与度 (控制)。90名被诊断为PPA的患者及其积极参与的护理伙伴将参加 学习。研究的实验组和控制组都将在12个疗程中接受治疗和评估 月份。该试验将由一个定制的Web应用程序支持，该应用程序具有对失语症友好的设计，并提供 供参与者连接到评估和治疗会议的地方。学员还将使用该网络应用程序 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 此外，该方案还将用于治疗课程，并促进在日常生活中的实施。目标1将决定集团内的 对PPA患者的实验和对照治疗的反应。目标2将在小组之间确定 治疗结果的差异。在没有治愈痴呆症的方法的情况下，重要的是确定和评估策略 帮助个人最大限度地提高生活质量，而这项研究将有助于满足这一需求。

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.