Communicative participation outcomes measurement in neurologic communication diso

描述(由申请者提供)：沟通是我们大多数日常活动所必需的。“交际性参与”一词指的是履行我们生活中的沟通方面的角色，包括就业、家务管理和人际关系。患有慢性言语或声音障碍的成年人在交流参与方面往往面临严重限制。传统上，言语语言病理学家(SLP)遵循大多数医疗保健学科的模式，试图通过论述损伤/活动限制(语音可理解性/声音质量)来减轻残疾。尽管许多基于损害/活动的干预措施已被证明是有效的，并将继续在临床实践中占据重要地位，但临床和研究证据表明，标准的干预措施往往无法使言语功能恢复正常，许多人长期存在沟通障碍和参与日常活动的普遍问题。残疾现在被认为是一种生物、心理和社会现象，其参与受到许多社会和环境变量以及身体损害的影响。随着这一概念的转变，言语语言病理学领域的一些团体正在倡导采取更多以参与为重点的干预方法，以解决参与的障碍、环境和个人障碍。然而，关于标准干预措施在多大程度上帮助个人实现其参与目标，标准干预措施后哪些参与需求仍未得到满足，以及以参与为重点的干预措施将包括哪些变量以产生对客户最有意义的结果，仍存在许多问题。该领域缺乏有效和可靠的工具来衡量参与结果，这严重限制了参与经验模型的发展，以指导研究和临床方向。该团队开发了一种用于交流参与的自我报告结果测量工具--交流参与题库(CPIB)，并在五个运动语言/声音人群中进行了验证。CPIB借鉴了NIH PROMIS(患者报告的结果测量信息系统)计划实施的方法，包括使用项目反应理论(IRT)和适应性测试，以最大限度地提高工具的相关性、精确度和可及性。使用这些新的测量能力，这项纵向研究比较了接受已知改善语音/声音功能的标准治疗组与参与稳定性疾病的慢性病组的交流参与的变化。将测量身体(言语严重程度、疲劳、抑郁、健康)、环境(社会支持、社会网络)和个人(人口统计、言语需求、自我效能)变量，以确定影响参与结果的关键机制。该项目包括四种语音/语音障碍(帕金森氏病引起的构音障碍、单侧声带不动、痉挛性发音困难和中风引起的运动性语音障碍；n=175)，以调查未来语音/语音障碍范围内以参与为重点的干预措施的变量。

DESCRIPTION (provided by applicant): Communication is essential to most of our daily activities. The term "communicative participation" refers to the fulfillment of the communication aspects of our life roles including employment, household management, and relationships. Adults with chronic speech or voice disorders often face significant restrictions in their communicative participation. Traditionally, speech-language pathologists (SLPs) have followed the pattern of most healthcare disciplines in terms of attempting to alleviate disability by treatig the impairment/activity limitations (speech intelligibility/voice quality). Although many impairment/activity-based interventions have been shown to be effective and will continue to hold an essential place in clinical practice, clinical and research evidence shows that standard interventions often do not return speech function to normal, and many people are left with longstanding communication disorders and pervasive problems participating in daily activities. Disability is now envisioned as a biopsychosocial phenomenon with participation shaped by many social and environmental variables as well as physical impairment. With this conceptual shift, some groups in the speech- language pathology field are advocating that interventions take a more 'participation-focused' approach to address impairment, environmental and personal barriers to participation. There are many questions; however, regarding how well standard interventions help individuals meet their participation goals, what participation needs remain unmet after standard interventions, and what variables would be included in participation- focused interventions to produce the most meaningful outcomes for clients. The field has lacked valid and reliable instruments to measure participation outcomes, and this has severely limited the development of empirical models of participation to guide research and clinical directions. This team has developed a self- report outcomes measure for communicative participation- the Communicative Participation Item Bank (CPIB) which has been validated in five motor speech/voice populations. The CPIB draws on methods implemented by the NIH PROMIS (Patient-Reported Outcomes Measurement Information System) program, including using Item Response Theory (IRT) and adaptive testing to maximize instrument relevance, precision and accessibility. Using these new measurement capabilities, this longitudinal study compares changes in communicative participation in groups receiving standard treatments known to improve speech/voice function to participation in chronic groups with stable disorders. Physical (speech severity, fatigue, depression, health), environmental (social support, social networks), and personal (demographic, speech needs, self-efficacy) variables will be measured to identify key mechanisms influencing participation outcomes. This project includes four speech/voice disorders (dysarthria due to Parkinson's disease, unilateral vocal fold immobility, spasmodic dysphonia, and motor speech disorders due to stroke; n=175) to investigate variables for future participation- focused interventions across the range of speech/voice disorders.