Communicative participation outcomes measurement in neurologic communication diso

神经沟通障碍中的沟通参与结果测量

• 批准号: 8500974
• 负责人: Carolyn Rae Baylor
• 金额: $ 29.79万
• 依托单位: UNIVERSITY OF WASHINGTON
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-03-01 至 2018-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8500974
• 关键词: Address; Adult; Advocate; Chronic; Chronic Disease; Classification; Client; Clinical; Clinical Research; Communication; Communication impairment; Communities; Development; Discipline; Disease; Dysarthria; Employment; Environment; Environmental Health; Face; Fatigue; Future; Goals; Health; Healthcare; Household; Impairment; Individual; Information Systems; International; Intervention; Knowledge; Language; Learning; Left; Life; Longitudinal Studies; Measurement; Measures; Mental Depression; Methods; Modeling; Motor; Neurologic; Outcome; Outcome Measure; Parkinson Disease; Participant; Partner Communications; Pathologist; Patient Outcomes Assessments; Patient Self-Report; Patients; Pattern; Population; Relative (related person); Reporting; Research; Research Project Grants; Residual state; Risk Factors; Role; Self Efficacy; Severities; Shapes; Social Network; Social support; Spastic Dysphonias; Speech; Speech Disorders; Speech Intelligibility; Speech-Language Pathology; Stroke; Testing; Time; United States National Institutes of Health; Voice; Voice Disorders; Voice Quality; base; biopsychosocial; clinical practice; clinically significant; demographics; disability; experience; improved; innovation; instrument; meetings; model development; outcome forecast; programs; psychosocial; public health relevance; response; social; standard care; theories; tool; vocal cord

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.

描述（由申请人提供）：沟通对于我们的大多数日常活动至关重要。 “沟通参与”一词是指我们生活角色的沟通方面的实现，包括就业、家庭管理和人际关系。患有慢性言语或声音障碍的成年人在交流参与方面常常面临严重限制。传统上，言语病理学家 (SLP) 遵循大多数医疗保健学科的模式，试图通过治疗损伤/活动限制（言语清晰度/语音质量）来减轻残疾。尽管许多基于障碍/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，标准干预措施往往无法使言语功能恢复正常，许多人留下了长期的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社会现象，其参与受到许多社会和环境变量以及身体损伤的影响。随着这种概念的转变，言语病理学领域的一些团体主张采取更加“以参与为中心”的干预措施来解决参与障碍、环境和个人障碍。有很多疑问；然而，关于标准干预措施如何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，以及以参与为中心的干预措施中应包含哪些变量，以便为客户产生最有意义的结果。该领域缺乏有效和可靠的工具来衡量参与结果，这严重限制了指导研究和临床方向的参与实证模型的发展。该团队开发了一种用于交流参与的自我报告结果衡量标准——交流参与项目库（CPIB），该项目已在五个运动语音/声音人群中得到验证。 CPIB 借鉴了 NIH PROMIS（患者报告结果测量信息系统）计划实施的方法，包括使用项目响应理论 (IRT) 和自适应测试来最大限度地提高仪器的相关性、精度和可访问性。利用这些新的测量功能，这项纵向研究将接受已知可改善言语/声音功能的标准治疗的群体与患有稳定疾病的慢性群体的交流参与变化进行了比较。将测量身体（言语严重程度、疲劳、抑郁、健康）、环境（社会支持、社交网络）和个人（人口、言语需求、自我效能）变量，以确定影响参与结果的关键机制。该项目包括四种言语/声音障碍（帕金森病引起的构音障碍、单侧声带不动、痉挛性发声障碍和中风引起的运动性言语障碍；n=175），以研究未来针对各种言语/声音障碍的以参与为中心的干预措施的变量。