PDF(Pubmed)
Abstract：
BACKGROUND: The term primary progressive aphasia (PPA) describes a group of language-led dementias. Disease-modifying treatments that delay, slow or reverse progression of PPA are currently lacking, though a number of interventions to manage the symptoms of PPA have been developed in recent years. Unfortunately, studies exploring the effectiveness of these interventions have used a variety of different outcome measures, limiting comparability. There are more constructs, apart from word retrieval, that are important for people with PPA that have not received much attention in the research literature. Existing core outcome sets (COS) for dementia and non-progressive aphasia do not meet the needs of people with PPA, highlighting a need to develop a specific COS for PPA.
METHODS: This protocol describes a three-stage study to identify a COS for PPA interventions in research and clinical practice. The stage 1 systematic review will identify existing speech, language and communication measures used to examine the effectiveness of interventions for PPA in the research literature. Employing a nominal group technique, stage 2 will identify the most important outcomes for people with PPA and their families. The data collected in stages 1 and 2 will be jointly analysed with the project PPI group and will inform the stage 2 modified Delphi consensus study to identify a core outcome measurement set for PPA among a range of research disciplines undertaking intervention studies for people with PPA.
BACKGROUND: Ethical approval for stage 2 of the study has been sought individually in each country at collaborating institutions and is stated in detail in the manuscript. Stage 3 has been granted ethical approval by the Chairs of UCL Language and Cognition Department Ethics, Project ID LCD-2023-06. Work undertaken at stages 1, 2 and 3 will be published in open-access peer-reviewed journal articles and presented at international scientific conferences.
UNASSIGNED: CRD42022367565.
METHODS: This protocol describes a three-stage study to identify a COS for PPA interventions in research and clinical practice. The stage 1 systematic review will identify existing speech, language and communication measures used to examine the effectiveness of interventions for PPA in the research literature. Employing a nominal group technique, stage 2 will identify the most important outcomes for people with PPA and their families. The data collected in stages 1 and 2 will be jointly analysed with the project PPI group and will inform the stage 2 modified Delphi consensus study to identify a core outcome measurement set for PPA among a range of research disciplines undertaking intervention studies for people with PPA.
BACKGROUND: Ethical approval for stage 2 of the study has been sought individually in each country at collaborating institutions and is stated in detail in the manuscript. Stage 3 has been granted ethical approval by the Chairs of UCL Language and Cognition Department Ethics, Project ID LCD-2023-06. Work undertaken at stages 1, 2 and 3 will be published in open-access peer-reviewed journal articles and presented at international scientific conferences.
UNASSIGNED: CRD42022367565.
摘要：
背景：术语原发性进行性失语症（PPA）描述了一组以语言为主导的痴呆。延缓疾病的治疗，目前缺乏缓慢或逆转的PPA进展，尽管近年来已经开发了许多治疗PPA症状的干预措施。不幸的是,探索这些干预措施有效性的研究使用了各种不同的结果衡量标准，限制可比性。有更多的结构，除了单词检索，这对于在研究文献中没有受到太多关注的PPA患者来说很重要。现有的痴呆和非进行性失语症的核心结果集（COS）不能满足PPA患者的需求。强调需要为PPA开发特定的COS。
方法：该方案描述了一项三阶段研究，以确定在研究和临床实践中用于PPA干预的COS。第一阶段系统审查将确定现有的演讲，在研究文献中用于检查PPA干预措施有效性的语言和沟通措施。采用名义分组技术，阶段2将确定PPA患者及其家人的最重要结果。在第1阶段和第2阶段收集的数据将与项目PPI小组联合分析，并将告知第2阶段修改的德尔菲共识研究，以在一系列研究学科中确定PPA的核心结果测量集，这些研究学科为PPA患者进行干预研究。
背景：已在每个国家的合作机构中分别寻求研究第二阶段的伦理批准，并在手稿中进行了详细说明。第3阶段已获得UCL语言和认知部伦理委员会主席的伦理批准，项目IDLCD-2023-06。在第1、第2和第3阶段开展的工作将在开放获取同行评审的期刊文章中发表，并在国际科学会议上发表。
■CRD42022367565。
方法：该方案描述了一项三阶段研究，以确定在研究和临床实践中用于PPA干预的COS。第一阶段系统审查将确定现有的演讲，在研究文献中用于检查PPA干预措施有效性的语言和沟通措施。采用名义分组技术，阶段2将确定PPA患者及其家人的最重要结果。在第1阶段和第2阶段收集的数据将与项目PPI小组联合分析，并将告知第2阶段修改的德尔菲共识研究，以在一系列研究学科中确定PPA的核心结果测量集，这些研究学科为PPA患者进行干预研究。
背景：已在每个国家的合作机构中分别寻求研究第二阶段的伦理批准，并在手稿中进行了详细说明。第3阶段已获得UCL语言和认知部伦理委员会主席的伦理批准，项目IDLCD-2023-06。在第1、第2和第3阶段开展的工作将在开放获取同行评审的期刊文章中发表，并在国际科学会议上发表。
■CRD42022367565。
