Department of Medicine, University of Washington, Seattle, WA, United States of America.
School of Health Sciences, University of Tasmania, Launceston, Australia.
PLoS One. 2024 Sep 12;19(9):e0301652. doi: 10.1371/journal.pone.0301652. eCollection 2024.
This study protocol describes the development of the first instrument of functional communication for people living with primary progressive aphasia (PPA), with future applications to other progressive conditions, with expert validation, item-level reliability analyses, input from partners in research, and outcomes. Progressive conditions like PPA require monitoring, and as such, re-assessment. Re-assessment poses the high risk of being burdensome, destructive, and of little use to the patient. As such, there is a significant need to establish a validated and reliable measure that (1) poses minimal patient burden and (2) captures communication ability in a strengths-based manner for both clinical and research purposes. A strengths-based approach to assessment is widely recognized as the optimal way to promote patient autonomy, minimize harm, and implement functional treatment protocols and strategies. To date, there are no strengths-based assessment tools that were developed for people living with PPA nor ways to efficiently document functional communication performance. This study protocol outlines our work to address this gap in clinical practice and research.
本研究方案描述了为原发性进行性失语症（PPA）患者开发的第一个功能性沟通工具，未来可应用于其他进行性疾病，并经过专家验证、项目级可靠性分析、研究合作伙伴的投入和结果评估。像 PPA 这样的进行性疾病需要监测，因此需要重新评估。重新评估存在很大的负担、破坏性和对患者几乎没有用处的风险。因此，非常有必要建立一个经过验证和可靠的衡量标准，(1) 对患者造成最小的负担，(2) 以基于优势的方式捕捉沟通能力，无论是出于临床还是研究目的。基于优势的评估方法被广泛认为是促进患者自主性、最小化伤害以及实施功能治疗方案和策略的最佳方式。迄今为止，尚无针对 PPA 患者开发的基于优势的评估工具，也没有有效记录功能沟通表现的方法。本研究方案概述了我们为解决这一临床实践和研究差距所做的工作。
