Babaei Zahra, Yadegari Fariba
Social Determinants of Health Research Centre, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran,
Speech Therapy Department, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran,
Folia Phoniatr Logop. 2024 Sep 12:1-19. doi: 10.1159/000541400.
The quality of life (QOL) of individuals with stroke-induced aphasia is significantly impacted by the condition. Clinicians and researchers are increasingly focusing on QOL assessments for people with aphasia (PWA) to gauge the effects of aphasia and the effectiveness of interventions. While several QOL assessment tools are utilized for PWA, there is limited literature comparing and evaluating their suitability for this population. This review aimed to explore the QOL measurement tools used with PWA, their aphasia-friendly characteristics, their applicability to severe aphasia, and the technical aspects of these questionnaires.
The review process involved two stages. Initially, a search was conducted to identify the tools used for assessing the QOL of PWA in studies published between 1975 and 2022. Various databases such as Google Scholar, PubMed, Scopus, and Web of Science were searched using specific keywords related to stroke, aphasia, QOL, questionnaires, outcome measurements, tools, scales, and instruments. Subsequently, hand searching was employed to gather additional information on the identified tools, including technical properties, communication and language domains, and crucial factors for QOL assessment in PWA. Results revealed that 28 articles met the inclusion criteria, identifying 26 tools for QOL assessment in PWA, comprising 11 generic, 9 stroke-specific, and 6 aphasia-specific tools. Technical details such as research country distribution, publication years (ranging from 1972 to 2015), completion time, administration methods (self-reporting), item formats (question or statement), response types (all tools, except SIP-136, NHP, and SA-SIP30 used Likert type scale for ratings), scoring methods (sum of score or using an algorithm), translation/adaptation status (EQ-5D-3L among generic tools, SIS-16 among stroke-specific questionnaires, and SAQOL-39 among aphasia-specific instruments received the most amount of translation/adaptation), respondent characteristics (almost all the tools except aphasia-specific tests excluded people with severe aphasia), number of dimensions (ranged 1-12), item numbers [6-136], and coverage of communication/language domains (BOSS, CDP, ALA, AIQ-21 covered all language domains) were analyzed. Notably, ALA emerged as the most suitable tool for assessing QOL in PWA due to its alignment with the desired features.
Based on the review findings, clinicians and researchers are advised to prioritize the following features when selecting a QOL questionnaire for PWA: aphasia-specific and aphasia-friendly design, comprehensive coverage of QOL dimensions, inclusion of all language domains, and provision of self-reporting opportunities for PWA across all severity levels. ALA stands out as the preferred tool for QOL assessment in PWA based on its adherence to these criteria.
中风所致失语症患者的生活质量受到该病症的显著影响。临床医生和研究人员越来越关注失语症患者的生活质量评估,以衡量失语症的影响及干预措施的有效性。虽然有几种生活质量评估工具用于失语症患者,但比较和评估这些工具对该人群适用性的文献有限。本综述旨在探讨用于失语症患者的生活质量测量工具、其失语友好型特征、对严重失语症的适用性以及这些问卷的技术方面。
综述过程包括两个阶段。首先,进行检索以确定1975年至2022年发表的研究中用于评估失语症患者生活质量的工具。使用与中风、失语症、生活质量、问卷、结局测量、工具、量表和仪器相关的特定关键词搜索了各种数据库,如谷歌学术、PubMed、Scopus和科学网。随后,通过手工检索收集关于已识别工具的更多信息,包括技术特性、沟通和语言领域以及失语症患者生活质量评估的关键因素。结果显示,28篇文章符合纳入标准,确定了26种用于失语症患者生活质量评估的工具,包括11种通用工具、9种中风特异性工具和6种失语症特异性工具。分析了技术细节,如研究国家分布、发表年份(从1972年到2015年)、完成时间、施测方法(自我报告)、项目格式(问题或陈述)、反应类型(除SIP - 136、NHP和SA - SIP30外,所有工具均使用李克特量表进行评分)、计分方法(分数总和或使用算法)、翻译/改编状态(通用工具中的EQ - 5D - 3L、中风特异性问卷中的SIS - 16以及失语症特异性工具中的SAQOL - 39接受的翻译/改编最多)、受访者特征(除失语症特异性测试外,几乎所有工具都排除了严重失语症患者)、维度数量(范围为1 - 12)、项目数量[6 - 136]以及沟通/语言领域的覆盖情况(BOSS、CDP、ALA、AIQ - 21涵盖了所有语言领域)。值得注意的是,ALA因其符合所需特征而成为评估失语症患者生活质量的最合适工具。
根据综述结果,建议临床医生和研究人员在为失语症患者选择生活质量问卷时优先考虑以下特征:失语症特异性和失语友好型设计、生活质量维度的全面覆盖、所有语言领域的纳入以及为所有严重程度的失语症患者提供自我报告机会。基于其符合这些标准,ALA成为失语症患者生活质量评估的首选工具。