Tools for assessing quality of life in people with stroke-induced aphasia: a literature review.

ABSTRACT

BACKGROUND: 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. SUMMARY: 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 analysed. Notably, ALA emerged as the most suitable tool for assessing QOL in PWA due to its alignment with the desired features. KEY MESSAGES 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.