PURPOSE People who have complex communication needs (CCN), and who use augmentative and alternative communication (AAC) to help them express themselves, can be difficult to engage in decision making about their healthcare. The purpose of this review was to identify what patient-reported outcome measures (PROMs) have been employed with people who use AAC. Of the tools identified, the review aimed to establish what conceptual frameworks were used and how the reports describe completion of the PROM. METHODS A systematic literature review was carried out. A pre-defined set of search terms was entered into five main health and education databases. Titles and abstracts were sifted for relevance. Full text papers were screened against inclusion/exclusion criteria. Data pertaining to the type and nature of the PROM used was extracted. Complementary data sources were analysed to construct a narrative synthesis of the papers identified. RESULTS Within 15 papers that met the review criteria, 25 PROMs were used with people who rely on AAC comprising of 15 separate measures. The conceptual frameworks for 12 of these tools were reported from which 62 items, or concepts being measured, were identified. Following synthesis of these items, 9 conceptual domains and 11 sub-domains were generated. Limited information was available about who completed the PROM nor how much, if any, support they received. CONCLUSIONS No PROM that has been developed specifically for people who use AAC was identified by this review. Of the tools that have been used with people who use AAC, the concepts measured were broad and varied. The quality of reporting concerning who completed the PROM was limited, undermining the trustworthiness of many of the studies.

中文翻译：

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评估在补充性和替代性交流（AAC）用户中记录患者报告结果的工具的质量：系统评价。

目的具有复杂的沟通需求（CCN）并使用补充性和替代性沟通（AAC）来帮助他们表达自己的人，可能很难做出有关其医疗保健的决策。这项审查的目的是确定对使用AAC的患者采用了哪些患者报告的结局指标（PROM）。在确定的工具中，审查旨在确定使用了哪些概念框架以及报告如何描述PROM的完成。方法进行了系统的文献综述。将一组预定义的搜索词输入到五个主要的健康和教育数据库中。标题和摘要经过筛选，以确保相关性。根据纳入/排除标准筛选了全文论文。提取与所使用的PROM的类型和性质有关的数据。分析补充数据源以构建所鉴定论文的叙述性综合。结果在符合审查标准的15篇论文中，有25项PROM被用于依赖AAC的人员，其中包括15项单独的措施。报告了其中12种工具的概念框架，从中确定了62项或正在衡量的概念。在综合这些项目之后，生成了9个概念域和11个子域。关于谁完成了PROM或获得多少支持（如果有的话）的信息有限。结论该评价未发现专门为使用AAC的人开发的PROM。在使用AAC的人员使用的工具中，所测量的概念广泛而多样。关于谁完成了PROM的报告质量有限，