Department of Health Science, Ribeirão Preto Medical School, University of São Paulo, Av. Miguel Covian, 120, Ribeirão Preto, São Paulo, 14.049-900, Brazil.
Health Qual Life Outcomes. 2024 Feb 16;22(1):18. doi: 10.1186/s12955-024-02232-3.
(1) To identify instruments used to assess quality of life (QoL) in children and adolescents with neuromuscular diseases; (2) To identify the psychometric properties contained in these instruments.
This is a scoping review in which the electronic databases Embase, Scielo, Scopus, Pubmed and Lilacs were used as well as grey literature. The following terms were used in the search for articles published in the last 10 years: children, adolescents, neuromuscular disease, and quality of life.
In total, 15 articles were included and evaluated, indicating 7 instruments used to assess QoL (PedsQL™ Inventory 3.0 Neuromuscular Module, the PedsQL™ 4.0, the PedsQL DMD Module, the PedsQL ™ MFS, the SOLE, the KIDSCREEN and the LSI-A). The number of items ranged from 17 to 45. In addition, 6 instruments showed psychometric properties, but only 2 showed good and high quality, either in internal reliability or reproducibility.
Our results were able to map the main QoL assessment instruments of children and adolescents with neuromuscular disease and the most cited instrument was the PedsQL™ Inventory 3.0 Neuromuscular Module. Larger studies that assess psychometric properties and that are validated for most diseases are needed.
(1) 确定用于评估患有神经肌肉疾病的儿童和青少年生活质量 (QoL) 的工具；(2) 确定这些工具中包含的心理测量特性。
这是一项范围综述，其中使用了 Embase、Scielo、Scopus、Pubmed 和 Lilacs 等电子数据库以及灰色文献。在搜索过去 10 年发表的文章时，使用了以下术语：儿童、青少年、神经肌肉疾病和生活质量。
共纳入并评估了 15 篇文章，表明有 7 种工具用于评估 QoL（PedsQL™Inventory 3.0 神经肌肉模块、PedsQL™4.0、PedsQL DMD 模块、PedsQL™MFS、SOLE、KIDSCREEN 和 LSI-A）。项目数量从 17 到 45 不等。此外，有 6 种工具显示出心理测量特性，但只有 2 种工具在内部可靠性或重现性方面表现出良好和高质量。
我们的结果能够绘制出患有神经肌肉疾病的儿童和青少年的主要生活质量评估工具图，引用最多的工具是 PedsQL™Inventory 3.0 神经肌肉模块。需要进行评估心理测量特性并针对大多数疾病进行验证的更大规模研究。
