School of Physical and Occupational Therapy, McGill University, Montréal, Québec, Canada.
Centre for Interdisciplinary Research in Rehabilitation of Greater Montréal, Montréal, Québec, Canada.
J Patient Rep Outcomes. 2024 Sep 18;8(1):106. doi: 10.1186/s41687-024-00743-7.
OBJECTIVE: To systematically review the literature of existing evidence on the measurement properties of the Quality of Life in Neurological Disorders (Neuro-QoL) measurement system among neurorehabilitation populations. DATA SOURCES: The Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) guided this systematic review in which we searched nine electronic databases and registries, and hand-searched reference lists of included articles. STUDY SELECTION: Two independent reviewers screened selected articles and extracted data from 28 included studies. DATA EXTRACTION: COSMIN's approach guided extraction and synthesizing measurement properties evidence (insufficient, sufficient), and the modified GRADE approach guided synthesizing evidence quality (very-low, low, moderate, high) by diagnosis. DATA SYNTHESIS: Neuro-QoL has sufficient measurement properties when used by individuals with Huntington's disease, Multiple Sclerosis, Parkinson's disease, stroke, lupus, cognitive decline, and amyotrophic lateral sclerosis. The strongest evidence is for the first four conditions, where test-retest reliability, construct validity, and responsiveness are nearly always sufficient (GRADE: moderate-high). Structural validity is assessed only in multiple sclerosis and stroke but is often insufficient (GRADE: moderate-high). Criterion validity is sufficient in some stroke and Huntington's disease domains (GRADE: high). Item response theory analyses were reported for some stroke domains only. There is limited, mixed evidence for responsiveness and measurement error (GRADE: moderate-high), and no cross-cultural validity evidence CONCLUSIONS: Neuro-QoL domains can describe and evaluate patients with Huntington's disease, multiple sclerosis, Parkinson's disease, and stroke, but predictive validity evidence would be beneficial. In the other conditions captured in this review, a limited number of Neuro-QoL domains have evidence for descriptive use only. For these conditions, further evidence of structural validity, measurement error, cross-cultural validity and predictive validity would enhance the use and interpretation of Neuro-QoL.
目的:系统综述现有神经康复人群中神经疾病生活质量量表(Neuro-QoL)测量系统的测量特性的文献。
资料来源:本系统综述遵循共识基础的健康测量仪器选择标准(COSMIN),我们在九个电子数据库和注册处进行了搜索,并对手头参考文章的清单进行了检索。
研究选择:两名独立的审查员筛选了入选文章,并从 28 项入选研究中提取数据。
数据提取:COSMIN 的方法指导了提取和综合测量特性证据(不足、充分),并通过诊断指导了改良 GRADE 方法综合证据质量(极低、低、中、高)。
数据综合:当用于亨廷顿病、多发性硬化症、帕金森病、中风、狼疮、认知能力下降和肌萎缩侧索硬化症患者时,Neuro-QoL 具有充分的测量特性。最强的证据来自前四种疾病,其中重测信度、结构效度和反应度几乎总是充分的(GRADE:中-高度)。结构效度仅在多发性硬化症和中风中进行评估,但通常不足(GRADE:中-高度)。在一些中风和亨廷顿病领域中,标准效度是充分的(GRADE:高度)。仅在一些中风领域报告了项目反应理论分析。反应度和测量误差的证据有限且不一致(GRADE:中-高度),且没有跨文化有效性证据。
结论:Neuro-QoL 领域可以描述和评估亨廷顿病、多发性硬化症、帕金森病和中风患者,但预测有效性证据将是有益的。在本综述中涉及的其他情况下,Neuro-QoL 领域仅有有限数量的证据支持描述性使用。对于这些情况,进一步的结构效度、测量误差、跨文化有效性和预测有效性证据将增强 Neuro-QoL 的使用和解释。
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