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首页> 外文期刊>Amyotrophic lateral sclerosis and other motor neuron disorders: Official publication of the World Federation of Neurology, Research Group on Motor Neuron Diseases >Validation of quality of life instruments in ALS
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Validation of quality of life instruments in ALS

机译：在ALS中验证生活质量工具

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BACKGROUND: Non-invasive ventilation (NIV) probably improves survival in ALS, but its effect on quality of life (QoL) is less clear. Most potentially useful QoL instruments have not been validated in this context. METHODS: We assessed the validity (multi-trait multi-method analysis), internal consistency (Cronbach's alpha), test-retest stability (intra-class correlations) and response to disease severity and NIV (effect size) of two generic instruments, the Short Form 36 (SF-36) and the General Well-being Schedule; two specific instruments, the Chronic Respiratory Disease Questionnaire (CRQ) and the Sleep Apnoea QoL Index (SAQLI), and a scale of daytime sleepiness, the Epworth Sleepiness Scale (ESS) in 23 subjects with ALS. Functional status, limb and axial muscle strength, and maximum inspiratory pressure were assessed, together with the QoL measurements, every two months. RESULTS: All instruments showed good or excellent validity, internal consistency and test-retest stability overall. Subjects without symptomatic respiratory compromise had difficulty identifying activities for the CRQ dyspnoea domain and symptoms for the SAQLI symptoms domain. Marked floor effects were observed in the physical function and role domains of the SF-36. Domains assessing sleep-related problems and mental health showed greater effect of differences in respiratory function than functional status, and the greatest response to NIV. CONCLUSIONS: Of the generic instruments the SF-36 was most useful, but limited by floor effects. Of the specific instruments, the SAQLI symptoms domain was most responsive to NIV, but this instrument took longer to complete, and several items were inappropriate. The CRQ and ESS are valid and responsive alternatives.
机译：背景：无创通气（NIV）可能会改善ALS的生存率，但其对生活质量（QoL）的影响尚不清楚。在这种情况下，尚未验证大多数潜在有用的QoL工具。方法：我们评估了两种通用仪器的有效性（多特征多方法分析），内部一致性（Cronbach's alpha），重测稳定性（类内相关性）以及对疾病严重性和NIV（效应量）的反应。简短表格36（SF-36）和总体健康时间表;慢性呼吸道疾病问卷（CRQ）和睡眠呼吸暂停QoL指数（SAQLI）这两种特定的工具，以及白天嗜睡量表，Epworth嗜睡量表（ESS）在23位ALS受试者中。每两个月评估一次功能状态，肢体和轴向肌肉力量以及最大吸气压力以及QoL测量值。结果：所有仪器均显示出良好或极佳的有效性，内部一致性和重测稳定性。没有症状性呼吸损害的受试者难以识别CRQ呼吸困难域的活动和SAQLI症状域的症状。在SF-36的物理功能和作用域中观察到明显的地板效应。评估与睡眠有关的问题和心理健康的领域显示，呼吸功能差异的影响大于功能状态，并且对NIV的反应最大。结论：在通用仪器中，SF-36最有用，但受地板效应的限制。在特定的仪器中，SAQLI症状域对NIV的响应最强，但是该仪器需要更长的时间才能完成，并且有些项目不合适。 CRQ和ESS是有效且响应迅速的替代方案。

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