Department of Neurology, Maastricht University Medical Centre, Maastricht, The Netherlands.
Department of Neurology, St. Elisabeth hospital, Willemstad, Curaçao.
J Neurol Neurosurg Psychiatry. 2018 Mar;89(3):256-262. doi: 10.1136/jnnp-2017-316634. Epub 2017 Oct 6.
No consensus exists which quality of life (QoL) measure should be used in patients with inflammatory neuropathies. Moreover, most QoL measures are ordinal-based scales with their known deficiencies.
To establish a new disease-specific interval-based QoL questionnaire in inflammatory neuropathies (IN-QoL) using the Rasch model and evaluate its scientific properties (validity, reliability and responsiveness).
264 patients with inflammatory neuropathies completed six commonly used QoL questionnaires. The obtained data were stacked and subjected to Rasch analysis. Responsiveness was determined by using the concept of minimum clinically important differences related to varying individually obtained SEs (responsiveness definition: MCID-SE≥1.96 after 1-year follow-up compared with baseline).
The IN-QoL fulfilled all Rasch's model requirements with high internal reliability values (patient separation index of 0.94), except being multidimensional. Additional factor analysis resulted in two (functional and mental) subsets that were unidimensional on their own. The IN-QoL showed good correlation with the EuroQol-health quality visual analogue scale (EQ-VAS) (Spearman's rho 0.72). It demonstrated acceptable responsiveness in patients with Guillain-Barré syndrome (GBS) and chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), as did the EQ-VAS. In patients with monoclonal gammopathy-related neuropathy and multifocal motor neuropathy, hardly any changes were seen over time.
The IN-QoL questionnaire fulfils modern clinimetric requirements and correlates strongly with a patient's self-assessment of their own quality of health, while also showing responsiveness in patients with GBS and CIDP. We propose using the IN-QoL and the EQ-VAS for assessing the QoL of patients with inflammatory neuropathies in future studies.
目前在炎性神经病患者中，尚无共识认为哪种生活质量（QoL）测量应该使用。此外，大多数 QoL 测量都是基于有序尺度的，具有其已知的缺陷。
使用 Rasch 模型建立一种新的炎性神经病特异性区间 QoL 问卷（IN-QoL），并评估其科学特性（有效性、可靠性和反应性）。
264 例炎性神经病患者完成了 6 种常用 QoL 问卷。将获得的数据堆叠并进行 Rasch 分析。通过使用与个体获得的 SE 相关的最小临床重要差异的概念来确定反应性（1 年后随访与基线相比，定义为 MCID-SE≥1.96）。
IN-QoL 除了多维性之外，满足 Rasch 模型的所有要求，具有较高的内部可靠性值（患者分离指数为 0.94）。进一步的因子分析导致两个（功能和心理）子集具有自身的一维性。IN-QoL 与欧洲五维健康量表健康质量视觉模拟量表（EQ-VAS）具有良好的相关性（Spearman 相关系数为 0.72）。在吉兰-巴雷综合征（GBS）和慢性炎性脱髓鞘性多发性神经病（CIDP）患者中，IN-QoL 表现出可接受的反应性，EQ-VAS 也是如此。在单克隆丙种球蛋白相关神经病和多发性运动神经病患者中，几乎没有任何变化。
IN-QoL 问卷满足现代临床计量学要求，与患者自身健康状况的自我评估密切相关，同时在 GBS 和 CIDP 患者中也表现出反应性。我们建议在未来的研究中使用 IN-QoL 和 EQ-VAS 来评估炎性神经病患者的 QoL。
