Walton Centre NHS Foundation Trust, Lower Lane, Liverpool, UK; University of Liverpool, UK.
Sheffield Institute for Translational Neuroscience, Sheffield, UK.
J Neurol Sci. 2021 Feb 15;421:117285. doi: 10.1016/j.jns.2020.117285. Epub 2020 Dec 29.
The progressively disabling and terminal nature of ALS/MND imposes major coping demands on patients. We wished to improve the psychometric properties of our previously published MND-Coping Scale, so that parametric analyses were valid, and to make it simpler for patients to complete and clinicians to score.
After a new qualitative analysis of 26 patients with ALS/MND, the draft Coping Index-ALS (CI-ALS) was administered to 465 additional patients, alongside COPE-60, General Perceived Self Efficacy scale, and WHOQOL-BREF. Validity of the CI-ALS was assessed using the Rasch model. External validity was checked against comparator measures.
Thirteen centres contributed 465 patients, mean age 64.9 years (SD 10.8), mean disease duration 28.4 months (SD 37.5). The CI-ALS-Self and CI-ALS-Others both satisfied Rasch model expectations and showed invariance across age, gender, marital status and type of onset. Expected correlations were observed with comparator scales. A nomogram is available to convert the raw scores to interval level measures suitable for parametric analysis.
Coping abilities in ALS/MND can now be measured using a simple 21 item self-report measure, offering two subscales with a focus of 'coping by self ' and 'coping with others'. This allows clinicians to identify individuals with poor coping and facilitates research on interventions that may improve coping skills.
肌萎缩侧索硬化症/运动神经元病（ALS/MND）的致残性和终末期性质对患者提出了重大应对需求。我们希望改进我们之前发表的 MND 应对量表的心理计量学特性，使其参数分析有效，并使患者更容易完成，临床医生更容易评分。
在对 26 名 ALS/MND 患者进行新的定性分析后，将草稿应对指数-ALS（CI-ALS）与 COPE-60、一般自我效能感量表和 WHOQOL-BREF 一起施用于 465 名额外的患者。使用 Rasch 模型评估 CI-ALS 的有效性。通过比较措施检查外部有效性。
13 个中心贡献了 465 名患者，平均年龄 64.9 岁（标准差 10.8），平均疾病持续时间 28.4 个月（标准差 37.5）。CI-ALS-自我和 CI-ALS-他人都符合 Rasch 模型的预期，并在年龄、性别、婚姻状况和发病类型方面表现出不变性。与比较量表观察到预期的相关性。有一个图表可供将原始分数转换为适合参数分析的区间水平度量。
现在可以使用简单的 21 项自我报告量表来测量 ALS/MND 中的应对能力，提供两个侧重于“自我应对”和“与他人应对”的子量表。这使临床医生能够识别应对能力差的个体，并促进可能改善应对技能的干预措施的研究。
