肌萎缩侧索硬化患者电话功能量表的评价

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目的设计一种电话随访量表,与现行临床常用的Appel肌萎缩侧索硬化量表(AALSS)进行比较分析,测定效度和信度。方法选择年龄及性别匹配的肌萎缩侧索硬化患者31例及正常对照30例,全部患者均符合国际神经病学联盟诊断标准。采用新设计的肌萎缩侧索硬化电话功能量表(PIALSS),共13个问题,分别测定延髓、颈段、胸段、腰段脊髓功能。所有分值相加范围30~181分,分值越高表明功能障碍程度越重,总分超过30分定义为运动功能障碍。结果肌萎缩侧索硬化患者组和正常对照组的性别构成比、年龄差异均无统计学意义,AALSS和PIALSS评分的差异有统计学意义。两次电话访问的重测信度和不同评定员之间的重测信度相关系数分别为0.985和0.984(P<0.01)。对13个子项目进行内部信度一致性检验显示内在一致性良好(κ值=0.938)。将所有项目和因素做相关分析,每个因素的内部一致性系数均大于该因素与其他因素的相关系数。将PIALSS与AALSS总分做ROC曲线显示,AALSS对运动障碍的区分效度略优于PIALSS(P<0.01)。PIALSS与面访有较好的相关一致性。除延髓及胸段脊髓功能外,各部分功能评价的相关系数均>0.9。PIALSS还显示了较好的重测信度,其中时间重测信度和评定员重测信度都达到了实地应用要求。结论 PIALSS作为知情者量表,即便患者因功能丧失导致不能使用电话也不受到影响。因此,可以作为随访评判ALS患者病情及疗效的重要工具。 Objective To design a telephone follow-up scale and compare it with the currently available Aalys Appel amyotrophic lateral sclerosis scale (AALSS) to measure the validity and reliability. Methods A total of 31 patients with amyotrophic lateral sclerosis and 30 normal controls were selected according to age and gender. All patients met the diagnostic criteria of the International Neurological Union. The newly designed amyotrophic lateral sclerosis phone function scale (PIALSS), a total of 13 questions, were measured medulla, cervical, thoracic, lumbar spinal cord function. All scores add up to 30 to 181 points, the higher the score indicates that the more severe dysfunction, the total score of more than 30 points is defined as motor dysfunction. Results There was no significant difference in gender composition and age between patients with amyotrophic lateral sclerosis and normal controls, and there was significant difference between AALSS and PIALSS scores. The correlation coefficients of test-retest reliability and test-retest reliability between two phone calls were 0.985 and 0.984, respectively (P <0.01). An internal consistency test of 13 subprojects showed good internal consistency (κ = 0.938). The correlation analysis of all the items and factors, the internal consistency coefficient of each factor is greater than the factor and other factors correlation coefficient. The ROC curve of PIALSS and AALSS scores showed that AALSS had a slightly better discriminative validity than PIALSS for dyskinesia (P <0.01). PIALSS has good correlation with interview. In addition to the medulla oblongata and thoracic spinal cord function, the correlation coefficient of each part function evaluation was> 0.9. PIALSS also showed good retest reliability, in which time retest reliability and retest retest reliability have reached the field application requirements. Conclusions PIALSS, an informant’s scale, is not affected even if the patient is unable to access the phone due to loss of function. Therefore, it can be used as a follow-up evaluation of ALS patients with an important tool and efficacy.
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