Yamaguchi Takuhiro, Ohbu Sadayoshi, Saito Mari, Ito Yoichi, Moriwaka Fumio, Tashiro Kunio, Ohashi Yasuo, Fukuhara Shun-ichi
Department of Biostatisitcs, School of Health Sciences and Nursing, University of Tokyo.
No To Shinkei. 2004 Jun;56(6):483-94.
We studied validity and clinical applicability of the Japanese version of amyotrophic lateral sclerosis (ALS) assessment questionnaire 40 (ALSAQ-40). The original version contains forty questions measuring five areas (domains) of health status: Physical Mobility, ADL/Independence, Eating and Drinking, Communication and Emotional Functioning. Data were obtained from 39 ALS patients and from their physicians at 15 centers in Japan. Patients completed the ALSAQ-40 and the SF-36, and provided information on their age and their status of ventilator use. Their physicians provided information on the date of diagnosis, type of disease and clinical characteristics, and ALSFRS-R. The patients' average age was 58.5 years, and 64% were men. The mean duration since diagnosis was 39.1 months. Forty four percent were classical ALS patients and 46% were receiving a respiratory intervention. Although there was much heterogeneity, the scores for Physical Mobility and ADL/Independence were higher(indicating worse health status)than the scores for the other domains. Item-scale correlations were strong, except for the item "felt embarrassed in social situations" in the Emotional Functioning domain. All the domains had very high internal consistency: Cronbach's alphas ranged 0.95 to 0.97. With regard to the cluster structure of the forty items, the Eating and Drinking domain and the Communication clustered together. The reason might be that the former consisted of only three items and both domains measure bulbar symptoms. Domain scores correlated significantly with scores of related dimensions in the SF-36 and ALSFRS-R, and did not correlate strongly with unrelated domains. The five items of the ALSAQ-5 correlated with all five domain scores on the ALSAQ-40. These results should be interpreted with caution because we analyzed together data from ALS patients with various characteristics. In conclusion, although we may need to add and remove some items and modify the wording of others, the Japanese version of the ALSAQ-40 had high validity and is likely to be useful in evaluating of QOL in ALS patients. Whether the ALSAQ-5 can be used in place of the ALSAQ-40 is a matter for further study.
我们研究了肌萎缩侧索硬化症（ALS）评估问卷40（ALSAQ - 40）日文版的有效性和临床适用性。原始版本包含40个问题，用于测量健康状况的五个领域（维度）：身体活动能力、日常生活活动/独立性、饮食、沟通和情绪功能。数据来自日本15个中心的39例ALS患者及其医生。患者完成了ALSAQ - 40和SF - 36，并提供了他们的年龄和使用呼吸机情况的信息。他们的医生提供了诊断日期、疾病类型和临床特征以及ALSFRS - R的信息。患者的平均年龄为58.5岁，64%为男性。自诊断以来的平均病程为39.1个月。44%为经典型ALS患者，46%正在接受呼吸干预。尽管存在很大的异质性，但身体活动能力和日常生活活动/独立性领域的得分（表明健康状况较差）高于其他领域的得分。除了情绪功能领域中“在社交场合感到尴尬”这一项目外，各项目与量表的相关性都很强。所有领域都具有非常高的内部一致性：Cronbach's α系数范围为0.95至0.97。关于40个项目的聚类结构，饮食领域和沟通领域聚集在一起。原因可能是前者仅由三个项目组成，且两个领域都测量延髓症状。领域得分与SF - 36和ALSFRS - R中相关维度得分显著相关，与不相关领域没有强相关性。ALSAQ - 5中的五个项目与ALSAQ - 40上的所有五个领域得分相关。由于我们一起分析了具有各种特征的ALS患者的数据，这些结果应谨慎解释。总之，尽管我们可能需要添加和删除一些项目并修改其他项目的措辞，但ALSAQ - 40日文版具有较高的有效性，并且可能有助于评估ALS患者的生活质量。ALSAQ - 5是否可以替代ALSAQ - 40有待进一步研究。
