Baris Muhammed, Celik Halil Ibrahim, Karaduman Aynur Ayse
Faculty of Health Sciences, Department of Physiotherapy and Rehabilitation, Hasan Kalyoncu University, Gaziantep, Turkey.
Bilge Çocuk Special Education and Rehabilitation Center, Ankara, Turkey.
Neurol Sci. 2025 May 14. doi: 10.1007/s10072-025-08225-4.
This study aimed to investigate the feasibility and reliability of the six assessment tools commonly used in limb-girdle muscular dystrophy (LGMD) for patient-led asynchronous method: Brooke Scale, Vignos Scale, Fatigue Severity Scale (FSS), Numeric Rating Scale for Pain (NRS-Pain), Modified Barthel Index (MBI), and Nottingham Health Profile (NHP).
This study included 40 individuals with LGMD (55% female; mean age = 30.53 ± 9.68 years). The assessment tools used in the study were initially completed by the participants using the patient-led asynchronous method and one week later using the clinician-led synchronous method. Google Forms was utilized for the patient-led asynchronous method, and ZoomTM was used for the clinician-led synchronous method. Furthermore, a questionnaire created by the researchers was administered to assess the satisfaction and usefulness of the procedures of both tele-assessment methods.
There was no significant difference between the total scores of the six assessment tools obtained by both methods (p's > 0.05). Intraclass correlation coefficients (ICC) exhibited excellent reliability for the total scores of the FSS (ICC = 0.91), MBI (ICC = 0.92), and NHP (ICC = 0.87). Weighted kappa (κw) showed excellent reliability for the Brooke Scale (κw = 0.94) and Vignos Scale (κw = 0.94), and good reliability for the NRS-Pain (κw = 0.63). The questionnaire conducted on the satisfaction and usefulness of the procedure of tele-assessment methods showed significantly greater overall satisfaction with the clinician-led synchronous method (p = 0.009).
In individuals with LGMD, the six assessment tools were feasible and reliable when utilized with the patient-led asynchronous method.
本研究旨在探讨肢体带型肌营养不良症（LGMD）常用的六种评估工具用于患者主导的异步评估方法的可行性和可靠性，这六种工具分别是布鲁克量表、维格诺斯量表、疲劳严重程度量表（FSS）、疼痛数字评定量表（NRS - 疼痛）、改良巴氏指数（MBI）和诺丁汉健康量表（NHP）。
本研究纳入了40例LGMD患者（55%为女性；平均年龄 = 30.53 ± 9.68岁）。研究中使用的评估工具最初由参与者采用患者主导的异步方法完成，一周后采用临床医生主导的同步方法完成。患者主导的异步方法使用谷歌表单，临床医生主导的同步方法使用ZoomTM。此外，还发放了研究人员编制的问卷，以评估两种远程评估方法程序的满意度和有用性。
两种方法获得的六种评估工具总分之间无显著差异（p值>0.05）。组内相关系数（ICC）显示FSS总分（ICC = 0.91）、MBI总分（ICC = 0.92）和NHP总分（ICC = 0.87）具有极好的可靠性。加权kappa（κw）显示布鲁克量表（κw = 0.94）和维格诺斯量表（κw = 0.94）具有极好的可靠性，NRS - 疼痛量表（κw = 0.63）具有良好的可靠性。关于远程评估方法程序满意度和有用性的问卷显示，对临床医生主导的同步方法的总体满意度显著更高（p = 0.009）。
在LGMD患者中，六种评估工具采用患者主导的异步方法使用时是可行且可靠的。
