Syed Maryam J, Shah Zara, Awan Safia, Wasay Mohammad, Fredrikson Sten
Wayne State University School of Medicine, Department of Neurology, Detroit, MI, USA.
Aga Khan University, Department of Neurology, Karachi, Pakistan.
Mult Scler Relat Disord. 2021 Feb;48:102684. doi: 10.1016/j.msard.2020.102684. Epub 2020 Dec 9.
Expanded Disability Status Scale (EDSS) is a commonly used tool to assess the extent of functional impairment in multiple sclerosis (MS) patients for clinical and research purposes. EDSS is traditionally conducted in a face-to-face setting, however, routine in-person EDSS assessments are often difficult to perform in developing countries due to the various reasons patients are unable to access healthcare and maintain clinic visits. Hence validating a locally translated telephone-based EDSS (T-EDSS) could be potentially useful to both physicians and patients by removing the need to commute to healthcare centers for disability assessment and could lead to overall improved care for MS patients.
Firstly, the EDSS scale was translated and culturally adapted into Urdu. On enrolment, EDSS was conducted during scheduled clinic visits and forty-seven subjects with MS were henceforth included in the study. Same patients were contacted via telephone following two weeks by a different neurologist to carry out the telephone-EDSS assessment. The patients' baseline EDSS scores at enrolment were blinded to prevent interviewer bias.
Kappa value for agreement between the two assessments for EDSS scores of more than 6 was 0.73, whereas the kappa value for EDSS score of less than 4.5 was 0.35. The intraclass correlation coefficient (ICC) for T-EDSS score < 4.5 was 1.7, and for a score > 4.5 was 4.9, with the overall ICC being 0.64. Cronbach's alpha value for T-EDSS score < 4.5 was 0.59 and for the score > 4.5 was 0.79.
This study shows that there exists a positive correlation and substantial level of agreement between in-person EDSS and T-EDSS, especially in MS patients with higher baseline EDSS scores. Hence a locally translated T-EDSS can be used in Pakistani MS patients with reasonable confidence. T-EDSS may be more useful in MS patients with moderate to severe disability.
扩展残疾状态量表（EDSS）是一种常用工具，用于临床和研究目的，评估多发性硬化症（MS）患者的功能损害程度。传统上，EDSS是在面对面的环境中进行的，然而，由于患者无法获得医疗保健和维持门诊就诊的各种原因，在发展中国家进行常规的面对面EDSS评估往往很困难。因此，验证一种本地翻译的基于电话的EDSS（T-EDSS）可能对医生和患者都有潜在的用处，因为这样无需前往医疗中心进行残疾评估，并且可以全面改善对MS患者的护理。
首先，将EDSS量表翻译成乌尔都语并进行文化调适。入组时，在预定的门诊就诊期间进行EDSS评估，47名MS患者随后被纳入研究。两周后，由另一位神经科医生通过电话联系相同的患者进行电话EDSS评估。患者入组时的基线EDSS评分是保密的，以防止访谈者偏差。
EDSS评分大于6时，两种评估之间的一致性kappa值为0.73，而EDSS评分小于4.5时，kappa值为0.35。T-EDSS评分<4.5时的组内相关系数（ICC）为1.7，评分>4.5时为4.9，总体ICC为0.64。T-EDSS评分<4.5时的Cronbach's alpha值为0.59，评分>4.5时为0.79。
本研究表明，面对面EDSS和T-EDSS之间存在正相关和较高程度的一致性，特别是在基线EDSS评分较高的MS患者中。因此，可以合理地信任在巴基斯坦MS患者中使用本地翻译的T-EDSS。T-EDSS在中度至重度残疾的MS患者中可能更有用。
