Introduction

Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) is a basic tool for monitoring disease progression in amyotrophic lateral sclerosis (ALS). This study analyses the reliability of the Polish version of the ALSFRS-R as a tool to assess the health condition of patients with ALS and presents experience related to the use of this tool in monitoring the effects of experimental medical therapy.

Materials and methods

The scale questionnaire was translated using the cross-translation method. The final tool was used by researcher, who was conducting the interview directly by telephone with patients and their caregivers and additionally compared with neurologopedic measurement. The health status of 60 patients was assessed between 4 and 7 times, which gives a total of 327 observations. Mean patient’s age was 57.5 ± 8.6. The division by sex was 23/35 (female/male). Patients’ health status and severity of symptoms varied. Statistical analysis was performed using explanatory factor analysis and Cronbach’s alpha.

Result

Validation of the Polish version of the ALSFRS-R supports the reliability and internal consistency of scale. The scale proved also to be a proper tool for monitoring the course of the experimental medical therapy for patients with ALS. However, a qualitative evaluation revealed certain weaknesses of the scale, resulting from a different understanding of the functional assessment by the patient and by the medical specialist and cultural differences.

Discussion

Although ALSFRS-R is a reliable enough for monitoring patient health, it seems reasonable to pay attention to some difficult points of the questionnaire and its improvement.

中文翻译：

---

波兰修订的肌萎缩侧索硬化功能评定量表的验证及其在医学实验条件下的可靠性。

介绍

肌萎缩侧索硬化症功能评定量表修订版 (ALSFRS-R) 是监测肌萎缩侧索硬化症 (ALS) 疾病进展的基本工具。本研究分析了波兰版 ALSFRS-R 作为评估 ALS 患者健康状况的工具的可靠性，并介绍了使用该工具监测实验性药物治疗效果的相关经验。

材料和方法

量表问卷采用交叉翻译法进行翻译。研究人员使用了最后一个工具，他们直接通过电话与患者及其护理人员进行访谈，并与神经外科测量进行了比较。对 60 名患者的健康状况进行了 4 至 7 次评估，共获得 327 次观察结果。平均患者年龄为 57.5 ± 8.6。按性别划分的比例为 23/35（女性/男性）。患者的健康状况和症状的严重程度各不相同。使用解释性因素分析和 Cronbach's α 进行统计分析。

结果

ALSFRS-R 波兰语版本的验证支持量表的可靠性和内部一致性。该量表也被证明是监测 ALS 患者实验性药物治疗过程的合适工具。然而，定性评估揭示了量表的某些弱点，这是由于患者和医学专家对功能评估的不同理解和文化差异造成的。

讨论

虽然 ALSFRS-R 在监测患者健康方面足够可靠，但关注问卷的一些难点及其改进似乎是合理的。