Bužgová Radka, Kozáková Radka, Zeleníková Renáta, Sikorová Lucie
Cas Lek Cesk. 2018 Spring;157(1):41-45.
In patients with amyotrophic lateral sclerosis (ALS), it is advisable to provide multidisciplinary care, due to rapid progression and specific disease symptoms, in order to maintain the best quality of life for the patient and their family. Abroad, questionnaires and scales are used to assess the patient´s health condition, to determine disease progression, followed by the provision of personalized care. The aim of this review article is to describe and analyze the scales used in evaluating ALS patients in both functional and psychosocial areas. Having searched in electronic databases, 14 scales for patients with ALS or motor neuron disease were found, and 4 scales for patients with chronic diseases, which are appropriate and used also in patients with ALS. The ALSFRS scale (The Amyotrophic Lateral Sclerosis Functional Rating Scale) is most often used for assessment of functional status. All areas of care are best covered in the ALSSQOL-R (Amyotrophic Lateral Sclerosis Specific Quality of life) questionnaire, designed for assessment of quality of life. The use of both scales is recommended in clinical practice and research.
在肌萎缩侧索硬化症(ALS)患者中,鉴于疾病进展迅速且有特定症状,提供多学科护理有助于为患者及其家人维持最佳生活质量。在国外,人们使用问卷和量表来评估患者的健康状况、确定疾病进展情况,进而提供个性化护理。这篇综述文章的目的是描述和分析用于评估ALS患者功能和心理社会领域的量表。通过在电子数据库中检索,发现了14个适用于ALS或运动神经元疾病患者的量表,以及4个适用于慢性病患者且也用于ALS患者的量表。ALSFRS量表(肌萎缩侧索硬化症功能评定量表)最常用于评估功能状态。ALSSQOL-R问卷(肌萎缩侧索硬化症特定生活质量问卷)专为评估生活质量而设计,能最好地涵盖所有护理领域。临床实践和研究中建议同时使用这两个量表。