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肌萎缩侧索硬化症的残疾与生活质量评估

[Handicap and quality of life evaluation in amyotrophic lateral sclerosis].

作者信息

Sancho P-O, Boisson D

机构信息

Service de Rééducation Neurologique, Hôpital Henry Gabrielle, St-Génis Laval.

出版信息

Rev Neurol (Paris). 2006 Jun;162 Spec No 2:4S205-4S207.

Abstract

The impact of amyotrophic lateral sclerosis and consequent disability on everyday life can be assessed with generic or specific and/or functional quality of life scales. Generic scales SF36, SIP (Sickness Impact Profiles) and SIP/ALS 19, SEIQoL have been validated for the assessment of quality of life in SLA. A specific scale has also been worked out and validated in this disease, the ALSAQ-40 scale. The ALSFRS (ALS Functional Rating Scale) is a tool validated to evaluate the patient's functional capacities. However, the patient's quality of life felt does not depend only on the disease course but also the patient's previous psychological profile, the environmental, social conditions and spiritual aspirations. The absence of a cognitive deficit makes the patient particularly lucid about the progressive degradation of health status. Evaluation must be carried out with individually for each patient, taking into account the social and familial environments, to appreciate real living conditions, and the impact of this degenerative disease.

摘要

肌萎缩侧索硬化症及其导致的残疾对日常生活的影响可以通过通用的、特定的和/或功能性生活质量量表进行评估。通用量表SF36、SIP(疾病影响概况)和SIP/ALS 19、SEIQoL已被验证可用于评估肌萎缩侧索硬化症患者的生活质量。针对这种疾病还制定并验证了一种特定量表,即ALSAQ - 40量表。ALSFRS(肌萎缩侧索硬化症功能评定量表)是一种经过验证的评估患者功能能力的工具。然而,患者感受到的生活质量不仅取决于疾病进程,还取决于患者先前的心理状况、环境、社会条件和精神追求。没有认知缺陷使患者对健康状况的逐渐恶化格外清醒。必须针对每个患者单独进行评估,考虑到社会和家庭环境,以了解实际生活状况以及这种退行性疾病的影响。

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