Akademia Wychowania Fizycznego im. J. Kukuczki w Katowicach, ul. Mikołowska 72b, 40-065 Katowice.
Neurol Neurochir Pol. 2012 Sep-Oct;46(5):472-9. doi: 10.5114/ninp.2012.31358.
Multiple sclerosis (MS) is the second most common cause of disability among nervous system diseases. This disease causes reduced quality of life of patients and those caring for them. Quality of life (QoL) measures consist of at least three broad domains: physical, mental and social. In the field of medicine, researchers have often used the concept of health-related quality of life, which specifically focuses on the impact of an illness and/or treatment on patients' perception of their status of health and on subjective well-being or satisfaction with life. Subjective factors of QoL in MS patients include perception of symptoms, level of fitness, self-image, satisfaction with family life, work, the economic situation, interaction with other people, social support and life in general. Objective factors include the clinical picture of disease, social status, social and living conditions and the number and intensity of social contacts. While many generic and specific questionnaires have been developed to assess QoL in patients with MS, including general fatigue, there is a lack of specific questionnaires assessing QoL of caregivers. In this paper, a review of selected studies on QoL and caregiver burden in MS and a summary of the most popular questionnaires measuring burden and QoL are presented. Special attention is paid to the first questionnaire specific for QoL of carers of persons with MS, CAREQOL-MS by Benito-León et al.
多发性硬化症(MS)是神经系统疾病中第二大致残原因。这种疾病降低了患者及其护理人员的生活质量。生活质量(QoL)评估至少包括三个广泛的领域:身体、心理和社会。在医学领域,研究人员经常使用健康相关生活质量的概念,该概念特别关注疾病和/或治疗对患者健康状况感知以及主观幸福感或生活满意度的影响。MS 患者生活质量的主观因素包括对症状的感知、健康水平、自我形象、对家庭生活、工作、经济状况、与他人的互动、社会支持和生活总体的满意度。客观因素包括疾病的临床特征、社会地位、社会和生活条件以及社会接触的数量和强度。虽然已经开发了许多用于评估 MS 患者生活质量的通用和特定问卷,包括一般疲劳,但缺乏专门评估护理人员生活质量的问卷。本文综述了关于 MS 患者生活质量和护理人员负担的选定研究,并总结了评估负担和生活质量的最流行问卷。特别关注由 Benito-León 等人开发的第一个专门用于评估 MS 患者护理人员生活质量的问卷 CAREQOL-MS。