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首页> 外文期刊>Patient Preference and Adherence >Health-related quality of life assessment in people with multiple sclerosis and their family caregivers. A multicenter study in Catalonia (Southern Europe)
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Health-related quality of life assessment in people with multiple sclerosis and their family caregivers. A multicenter study in Catalonia (Southern Europe)

机译：多发性硬化症患者及其家人的健康相关生活质量评估。加泰罗尼亚（南欧）的多中心研究

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Objectives: To measure the health-related quality of life (HRQoL) of multiple sclerosis (MS) patients and their caregivers, and to assess which factors can best describe HRQoL.Methods: A cross-sectional multicenter study of nine hospitals enrolled MS patients and their caregivers who attended outpatient clinics consecutively. The instruments used were the SF-36 for patients and the SF-12 and GHQ-12 for caregivers. Classification and regression tree analysis was used to analyze the explanatory factors of HRQoL.Results: A total of 705 patients (mean age 40.4 years, median Expanded Disability Status Scale 2.5, 77.8% with relapsing-remitting MS) and 551 caregivers (mean age 45.4 years) participated in the study. MS patients had significantly lower HRQoL than in the general population (physical SF-36: 39.9; 95% confidence interval [CI]: 39.1–40.6; mental SF-36: 44.4; 95% CI: 43.5–45.3). Caregivers also presented lower HRQoL than general population, especially in its mental domain (mental SF-12: 46.4; 95% CI: 45.5–47.3). Moreover, according to GHQ-12, 27% of caregivers presented probable psychological distress. Disability and co-morbidity in patients, and co-morbidity and employment status in caregivers, were the most important explanatory factors of their HRQoL.Conclusions: Not only the HRQoL of patients with MS, but also that of their caregivers, is indeed notably affected. Caregivers’ HRQoL is close to population of chronic illness even that the patients sample has a mild clinical severity and that caregiving role is a usual task in the study context.
机译：目的：测量多发性硬化症（MS）患者及其护理人员的健康相关生活质量（HRQoL），并评估哪些因素最能描述HRQoL。方法：对9家入选MS患者的医院进行的横断面多中心研究他们的看护人谁连续去了门诊。所用的器械是用于患者的SF-36和用于护理人员的SF-12和GHQ-12。结果：共705例患者（平均年龄40.4岁，中度扩展残疾状态量表2.5，复发缓解型MS的77.8％）和551名护理人员（平均年龄45.4）年）参加了这项研究。 MS患者的HRQoL显着低于一般人群（身体SF-36：39.9; 95％置信区间[CI]：39.1-40.6;精神SF-36：44.4; 95％CI：43.5-45.3）。照护者的HRQoL也低于一般人群，尤其是在其精神领域（精神SF-12：46.4; 95％CI：45.5-47.3）。此外，根据GHQ-12，有27％的看护人表现出可能的心理困扰。患者的残疾和合并症以及护理者的合并症和就业状况是其HRQoL的最重要解释因素。结论：不仅MS患者的HRQoL以及护理者的HRQoL确实受到显着影响。照护者的HRQoL接近于慢性病人群，即使患者样本的临床严重程度较轻，并且照护角色是研究背景中的常见任务。

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