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应对多发性硬化症:协调健康相关生活质量的重要方面。

Coping with multiple sclerosis: reconciling significant aspects of health-related quality of life.

作者信息

Gil-González Irene, Martín-Rodríguez Agustín, Conrad Rupert, Pérez-San-Gregorio María Ángeles

机构信息

Department of Personality, Assessment, and Psychological Treatment, University of Seville, Seville, Spain.

Department of Psychosomatic Medicine and Psychotherapy, University Hospital Bonn, Bonn, Germany.

出版信息

Psychol Health Med. 2023 Jun;28(5):1167-1180. doi: 10.1080/13548506.2022.2077395. Epub 2022 May 16.

Abstract

Multiple sclerosis (MS) symptoms and unpredictability can damage patient well-being. This study is aimed to investigate the relation between sociodemographic and clinical characteristics and the use of coping strategies as well as social support on health-related quality of life (HRQOL). We evaluated 314 MS outpatients of Virgen Macarena University Hospital in Sevilla/Spain (mean age 45 years, 67.8% women) twice over an 18-months period by Brief COPE Questionnaire (COPE-28), Multidimensional Scale of Perceived Social Support (MSPSS) and 12-Item Short Form Health Survey (SF-12). Female gender was significantly related to religion (r= 0.175, p< 0.001), self-distraction (r= 0.160, p< 0.001) and self-blame (r= 0.131, p< 0.05). Age correlated positively with religion (r= 0.240, p< 0.001), and self-blame (r= 0.123, p< 0.05). Progressive MS as well as functional impairment (EDSS) showed a positive relation with denial (r= 0.125, p< 0.05; r= 0.150, p< 0.001). Longer duration since diagnosis was related to lower perceived support from family (r= -0.123, p< 0.05). EDSS (β= -0.452, p< 0.001) was the strongest negative predictor of physical HRQOL followed by age (β= -0.123, p< 0.001), whereas family support was a protective factor (β= 0.096, p< 0.001). Denial (β= -0.132, p< 0.05), self-blame (β= -0.156, p< 0.05), female gender (β= -0.115, p< 0.05) and EDSS (β= -0.108, p< 0.05) negatively impacted on mental HRQOL 18 months later, whereas positive reframing (β= 0.142, p< 0.05) was a protective factor. Our study could identify sociodemographic and clinical variables associated with dysfunctional coping strategies, such as self-blame and denial, which specifically predict worse mental HRQOL as opposed to positive reframing. Diminishing dysfunctional coping and supporting cognitive reframing may contribute to improve HRQOL in MS.

摘要

多发性硬化症(MS)的症状及不可预测性会损害患者的健康。本研究旨在调查社会人口学和临床特征与应对策略的使用以及社会支持对健康相关生活质量(HRQOL)的关系。我们在18个月的时间里,对西班牙塞维利亚马卡雷纳圣母大学医院的314名MS门诊患者(平均年龄45岁,67.8%为女性)进行了两次评估,使用的工具包括简易应对方式问卷(COPE - 28)、领悟社会支持量表(MSPSS)和12项简短健康调查问卷(SF - 12)。女性性别与宗教信仰(r = 0.175,p < 0.001)、自我分心(r = 0.160,p < 0.001)和自我责备(r = 0.131,p < 0.05)显著相关。年龄与宗教信仰(r = 0.240,p < 0.001)和自我责备(r = 0.123,p < 0.05)呈正相关。进展型MS以及功能障碍(扩展残疾状态量表,EDSS)与否认呈正相关(r = 0.125,p < 0.05;r = 0.150,p < 0.001)。诊断后的病程越长,感知到的来自家庭的支持越低(r = -0.123,p < 0.05)。EDSS(β = -0.452,p < 0.001)是身体HRQOL最强的负向预测因子,其次是年龄(β = -0.

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