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多发性硬化症对日常活动、情绪健康及人际关系的影响:全球多发性硬化症调查

Effect of Multiple Sclerosis on Daily Activities, Emotional Well-being, and Relationships: The Global vsMS Survey.

作者信息

Bass Ann D, Van Wijmeersch Bart, Mayer Lori, Mäurer Mathias, Boster Aaron, Mandel Matt, Mitchell Colin, Sharrock Kersten, Singer Barry

出版信息

Int J MS Care. 2020 Jul-Aug;22(4):158-164. doi: 10.7224/1537-2073.2018-087. Epub 2019 Aug 28.

Abstract

BACKGROUND

The vsMS survey was conducted to better understand the negative effects of fatigue, cognitive impairment, emotional burden, and decreased physical functioning on the personal, professional, and social lives of individuals with multiple sclerosis (MS).

METHODS

The vsMS survey was an online survey conducted in Australia, Canada, France, Italy, Spain, the United Kingdom, and the United States that assessed the impact of MS on individuals' daily activities, emotional well-being, relationships, and employment.

RESULTS

The survey included 1075 participants with relapsing-remitting MS. Almost 42% of participants reported that their ability to perform and manage daily activities had worsened during the previous 2 years. More than 50% reported limitations in daily activities due to fatigue, physical weakness, problems with balance/coordination, heat/cold sensitivity, memory problems, numbness/tingling, trouble concentrating, impaired movement/muscle stiffness, and impaired sleeping. Participants also reported a negative effect on emotional and social factors, including self-esteem, general outlook, well-being, maintaining/starting relationships, ability to progress in their career/keep their job, and ability to cope with life roles.

CONCLUSIONS

These data highlight the importance of addressing the impact of MS and the social and emotional disease burdens on daily activities when planning the care of patients with MS.

摘要

背景

开展vsMS调查是为了更好地了解疲劳、认知障碍、情感负担以及身体机能下降对多发性硬化症(MS)患者个人、职业和社会生活的负面影响。

方法

vsMS调查是一项在澳大利亚、加拿大、法国、意大利、西班牙、英国和美国进行的在线调查,评估了MS对个人日常活动、情绪健康、人际关系和就业的影响。

结果

该调查纳入了1075例复发缓解型MS患者。近42%的参与者报告称,在过去2年中,他们进行和管理日常活动的能力有所下降。超过50%的参与者报告称,由于疲劳、身体虚弱、平衡/协调问题、对热/冷敏感、记忆问题、麻木/刺痛、注意力不集中、运动障碍/肌肉僵硬以及睡眠障碍,他们的日常活动受到限制。参与者还报告了MS对情感和社会因素的负面影响,包括自尊、总体展望、幸福感、维持/建立人际关系、职业发展/保住工作的能力以及应对生活角色的能力。

结论

这些数据凸显了在规划MS患者护理时,应对MS的影响以及社会和情感疾病负担对日常活动影响的重要性。

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