Impact of Walking Impairment in Multiple Sclerosis Perspectives of Patients and Care Partners

Impact of Walking Impairment in Multiple Sclerosis Perspectives of Patients and Care Partners
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DOI:
10.2165/11591150-000000000-00000
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发表时间:
2011-09-01
影响因子:
3.6
通讯作者:
LaRocca, Nicholas G.
LaRocca, Nicholas G.
中科院分区:
医学2区
文献类型:
--
作者:
LaRocca, Nicholas G.

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背景:多发性硬化症(MS)是一种与步态障碍相关的慢性神经系统疾病,会对生活质量(QOL)产生不利影响。从多发性硬化症患者和多发性硬化症患者的护理伙伴(定义为照顾患有多发性硬化症的朋友或家人的个人)的角度来看,缺乏关于这些损伤影响的数据。 方法:2008 年 1 月和 2 月,Harris Interactive (R) (HI) 代表 Acorda Therapeutics, Inc. 和国家多发性硬化症协会(美国)进行了在线调查,以探讨行走困难(定义为在 从多发性硬化症患者和多发性硬化症患者的护理伙伴的角度来看,每周至少两次和/或由于多发性硬化症而每周至少不能行走两次)。研究人群来自 HI 和 eRewards 市场研究生成的现有小组,成员包括自我报告的多发性硬化症患者、多发性硬化症患者的护理伙伴或与多发性硬化症患者生活在同一家庭的成年人。通过电子邮件邀请小组成员参与,并通过筛选问题验证他们的状态/资格。调查结果根据人口因素和上网倾向进行了加权。调整百分比以考虑接受多项答复并排除无答复。结果:受访者包括 1011 名多发性硬化症患者和 317 名护理伙伴。 MS 样本患者的人口统计学和 MS 疾病特征与一般人群中 MS 患者相似。在多发性硬化症患者中,41% 的人表示行走困难,其中 13% 的人每周至少无法行走两次。在行走困难的人中,70% 的人表示这是患有多发性硬化症最具挑战性的方面。在那些每周至少不能行走两次的人中,74% 的人表示这扰乱了他们的日常生活。只有 34% 患有行走困难的多发性硬化症患者有工作。多发性硬化症患者和医生之间关于行走困难的沟通不理想; 39% 的多发性硬化症患者表示,他们从未或很少与医生讨论过这个问题。所有护理伙伴中很大一部分人因照顾多发性硬化症患者而经历了生活质量和社会经济地位下降。结论:行走困难是多发性硬化症患者的常见障碍,对多发性硬化症患者和多发性硬化症患者的护理伙伴的生活质量产生不利影响。
Background: Multiple sclerosis (MS) is a chronic neurologic disease associated with gait impairment that adversely affects quality of life (QOL). Data are lacking on the impact of these impairments from the perspectives of people with MS and care partners of a person with MS, defined as individuals caring for a friend or family member with MS.Methods: In January and February 2008, online surveys were conducted by Harris Interactive (R) (HI) on behalf of Acorda Therapeutics, Inc. and the National MS Society (USA) to explore the impact of difficulty walking (defined as trouble walking at least twice a week and/or an inability to walk at least twice a week due to MS) from the perspectives of people with MS and care partners of a person with MS. The study population was drawn from pre-existing panels, generated by HI and eRewards market research, of self-reported people with MS, care partners of a person with MS, or adults living in the same household as a person with MS. Panel members were invited to participate by e-mail, and their status/eligibility was verified with screening questions. Surveyresults were weighted for demographic factors and propensity to be online. Percentages were adjusted to account for acceptance of multiple responses and exclusion of non-responses. Results: The respondents included 1011 people with MS and 317 care partners. Demographic and MS disease characteristics in the people with MS sample were similar to those of people with MS in the general population. Among people with MS, 41% reported having difficulty walking, including 13% with inability to walk at least twice a week. Of those with difficulty walking, 70% said it was the most challenging aspect of having MS. Of those with inability to walk at least twice a week, 74% said it disrupted their daily lives. Only 34% of people with MS with difficulty walking were employed. Communication between people with MS and physicians regarding difficulty walking was suboptimal; 39% of all people with MS said they never or rarely discussed it with their doctor. Significant percentages of all care partners experienced reduced QOL and socioeconomic status in association with caring for a person with MS.Conclusions: Difficulty walking is a common impairment in people with MS, with adverse effects on the QOL of people with MS and care partners of a person with MS.