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多发性硬化症和脊髓损伤的参与满意度。

Satisfaction with participation in multiple sclerosis and spinal cord injury.

机构信息

Department of Rehabilitation Medicine, University of Washington, Seattle, WA 98195-6490, USA.

出版信息

Disabil Rehabil. 2012;34(9):747-53. doi: 10.3109/09638288.2011.619615. Epub 2011 Oct 17.

Abstract

PURPOSE

To validate a single item self-report of satisfaction with participation in two groups with differing patterns of symptoms and disease progress, multiple sclerosis (MS) and spinal cord injury (SCI).

METHOD

Community-dwelling adults with MS (N = 1,271) or SCI (N = 620) completed a battery of self-report questionnaires covering demographic information, disease specific measures, symptoms, psychological distress, social-environmental issues, and overall well-being. They were also asked to rate satisfaction with participation: How satisfied are you with your ability to take part in activities that are important to you: not satisfied, somewhat satisfied, satisfied, or very satisfied. Kendall's tau rank correlation coefficient and χ(2) tests were used to examine the strength and direction of associations between demographic and symptom variables and responses to the participation item.

RESULTS

Although the demographics of the MS and SCI differed in predictable ways, younger participants and those employed report more satisfaction with participation. Ratings of satisfaction with participation were also consistently associated with a number of variables including less fatigue, pain, depression, stress, anxiety, as well as higher overall measures of well-being across the two populations.

CONCLUSIONS

More research is needed to better understand the multiple dimensions that comprise participation and to develop robust and sensitive measurement tools. A global rating of satisfaction with participation using one item has a number of potentially useful applications including description of case mix in clinical trials.

摘要

目的

验证一种针对两种具有不同症状和疾病进展模式的人群(多发性硬化症[MS]和脊髓损伤[SCI])的单一项目自我报告满意度的有效性。

方法

社区居住的 MS(N=1271)或 SCI(N=620)成年患者完成了一套自我报告问卷,涵盖人口统计学信息、疾病特定指标、症状、心理困扰、社会环境问题和整体幸福感。他们还被要求对参与度的满意度进行评分:你对你参与对你重要的活动的能力感到满意吗:不满意、有点满意、满意或非常满意。使用 Kendall 的 tau 等级相关系数和 χ(2)检验来检验人口统计学和症状变量与参与项目的反应之间的关联的强度和方向。

结果

尽管 MS 和 SCI 的人口统计学特征以可预测的方式存在差异,但年轻的参与者和就业者报告的参与度更高。参与度的评分也与许多变量一致相关,包括疲劳、疼痛、抑郁、压力、焦虑的减轻,以及两个群体的整体幸福感的提高。

结论

需要进一步研究以更好地理解构成参与的多个维度,并开发稳健和敏感的测量工具。使用一个项目对参与度进行整体满意度评分具有许多潜在的有用应用,包括在临床试验中描述病例组合。

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