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多发性硬化症患者参与度和自主性的预测因素

Predictors of Participation and Autonomy in People With Multiple Sclerosis.

作者信息

Karhula Maarit E, Tolvanen Asko, Hämäläinen Päivi I, Ruutiainen Juhani, Salminen Anna-Liisa, Era Pertti

机构信息

Maarit E. Karhula, MSc, OT, is Research Manager, Department of Sustainable Well-Being, South Eastern Finland University of Applied Sciences, Mikkeli, Finland; PhD Student, Department of Health Sciences, University of Jyväskylä, Jyväskylä, Finland; and Researcher, GeroCenter Foundation for Aging Research and Development, Jyväskylä, Finland;

Asko Tolvanen, PhD, is Professor, Department of Psychology, University of Jyväskylä, Jyväskylä, Finland.

出版信息

Am J Occup Ther. 2019 Jul/Aug;73(4):7304205070p1-7304205070p8. doi: 10.5014/ajot.2019.030221.

Abstract

IMPORTANCE

Because multiple sclerosis (MS) affects many life areas, it is important to know how participation and autonomy are associated with the perceived impact of MS on everyday life.

OBJECTIVE

To investigate how perceived quality of life, disease impact, gender, and disease severity predict participation and autonomy in people with MS.

DESIGN

Cross-sectional study in which structural equation modeling was used to evaluate relationships between measured variables.

SETTINGS

Outpatient clinics in three areas and one inpatient rehabilitation center in Finland.

PARTICIPANTS

Convenience sample of 194 people with MS.

OUTCOMES AND MEASURES

Participants completed the Impact on Participation and Autonomy (IPA), the World Health Organization Quality of Life-Brief measure (WHOQOL-BREF), and the Multiple Sclerosis Impact Scale (MSIS-29). The Expanded Disability Status Scale (EDSS) was administered by a neurologist.

RESULTS

The final model showed good fit to the data. All the goodness-of-fit indexes except χ² supported the model, χ²(30, N = 194) = 46.729, p < .026; comparative fit index = .983; Tucker-Lewis index = .969; root mean square error of approximation = .054; standardized root mean square residual = .039. Quality of life (WHOQOL-BREF) and the impact of multiple sclerosis (MSIS-29) were the main predictors of participation and autonomy. Disease severity influenced only the IPA Autonomy Indoors domain. Gender was not associated with participation and autonomy.

CONCLUSION AND RELEVANCE

Experiences of participation and autonomy appear to be closely associated with perceived quality of life and impact of the disease. Findings support the importance of assessing participation and autonomy and planning interventions using this information.

WHAT THIS ARTICLE ADDS

The IPA appears to be an appropriate measure for assessing participation and autonomy and planning occupational therapy interventions for people with MS. In particular, environmental factors affecting participation and autonomy should be considered when planning interventions to promote participation and autonomy.

摘要

重要性

由于多发性硬化症(MS)会影响生活的多个方面,了解参与度和自主性与MS对日常生活的感知影响之间的关联很重要。

目的

调查生活质量感知、疾病影响、性别和疾病严重程度如何预测MS患者的参与度和自主性。

设计

采用横断面研究,运用结构方程模型评估测量变量之间的关系。

地点

芬兰三个地区的门诊诊所和一个住院康复中心。

参与者

194名MS患者的便利样本。

结果与测量指标

参与者完成了参与和自主性影响量表(IPA)、世界卫生组织生活质量简表(WHOQOL - BREF)以及多发性硬化症影响量表(MSIS - 29)。扩展残疾状态量表(EDSS)由神经科医生进行评定。

结果

最终模型与数据拟合良好。除卡方值外,所有拟合优度指标均支持该模型,卡方值(30,N = 194)= 46.729,p <.026;比较拟合指数 =.983;塔克 - 刘易斯指数 =.969;近似均方根误差 =.054;标准化残差均方根 =.039。生活质量(WHOQOL - BREF)和多发性硬化症的影响(MSIS - 29)是参与度和自主性的主要预测因素。疾病严重程度仅影响IPA室内自主性领域。性别与参与度和自主性无关。

结论及意义

参与度和自主性的体验似乎与生活质量感知和疾病影响密切相关。研究结果支持评估参与度和自主性并利用这些信息规划干预措施的重要性。

本文补充内容

IPA似乎是评估MS患者参与度和自主性以及规划职业治疗干预措施的合适指标。特别是在规划促进参与度和自主性的干预措施时,应考虑影响参与度和自主性的环境因素。

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