伴有复发缓解型多发性硬化的轻度残疾患者的生活伴侣的照料者负担。

Caregiver strain among life partners of persons with mild disability due to relapsing-remitting multiple sclerosis.

机构信息

Institute of Psychology, Health, Medical and Neuropsychology Unit, Leiden University, PO Box 9555, 2300 RB Leiden, the Netherlands; National Multiple Sclerosis Foundation, Mathenesserlaan 378, 3023 HB Rotterdam, the Netherlands; Department of Neurology, Elisabeth-TweeSteden Hospital, PO Box 90151, 5000 LC Tilburg, the Netherlands.

出版信息

Mult Scler Relat Disord. 2019 Jun;31:5-11. doi: 10.1016/j.msard.2019.03.005. Epub 2019 Mar 6.

DOI:10.1016/j.msard.2019.03.005

PMID:30877926

Abstract

BACKGROUND

Multiple sclerosis (MS) is a chronic disorder of the central nervous system with an unpredictable disease course. Life partners often become caregivers, which can be both rewarding and challenging, as the caregiver's physical and mental health is often negatively affected. Previous studies on caregiver strain focused on caregivers of persons with MS with relatively high disability levels, while caregiver strain may already be experienced by life partners living with mildly disabled persons with MS.

OBJECTIVE

The current study examines factors associated with caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS.

METHODS

We included 173 persons with relapsing-remitting MS (79% female; mean age 42.8 years; 90% employed; median EDSS 2.0) and their life partners. The life partners completed questionnaires on caregiver strain and neuropsychiatric and cognitive functioning of the person with MS. The persons with MS completed questionnaires about demographics, fatigue, personality, physical, cognitive and neuropsychiatric functioning, and underwent neuropsychological and neurological examinations. A linear regression analysis was conducted to examine predictors of caregiver strain.

RESULTS

24% of the life partners experienced above average levels of caregiver strain. A multivariate linear regression analysis revealed that a higher age of the person with MS (β = 0.16, p = 0.04), more physical disability (β = 0.17 p = 0.04), more cognitive and neuropsychiatric problems of the person with MS as reported by the life partner (β = 0.33, p = 0.001) and higher severity of neuropsychiatric symptoms as reported by the life partner (β = 0.32, p = 0.001) were associated with higher caregiver strain (R = 0.49).

CONCLUSION

Higher caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS was primarily associated with cognitive and neuropsychiatric problems of the person with MS.

摘要

背景

多发性硬化症（MS）是一种中枢神经系统的慢性疾病，其病程不可预测。生活伴侣通常会成为照顾者，这既有益又具有挑战性，因为照顾者的身心健康经常受到负面影响。以前关于照顾者压力的研究主要集中在残疾程度相对较高的 MS 患者的照顾者身上，而生活伴侣与轻度残疾的 MS 患者一起生活时可能已经感受到了照顾者的压力。

目的

本研究旨在探讨与轻度残疾的复发性缓解型 MS 患者的生活伴侣的照顾者压力相关的因素。

方法

我们纳入了 173 名复发性缓解型 MS 患者（79%为女性；平均年龄 42.8 岁；90%有工作；中位 EDSS 为 2.0）及其生活伴侣。生活伴侣完成了关于照顾者压力以及 MS 患者神经心理和认知功能的问卷。MS 患者完成了关于人口统计学、疲劳、人格、身体、认知和神经心理功能的问卷，并接受了神经心理学和神经学检查。进行线性回归分析以检验照顾者压力的预测因素。

结果

24%的生活伴侣经历了高于平均水平的照顾者压力。多变量线性回归分析显示，MS 患者的年龄较高（β=0.16，p=0.04）、身体残疾程度较高（β=0.17，p=0.04）、生活伴侣报告的 MS 患者的认知和神经心理问题较多（β=0.33，p=0.001）以及生活伴侣报告的神经精神症状严重程度较高（β=0.32，p=0.001）与较高的照顾者压力相关（R²=0.49）。