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Self-Reported Burden Among Caregivers of Patients with Multiple Sclerosis

机译:多发性硬化症患者看护者的自我报告负担

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摘要

Multiple sclerosis (MS) and Alzheimer's disease (AD) are chronic and progressive diseases that may impose a significant burden on caregivers and patients' immediate families. Extensive research shows MS and AD caregiver burden on physical and mental health, but no direct comparisons between MS and AD caregivers have been reported in the literature. The objective of this study was to examine the extent of MS caregiver burden compared with that of noncaregivers and AD caregivers. Data were obtained from the 2009 National Health and Wellness Survey administered online to a US representative adult sample (N = 75,000). Respondents reported health status, quality of life, work productivity, health-care utilization, and caregiver status. Multivariable regressions, adjusting for key characteristics (eg, age, gender, marital status, depression), were conducted to explore differences between MS caregivers (n = 215) and noncaregivers (n = 69,224) and between MS caregivers and AD caregivers (n = 1341). The results indicated that MS caregivers had significantly greater activity impairment (P = .01), poorer mental (P = .015) and physical (P = .002) health status, lower health utility scores (P = .002), and more traditional health-care provider visits (P < .001), emergency room (ER) visits (P < .001), and hospitalizations (P = .001) than noncaregivers, adjusting for covariates. After adjustments, MS caregivers had greater activity impairment (P = .044), more ER visits (P = .017), and more hospitalizations (P = .008) than AD caregivers. Significant work productivity differences were not observed across groups, possibly owing to fewer employed respondents. Thus, in this study, MS caregivers had significantly more burden than noncaregivers, and for some measures, even AD caregivers. The results reveal the hidden toll on those providing care for MS patients and highlight the need for health-care providers to recognize their burden so that appropriate measures can be implemented.
机译:多发性硬化症(MS)和阿尔茨海默氏病(AD)是慢性和进行性疾病,可能给看护人和患者的直系亲属带来巨大负担。广泛的研究表明,MS和AD照顾者会给身体和精神健康带来负担,但文献中尚无MS和AD照顾者之间直接比较的报道。这项研究的目的是检查与非照料者和AD照料者相比,MS照料者负担的程度。数据是从2009年全国健康与健康调查中在线获得的,该调查是针对美国代表性成人样本(N = 75,000)进行的。受访者报告了健康状况,生活质量,工作效率,医疗保健利用率和看护者状况。进行多变量回归分析,以调整关键特征(例如年龄,性别,婚姻状况,抑郁),以探索MS护理人员(n = 215)和非护理人员(n = 69,224)之间以及MS护理人员和AD护理人员(n = 1341)。结果表明,MS照护者的活动障碍(P = .01),精神状况(P = .015)和身体状况(P = .002)较差,健康效用得分较低(P = .002)以及更多。与非护理人员相比,传统的医疗保健提供者就诊(P <.001),急诊室(ER)就诊(P <.001)和住院(P = .001),需要对协变量进行调整。调整后,与AD照护者相比,MS照护者的活动障碍(P = .044),急诊就诊次数(P = .017)和住院治疗(P = .008)更多。在各组之间未观察到显着的工作生产率差异,这可能是由于受雇的受访者较少所致。因此,在这项研究中,MS照护者的负担比非照护者要多得多,在某些方面甚至包括AD照护者。结果揭示了为MS患者提供护理的人员的隐患,并强调了医疗服务提供者必须认识到他们的负担,以便可以采取适当的措施。

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