Miyashita Mitsunori, Narita Yugo, Sakamoto Aki, Kawada Norikazu, Akiyama Miki, Kayama Mami, Suzukamo Yoshimi, Fukuhara Shunichi
Department of Adult Nursing/Palliative Care Nursing, School of Health Science and Nursing, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan.
J Neurol Sci. 2009 Jan 15;276(1-2):148-52. doi: 10.1016/j.jns.2008.09.022. Epub 2008 Oct 26.
The aims of this study are to describe the care burden on caregivers of individuals with intractable neurological diseases and to clarify the prevalence of depression in caregivers and factors related to the presence of depression.
A cross-sectional survey was conducted among caregivers who provide home care to patients with neurological diseases such as Parkinson disease (PD), spinocerebellar degeneration (SCD), multiple system atrophy (MSA), and amyotrophic lateral sclerosis (ALS), using a mailed, self-administered questionnaire. We used the Burden Index of Caregivers to measure multi-dimensional care burden and the Center for Epidemiologic Studies Depression scale to determine the presence of depression among caregivers.
A total of 418 questionnaires were analyzed. Although several domains of care burden for caregivers were significantly different among the four diseases, the intensity of caregiving and hours spent caregiving were the main definitive variables. In addition, we described different aspects of the care burden using the multi-dimensional care burden scale. The prevalence of depression in caregivers was high (PD, 46%; SCD, 42%; MSA, 63%; ALS, 61%). Hours required for close supervision of the patient (P=0.015), intensity of caregiving (P=0.024), and low household income (P=0.013) were independently-related variables for depression in caregivers.
The care burden of caregivers was mainly explained by the intensity of caregiving and hours spent caregiving per day, not only according to the disease. The high prevalence of depression indicates the need for effective interventions, especially for caregivers of patients with MSA and ALS.
本研究旨在描述难治性神经疾病患者照料者的照料负担，阐明照料者中抑郁症的患病率以及与抑郁症存在相关的因素。
采用邮寄的自填式问卷，对为帕金森病（PD）、脊髓小脑变性（SCD）、多系统萎缩（MSA）和肌萎缩侧索硬化症（ALS）等神经疾病患者提供家庭照料的照料者进行横断面调查。我们使用照料者负担指数来衡量多维照料负担，并使用流行病学研究中心抑郁量表来确定照料者中抑郁症的存在情况。
共分析了418份问卷。尽管四种疾病的照料者在几个照料负担领域存在显著差异，但照料强度和照料时间是主要的决定性变量。此外，我们使用多维照料负担量表描述了照料负担的不同方面。照料者中抑郁症的患病率较高（PD为46%；SCD为42%；MSA为63%；ALS为61%）。对患者进行密切监督所需的时间（P = 0.015）、照料强度（P = 0.024）和家庭收入低（P = 0.013）是照料者患抑郁症的独立相关变量。
照料者的照料负担主要由照料强度和每天的照料时间来解释，而不仅仅取决于疾病。抑郁症的高患病率表明需要采取有效的干预措施，特别是针对MSA和ALS患者的照料者。
