Martinez-Martin Pablo, Arroyo Susana, Rojo-Abuin Jose Manuel, Rodriguez-Blazquez Carmen, Frades Belen, de Pedro Cuesta Jesus
Department of Applied Epidemiology, National Center for Epidemiology, and Centro de Investigación Biomédica en Red sobre Enfermedades Neurodegenerativas (CIBERNED), Carlos III Institute of Health, Madrid, Spain.
Mov Disord. 2008 Sep 15;23(12):1673-80. doi: 10.1002/mds.22106.
The objective of this study is to describe the characteristics of the caregivers of patients with Parkinson's disease (PD) and to analyze the association between these characteristics and caregiver burden, perceived health and mood status, and identify their predictors. A multicenter, nationwide, observational, cross-sectional study that included 289 patient-caregiver pairs was conducted. Caregiver self-assessments were the Hospital Anxiety and Depression Scale (HADS), EuroQol (EQ), and Zarit Caregiver Burden Inventory (ZCBI). Most caregivers in the study were women aged 60 years or thereabouts. Over two thirds were gainfully employed or housewives, 75% were patients' spouses, and the majority (96.5%) had been permanently taking care of the patient for 6 +/- 5.4 years. Less than 5% of patients were in the most advanced stages of disease, and direct costs were 6,350 euros per patient per year. Caregivers had more mood disorders and worse health-related quality of life (HRQol; EQ-Tariff) than did the general population. Caregiver HADS and EuroQol scores displayed a weak correlation (r(S) = 0.01-0.28) with patient-related variables (disease duration, HY, SCOPA-Motor, SCOPA-AUT, HADS, PPRS, and CISI-PD) whereas the ZCBI correlated moderately (r(S) = 0.27-0.47). Among caregivers, the EQ-Tariff was significantly lower and the HADS-Anxiety scores significantly higher for women. ZCBI and HADS-depression, though not EuroQol and HADS-anxiety, scores significantly increased with increasing PD severity levels. Caregivers' affective status proved the most important factor influencing their burden and perceived health, whereas patient-related variables influenced caregiver burden and mood but not health status. In PD, prevalence of affective disorders among patients' caregivers is high and influences both burden and HRQoL.
本研究的目的是描述帕金森病（PD）患者照料者的特征，分析这些特征与照料者负担、感知健康和情绪状态之间的关联，并确定其预测因素。开展了一项多中心、全国性、观察性横断面研究，纳入了289对患者-照料者。照料者的自我评估采用医院焦虑抑郁量表（HADS）、欧洲五维度健康量表（EQ）和扎里特照料者负担量表（ZCBI）。研究中的大多数照料者为60岁左右的女性。超过三分之二的人有工作或为家庭主妇，75%是患者的配偶，大多数（96.5%）已持续照料患者6±5.4年。不到5%的患者处于疾病最晚期，每位患者每年的直接费用为6350欧元。与普通人群相比，照料者有更多的情绪障碍，健康相关生活质量（HRQol；EQ-关税）更差。照料者的HADS和EQ得分与患者相关变量（病程、Hoehn-Yahr分级、SCOPA-运动、SCOPA-自主神经、HADS、PPRS和CISI-PD）呈弱相关性（r(S)=0.01-0.28），而ZCBI呈中度相关性（r(S)=0.27-0.47）。在照料者中，女性的EQ-关税得分显著更低，HADS-焦虑得分显著更高。ZCBI和HADS-抑郁得分（而非EQ和HADS-焦虑得分）随PD严重程度增加而显著升高。照料者的情感状态被证明是影响其负担和感知健康的最重要因素，而患者相关变量影响照料者负担和情绪，但不影响健康状态。在PD中，患者照料者中情感障碍的患病率较高，且影响负担和HRQoL。
