Bruns Alessandra, Hilário Maria Odete Esteves, Jennings Fabio, Silva Clovis Artur, Natour Jamil
Universidade Federal de São Paulo, Division of Rheumatology, Rua Botucatu 740, São Paulo 04023900, Brazil.
Joint Bone Spine. 2008 Mar;75(2):149-54. doi: 10.1016/j.jbspin.2007.07.007. Epub 2007 Sep 29.
To evaluate the quality of life and the disease burden on primary caregivers of patients with juvenile idiopathic arthritis (JIA).
Seventy patients with JIA and their respective caregivers were enrolled in this study. Health, quality of life and psychological status were assessed by using the childhood health assessment questionnaire (CHAQ), the medical outcomes study 36-item short-form health survey (SF-36) and the psychiatric screening questionnaire (SRQ-20). Burden of disease on the caregivers was measured by the caregiver burden scale (CB Scale).
Most caregivers were women (91.4%), married (76.6%), mothers (92.2%) and their average age was 37.2+/-8.8 years. Low education and socioeconomic state were observed in most of the caregivers. Psychoemotional disorders measured by the SRQ-20 were detected in 34.3% of the caregivers. Pain and mental health were the items in the SF-36 questionnaire most affected in these individuals. Mean score of global burden measured by the CB Scale was 1.6+/-0.3 (disappointment and environment had the lowest scores). The CB Scale was significantly correlated with the SRQ-20 (r=0.6), number of limited joints (r=0.3), number of visits (r=0.2), family income (r=-0.3) and mental health (r=-0.6), emotional aspects (r=-0.4), social aspects (r=-0.4), vitality (r=-0.5) and general health state of the SF-36 (r=-0.4). SRQ-20 was the most important determinant of CB Scale and of the components pain and mental health of the SF-36 questionnaire.
Most of the disease burden on the caregivers depends upon emotional aspects rather than on the physical status of the patients.
评估幼年特发性关节炎（JIA）患者的初级护理人员的生活质量和疾病负担。
本研究纳入了70例JIA患者及其各自的护理人员。使用儿童健康评估问卷（CHAQ）、医学结局研究36项简短健康调查（SF-36）和精神筛查问卷（SRQ-20）评估健康状况、生活质量和心理状态。通过护理人员负担量表（CB量表）测量护理人员的疾病负担。
大多数护理人员为女性（91.4%）、已婚（76.6%）、母亲（92.2%），平均年龄为37.2±8.8岁。大多数护理人员的教育程度和社会经济状况较低。通过SRQ-20测量发现34.3%的护理人员存在心理情绪障碍。疼痛和心理健康是这些个体中SF-36问卷中受影响最大的项目。通过CB量表测量的总体负担平均得分为1.6±0.3（失望和环境得分最低）。CB量表与SRQ-20（r=0.6）、关节受限数量（r=0.3）、就诊次数（r=0.2）、家庭收入（r=-0.3）以及SF-36的心理健康（r=-0.6）、情感方面（r=-0.4）、社会方面（r=-0.4）、活力（r=-0.5）和总体健康状况（r=-0.4）显著相关。SRQ-20是CB量表以及SF-36问卷中疼痛和心理健康成分的最重要决定因素。
护理人员的大多数疾病负担取决于情感方面，而非患者的身体状况。
