Brouwer Werner B F, van Exel N Job A, van de Berg Bernard, Dinant Huib J, Koopmanschap Marc A, van den Bos Geertrudis A M
Erasmus University, Rotterdam, The Netherlands.
Arthritis Rheum. 2004 Aug 15;51(4):570-7. doi: 10.1002/art.20528.
OBJECTIVE: To improve understanding of the nature and magnitude of the burden of informal care and also to indicate important areas for improving the current ways in which informal care is investigated. METHODS: Information on objective burden (such as care tasks performed and time investment), subjective burden (using the Caregiver Reaction Assessment instrument and a self-rated burden score), and quality of life (using the EuroQoL instrument) were collected in a postal questionnaire of 153 informal caregivers who provide care for rheumatoid arthritis (RA) patients. RESULTS: Caregivers had been caring for the RA patients on average for >11 years, reflecting the chronic nature of RA. They provide a substantial amount of care (27.4 hours per week) and are moderately strained (24.6 on the self-rated burden scale). Caregivers are relatively healthy on average but caregivers of more severe RA patients are relatively unhealthy, which may indicate health losses due to caregiving. CONCLUSION: Informal care can be burdensome in the context of RA. More information may help assist informal caregivers in caring for RA patients and help to avoid health problems and high subjective burden.
目的:增进对非正式照护负担的性质和程度的理解,并指出改善当前非正式照护调查方式的重要领域。 方法:通过对153名照顾类风湿关节炎(RA)患者的非正式照护者进行邮政问卷调查,收集有关客观负担(如执行的照护任务和时间投入)、主观负担(使用照顾者反应评估工具和自我评定的负担分数)以及生活质量(使用欧洲生活质量量表)的信息。 结果:照护者平均为RA患者提供照护已超过11年,这反映了RA的慢性特征。他们提供大量的照护(每周27.4小时),且承受中度压力(自我评定负担量表评分为24.6)。照护者平均相对健康,但病情较重的RA患者的照护者相对不健康,这可能表明照护导致了健康损失。 结论:在RA背景下,非正式照护可能负担沉重。更多信息可能有助于协助非正式照护者照顾RA患者,并有助于避免健康问题和高主观负担。
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