Department of Medicine, Western Sydney University, Sydney, NSW, Australia.
Campbelltown Hospital, South West Sydney Local Health District, Sydney, NSW, Australia.
Int J Rheum Dis. 2020 Jul;23(7):898-910. doi: 10.1111/1756-185X.13893. Epub 2020 Jul 1.
Carers may offer valuable insight into the true health status of patients with rheumatoid arthritis (RA). This multinational, multi-stakeholder, exploratory study in Australia, China and Japan aimed to enrich our understanding of the role and potential impact of carers on RA management.
This study used a 2-phase sequential mixed methods approach involving 3 key stakeholder groups: rheumatologists, RA patients and carers. The first phase involved an in-depth qualitative exploratory survey (n = 30), which informed the development of the subsequent quantitative validation survey (n = 908). In both phases, patients and carers provided self-assessments of disease and support parameters.
In the qualitative phase, patients usually understated the amount of physical support required, compared to carers. Rheumatologists underestimated the amount of physical and emotional care required, compared to carers and patients; however, in the quantitative phase, rheumatologists overestimated the level of support provided by carers. Levels of support provided by carers increased as disease severity increased. Active participation of carers in clinical consultations and treatment decision-making was deemed important by 55% of all patients and 82% of all carers. All stakeholders believed carers' insights into the physical and emotional conditions of patients were useful and should be considered in clinical decision-making. Over 95% of rheumatologists reported soliciting input from the carer.
Carers provide valuable input that can give clinicians greater insight into the patients' physical and emotional states, and treatment adherence. Development of standardized carer-reported outcomes that correlate with patient-reported outcomes and clinical parameters will ensure clinical meaningfulness and external validity.
照护者可能对类风湿关节炎（RA）患者的真实健康状况提供有价值的见解。这项在澳大利亚、中国和日本开展的多国、多利益相关方、探索性研究旨在深入了解照护者在 RA 管理中的作用和潜在影响。
本研究采用了两阶段顺序混合方法，涉及 3 个主要利益相关者群体：风湿病学家、RA 患者和照护者。第一阶段包括一项深入的定性探索性调查（n=30），为随后的定量验证调查（n=908）的制定提供了信息。在两个阶段中，患者和照护者都对疾病和支持参数进行了自我评估。
在定性阶段，与照护者相比，患者通常低估了所需的体力支持量。与照护者和患者相比，风湿病学家低估了所需的体力和情感护理量；然而，在定量阶段，风湿病学家高估了照护者提供的支持水平。随着疾病严重程度的增加，照护者提供的支持水平增加。55%的所有患者和 82%的所有照护者认为照护者积极参与临床咨询和治疗决策制定非常重要。所有利益相关者都认为照护者对患者身体和情感状况的了解是有用的，应该在临床决策中加以考虑。超过 95%的风湿病学家报告说会征求照护者的意见。
照护者提供了有价值的信息，可以让临床医生更深入地了解患者的身体和情感状况，以及治疗依从性。制定与患者报告的结果和临床参数相关的标准化照护者报告的结果将确保临床意义和外部有效性。
