Patient Expectations and Perceptions of Goal-setting Strategies for Disease Management in Rheumatoid Arthritis
Patient Expectations and Perceptions of Goal-setting Strategies for Disease Management in Rheumatoid Arthritis
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DOI：
10.3899/jrheum.140976
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发表时间：
2015-11-01
影响因子：
3.9
通讯作者：
Taylor, Peter C.
中科院分区：
文献类型：
--
作者：
Strand, Vibeke;Wright, Grace C.;Taylor, Peter C.
目标。确定患者如何看待活动性类风湿关节炎(RA)对他们日常生活的广泛影响，并指出RA疾病管理如何受益于纳入个人目标设定策略。类风湿关节炎患者完成了两项跨国调查。这项名为“禁食好日子”的调查旨在探讨疾病对类风湿性关节炎女性的日常生活和人际关系的影响。这项名为“更快到达目的地”的调查考察了类风湿性关节炎患者的治疗期望和目标设定实践。来自各国的受访者一致认为，类风湿关节炎对他们生活的许多方面(工作效率、日常生活、参与社交和休闲活动)和情绪健康(失去自信、孤立感、孤立感)都有实质性的负面影响。日常疼痛是最重要的问题，没有疼痛和疲劳被认为是“美好一天”的主要指标。设定个人、社会和治疗目标，以及监测疾病进展以实现这些目标，被类风湿患者认为是非常有益的，但治疗目标的讨论很少出现在医疗预约中。许多RA患者感到无法将他们的疾病负担和治疗目标传达给他们的医疗保健提供者(HCP)，这对他们来说是至关重要的。从这两项调查中获得的见解应该有助于指导患者和HCP更好地专注于共同定义的目标，以继续改善RA的管理和实现最佳护理。
Objective. To identify how patients perceive the broad effect of active rheumatoid arthritis (RA) on their daily lives and indicate how RA disease management could benefit from the inclusion of individual goal-setting strategies.Methods. Two multinational surveys were completed by patients with RA. The "Good Days Fast" survey was conducted to explore the effect of disease on the daily lives and relationships of women with RA. The "Getting to Your Destination Faster" survey examined RA patients' treatment expectations and goal-setting practices.Results. Respondents from all countries agreed that RA had a substantial negative effect on many aspects of their lives (work productivity, daily routines, participation in social and leisure activities) and emotional well-being (loss of self-confidence, feelings of detachment, isolation). Daily pain was a paramount issue, and being pain-and fatigue-free was considered the main indicator of a "good day." Setting personal, social, and treatment goals, as well as monitoring disease progress to achieve these, was considered very beneficial by patients with RA, but discussion of treatment goals seldom appeared to be a part of medical appointments.Conclusion. Many patients with RA feel unable to communicate their disease burden and treatment goals, which are critically important to them, to their healthcare provider (HCP). Insights gained from these 2 surveys should help to guide patients and HCP to better focus upon mutually defined goals for continued improvement of management and achievement of optimal care in RA.