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首页> 外文期刊>Patient Preference and Adherence >Perceptions of patients with rheumatic diseases on the impact on daily life and satisfaction with their medications: RHEU-LIFE, a survey to patients treated with subcutaneous biological products
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Perceptions of patients with rheumatic diseases on the impact on daily life and satisfaction with their medications: RHEU-LIFE, a survey to patients treated with subcutaneous biological products

机译：风湿病患者对日常生活和用药满意度的影响的看法：RHEU-LIFE，针对经皮下生物制品治疗的患者的调查

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Objective: The aim of this study was to explore perceptions of patients with rheumatic diseases treated with subcutaneous (SC) biological drugs on the impact on daily life and satisfaction with current therapy, including preferred attributes. Methods: A survey was developed ad hoc by four rheumatologists and three patients, including Likert questions on the impact of disease and treatment on daily life and preferred attributes of treatment. Rheumatologists from 50 participating centers were instructed to handout the survey to 20 consecutive patients with rheumatoid arthritis (RA), axial spondyloarthritis (ax-SpA), or psoriatic arthritis (PsA) receiving SC biological drugs. Patients responded to the survey at home and sent it to a central facility by prepaid mail. Results: A total of 592 patients returned the survey (response rate: 59.2%), 51.4% of whom had RA, 23.8% had ax-SpA, and 19.6% had PsA. Patients reported moderate-to-severe impact of their disease on their quality of life (QoL) (51.9%), work/daily activities (49.2%), emotional well-being (41.0%), personal relationships (26.0%), and close relatives’ life (32.3%); 30%–50% patients reported seldomever being inquired about these aspects by their rheumatologists. Treatment attributes ranked as most important were the normalization of QoL (43.6%) and the relief from symptoms (35.2%). The satisfaction with their current antirheumatic therapy was high (>80% were “satisfied” or “very satisfied”), despite moderate/severe impact of disease. Conclusion: Patients with rheumatic diseases on SC biological therapy perceive a high disease impact on different aspects of daily life, despite being highly satisfied with their treatment; the perception is that physicians do not frequently address personal problems. Normalization of QoL is the most important attribute of therapies to patients.
机译：目的：本研究的目的是探讨用皮下（SC）生物药物治疗的风湿病患者对日常生活的影响以及对当前疗法的满意程度，包括首选属性。方法：由四名风湿病学家和三名患者临时进行了一项调查，包括关于疾病和治疗对日常生活的影响以及治疗的偏好属性的李克特问题。指示来自50个参与中心的风湿病学家向接受SC生物药物的20名连续的类风湿性关节炎（RA），轴突性脊椎关节炎（ax-SpA）或银屑病关节炎（PsA）患者进行调查。患者在家中对调查做出回应，并通过预付费邮件将其发送到中央机构。结果：共有592例患者返回了调查（响应率：59.2％），其中RA占51.4％，ax-SpA占23.8％，PsA占19.6％。患者报告疾病对其生活质量（QoL）（51.9％），工作/日常活动（49.2％），情绪健康（41.0％），人际关系（26.0％）和中度至重度的影响近亲生活（32.3％）; 30％–50％的患者报告风湿病专家很少/从未询问过这些方面。最重要的治疗属性是QoL正常化（43.6％）和症状缓解（35.2％）。尽管对疾病的影响是中度/重度，他们对目前的抗风湿疗法的满意度仍然很高（> 80％的患者“满意”或“非常满意”）。结论：尽管对治疗非常满意，但接受SC生物疗法治疗的风湿病患者对日常生活的各个方面都产生了很大的疾病影响。人们认为医生不经常解决个人问题。 QoL的正常化是治疗对患者最重要的属性。

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