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了解患者视角 - 类风湿关节炎:洞察、策略和期望(RAISE)患者需求调查结果。

Understanding the patient perspective - results of the Rheumatoid Arthritis: Insights, Strategies & Expectations (RAISE) patient needs survey.

机构信息

Glasgow Biomedical Research Centre, University of Glasgow, Glasgow, UK.

出版信息

Clin Exp Rheumatol. 2013 May-Jun;31(3):350-7. Epub 2013 Feb 13.

PMID:23406685
Abstract

OBJECTIVES

To gain insight into the management and treatment of rheumatoid arthritis (RA) from the perspective of patients with moderate to severe disease.

METHODS

We recruited patients with moderate-to-severe, active RA who were either biologic naïve or biologic experienced (i.e. receiving biologic therapy) and then surveyed their perceptions of their disease and its management through a questionnaire. The survey was administered by computer-assisted telephone interview of patients in 9 countries (n=586) and covered diagnosis, treatment, physician interaction, and lifestyle with RA. Mean age at onset of RA symptoms was 41 years, with an average time to diagnosis of 3 years.

RESULTS

Most physician-patient communication centered on symptoms and treatment rather than the impact of RA on quality of life (QoL). Biologic users had significantly more 'good' days per month than biologic-naïve patients (71% vs. 61%). Of all patients, 22% reported high levels of pain on the day of the interview. A majority of patients considered their lives to be controlled by RA, despite the fact that they were receiving the current standard of care. Although potentially eligible for biologic therapy, as defined by a broad set of criteria for this investigation, 62% of biologic-naïve patients were not aware of biologic therapies.

CONCLUSIONS

The Rheumatoid Arthritis: Insights, Strategies & Expectations (RAISE) survey describes how patients with moderate to severe RA view their disease and which issues are critically important to them. Despite substantial impact on QoL and emotional health, a minority of patients discuss these issues with their physician. Also, despite improvements afforded by biologic therapy, continuing symptoms and pain occur in a proportion of RA patients.

摘要

目的

从中重度疾病患者的角度了解类风湿关节炎(RA)的管理和治疗。

方法

我们招募了中重度、活动期 RA 患者,包括生物治疗初治患者和生物治疗经验患者(即正在接受生物治疗),然后通过问卷了解他们对疾病及其管理的看法。该调查通过计算机辅助电话访谈在 9 个国家(n=586)对患者进行,涵盖了诊断、治疗、医患互动和 RA 对生活方式的影响。RA 症状发病的平均年龄为 41 岁,平均诊断时间为 3 年。

结果

大多数医患沟通主要集中在症状和治疗上,而不是 RA 对生活质量(QoL)的影响。生物治疗使用者每月“良好”天数明显多于生物治疗初治患者(71% vs. 61%)。在所有患者中,22%的患者在接受采访当天报告有高度疼痛。尽管他们正在接受当前的标准治疗,但大多数患者认为他们的生活受到 RA 的控制。尽管根据本研究的广泛标准,有潜在资格接受生物治疗,但 62%的生物治疗初治患者并不知道生物治疗。

结论

类风湿关节炎:洞察、策略和期望(RAISE)调查描述了中重度 RA 患者如何看待他们的疾病以及哪些问题对他们至关重要。尽管对 QoL 和心理健康有重大影响,但少数患者会与医生讨论这些问题。此外,尽管生物治疗可改善病情,但仍有一部分 RA 患者持续出现症状和疼痛。

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