轴性脊柱关节炎国际地图(IMAS):来自全球 27 个国家的 5557 名患者的研究结果。

IF 5.1 2区 医学 Q1 RHEUMATOLOGY RMD Open Pub Date : 2024-06-08 DOI:10.1136/rmdopen-2023-003504
Marco Garrido-Cumbrera, Denis Poddubnyy, Fernando Sommerfleck, Christine Bundy, Souzi Makri, José Correa-Fernández, Shashank Akerkar, Jo Lowe, Elie Karam, Laura Christen, Victoria Navarro-Compan
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引用次数: 0

摘要

背景:轴性脊柱关节炎国际地图(IMAS)是一项全球性倡议,旨在评估轴性脊柱关节炎(axSpA)的影响和负担,并从患者的角度确定尚未满足的需求:IMAS是轴性脊柱关节炎国际联合会(ASIF)、塞维利亚大学和诺华制药公司之间的合作项目,由一个科学委员会负责指导。IMAS通过在线横断面调查(2017-2022年)收集来自欧洲、亚洲、北美、拉丁美洲和非洲的未入选轴性SpA患者的信息,这些患者填写了一份包含120多个项目的综合问卷:5557名轴性SpA患者参加了IMAS。平均年龄为(43.9 ± 12.8)岁,55.4%为女性,46.2%受过大学教育,51.0%有工作。平均诊断延迟时间为(7.4 ± 9.0)年(中位数:4.0),平均症状持续时间为(17.1 ± 13.3)年。75.0%的患者疾病处于活动期(巴斯强直性脊柱炎疾病活动指数≥4),59.4%的患者称心理健康状况不佳(12项一般健康问卷≥3)。在调查前的一年中,患者看了 4.6 次初级保健医生,3.6 次风湿免疫科医生。78.6%的患者曾经服用过非类固醇抗炎药,48.8%的患者服用过生物改善病情抗风湿药,43.6%的患者服用过传统合成改善病情抗风湿药。患者最大的恐惧是疾病进展(55.9%),最大的希望是能够缓解疼痛(54.2%):IMAS显示了全球轴性SpA患者的概况,突显了全球轴性SpA患者尚未满足的需求、诊断的长期延误和疾病的沉重负担。这些全球信息将有助于进行更详细的调查,以获得与全球患者息息相关的关键问题的证据,从而改善他们的护理和生活质量。
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International Map of Axial Spondyloarthritis (IMAS): results from the perspective of 5557 patients from 27 countries around the globe.

Background: The International Map of Axial Spondyloarthritis (IMAS) is a global initiative aimed to assess the impact and burden of axial spondyloarthritis (axSpA) and identify the unmet needs from the patient's perspective.

Method: IMAS is a collaboration between the Axial Spondyloarthritis International Federation (ASIF), the University of Seville, Novartis Pharma AG and steered by a scientific committee. IMAS collected information through an online cross-sectional survey (2017-2022) from unselected patients with axSpA from Europe, Asia, North America, Latin America and Africa who completed a comprehensive questionnaire containing over 120 items.

Results: 5557 patients with axSpA participated in IMAS. Mean age was 43.9 ±12.8 years, 55.4% were female, 46.2% had a university education and 51.0% were employed. The mean diagnostic delay was 7.4 ±9.0 years (median: 4.0), and the mean symptom duration was 17.1 ±13.3 years. 75.0% of patients had active disease (Bath Ankylosing Spondylitis Disease Activity Index ≥4), and 59.4% reported poor mental health (12-item General Health Questionnaire ≥3). In the year before the survey, patients had visited primary care physicians 4.6 times and the rheumatologist 3.6 times. 78.6% had taken non-steroidal anti-inflammatory drug ever, 48.8% biological disease-modifying antirheumatic drugs and 43.6% conventional synthetic disease-modifying antirheumatic drugs. Patients's greatest fear was disease progression (55.9%), while the greatest hope was to be able to relieve pain (54.2%).

Conclusions: IMAS shows the global profile of patients with axSpA, highlighting unmet needs, lengthy delays in diagnosis and high burden of disease in patients with axSpA worldwide. This global information will enable more detailed investigations to obtain evidence on the critical issues that matter to patients around the world to improve their care and quality of life.

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来源期刊
RMD Open
RMD Open RHEUMATOLOGY-
CiteScore
7.30
自引率
6.50%
发文量
205
审稿时长
14 weeks
期刊介绍: RMD Open publishes high quality peer-reviewed original research covering the full spectrum of musculoskeletal disorders, rheumatism and connective tissue diseases, including osteoporosis, spine and rehabilitation. Clinical and epidemiological research, basic and translational medicine, interesting clinical cases, and smaller studies that add to the literature are all considered.
期刊最新文献
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