Universidad de Sevilla, Health & Territory Research (HTR), Sevilla, Spain
Patient Advocacy, Spanish Federation of Spondyloarthritis Associations (CEADE), Madrid, Spain.
RMD Open. 2024 Jun 8;10(2):e003504. doi: 10.1136/rmdopen-2023-003504.
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.
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.
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%).
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.
国际强直性脊柱炎地图（IMAS）是一项全球性倡议，旨在评估强直性脊柱炎（axSpA）的影响和负担，并从患者的角度确定未满足的需求。
IMAS 由强直性脊柱炎国际联合会（ASIF）、塞维利亚大学、诺华制药公司合作开展，由一个科学委员会指导。IMAS 通过一项在线横断面调查（2017-2022 年）收集信息，来自欧洲、亚洲、北美、拉丁美洲和非洲的未选择的 axSpA 患者参与了这项调查，他们完成了一份包含 120 多个项目的综合问卷。
5557 名 axSpA 患者参与了 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（Bath 强直性脊柱炎疾病活动指数≥4），59.4%报告心理健康状况较差（12 项一般健康问卷≥3）。在调查前一年，患者就诊于初级保健医生 4.6 次，风湿科医生 3.6 次。78.6%曾服用过非甾体抗炎药，48.8%曾服用过生物改善病情抗风湿药，43.6%曾服用过传统合成改善病情抗风湿药。患者最担心的是疾病进展（55.9%），而最大的希望是缓解疼痛（54.2%）。
IMAS 展示了全球 axSpA 患者的概况，突出了全球 axSpA 患者未满足的需求、诊断延迟时间长和疾病负担重等问题。这些全球信息将使我们能够进行更详细的调查，获得全球患者关注的关键问题的证据，以改善他们的护理和生活质量。
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