The Taiwanese Map of Axial Spondyloarthritis: Living with the Condition

被引：1

作者：

Yen, Yi-Ning ^{[1
]}

Garrido-Cumbrera, Marco ^{[2
,3
]}

Sun, Yi-Syuan ^{[4
]}

Chen, Chen-Hung ^{[1
]}

Lai, Chien-Chih ^{[4
]}

Tsai, Hung-Cheng ^{[4
]}

Chen, Wei-Sheng ^{[4
]}

Liao, Hsien-Tzung ^{[4
]}

Tsao, Yen-Po ^{[5
]}

Tsai, Chang-Youh ^{[7
]}

Chou, Chung-Tei ^{[4
]}

机构：

[1] Buddhist Tzu Chi Med Fdn, Div Allergy Immunol & Rheumatol, Taipei Tzu Chi Hosp, New Taipei City 231, Taiwan

[2] Univ Seville, Hlth & Terr Res HTR, Seville 41004, Spain

[3] Axial Spondyloarthrit Int Federat ASIF, London WC1N 3AX, England

[4] Natl Yang Ming Chiao Tung Univ, Taipei Vet Gen Hosp, Div Allergy Immunol & Rheumatol, Taipei 112, Taiwan

[5] Natl Yang Ming Chiao Tung Univ, Taipei Vet Gen Hosp, Div Holist & Multidisciplinary Med, Taipei 112, Taiwan

[6] Ankylosing Spondylitis Caring Soc ROC, Taipei 110, Taiwan

[7] Fu Jen Catholic Univ, Fu Jen Catholic Univ Hosp, Coll Med, Div Immunol & Rheumatol, New Taipei City 243, Taiwan

来源：

MEDICINA-LITHUANIA | 2023年 / 59卷 / 11期

关键词：

axial spondyloarthritis; ankylosing spondylitis; patient-reported outcomes; disease burden; rheumatologist; Taiwan; ANKYLOSING-SPONDYLITIS; DISEASE-ACTIVITY;

D O I：

10.3390/medicina59111962

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

Background and Objective: The International Map of Axial Spondyloarthritis (IMAS) explores the physical, psychological, and social experiences of patients with axial spondyloarthritis (axSpA). This initiative is now being expanded to Taiwan as the Taiwanese Map of Axial Spondyloarthritis (TMAS). We aim to provide rheumatologists with insights into the perspectives of Taiwanese patients, enabling physicians to better understand the unmet needs of these patients and optimize their management. Materials and Methods: The TMAS is a cross-sectional study gathering data through an online survey of axSpA patients, promoted by the Ankylosing Spondylitis Caring Society of R.O.C. (ASCARES), conducted from July 2017 to March 2018 by Ipsos, and analyzed by the Health & Territory Research (HTR) group of the University of Seville. The questionnaire includes 99 questions that cover domains such as patient profile, diagnosis, habits/lifestyle, employment status, physical/psychological health status, social support, use of healthcare services, and treatments. Results: A total of 112 axSpA patients were included in this survey. The mean age was 38.6 years and 75.0% were male. The average diagnostic delay was 3 years, and 19.6% reported extra-articular manifestations. Out of the 49 respondents who reported HLA-B27 information, 35 were HLA-B27-positive. The disease burden was high, with a mean BASDAI score of 4.9 and 75.9% having a mild to moderate degree of spinal stiffness. Furthermore, they were socially and psychologically burdened, with 88.4% experiencing work-related issues and 25.9% suffering from anxiety. Conclusions: The TMAS sheds light on the overall perspective of axSpA patients in Taiwan. The TMAS shows shorter diagnostic delay compared to patients from the EMAS. However, high disease activity and significant psychological distress still trouble the patients, causing functional impairments and even leading to career failures. Understanding the perspective of axSpA patients can help rheumatologists adjust treatment strategies to their unmet needs and improve their disease outcomes.

引用

页数：9

共 22 条

[1] Withdrawal from labour force due to work disability in patients with ankylosing spondylitis [J].