Yoshida Akira, Li Yuan, Maroufy Vahed, Kuwana Masataka, Sazliyana Shaharir Syahrul, Makol Ashima, Sen Parikshit, Lilleker James B, Agarwal Vishwesh, Kadam Esha, Akawatcharangura Goo Phonpen, Day Jessica, Milchert Marcin, Chen Yi-Ming, Dey Dzifa, Velikova Tsvetelina, Saha Sreoshy, Edgar Gracia-Ramos Abraham, Parodis Ioannis, Nikiphorou Elena, Tan Ai Lyn, Nune Arvind, Cavagna Lorenzo, Toro Gutiérrez Carlos Enrique, Caballero-Uribe Carlo Vinicio, Saavedra Miguel A, Shinjo Samuel Katsuyuki, Ziade Nelly, El Kibbi Lina, Knitza Johannes, Distler Oliver, Chinoy Hector, Agarwal Vikas, Aggarwal Rohit, Gupta Latika
Department of Allergy and Rheumatology, Nippon Medical School Graduate School of Medicine, Tokyo, Japan.
Department of Biostatistics and Data Science, School of Public Health, University of Texas Health Science Center at Houston, Houston, TX, USA.
Rheumatol Adv Pract. 2024 Mar 4;8(2):rkae028. doi: 10.1093/rap/rkae028. eCollection 2024.
To investigate health-related quality of life in patients with idiopathic inflammatory myopathies (IIMs) compared with those with non-IIM autoimmune rheumatic diseases (AIRDs), non-rheumatic autoimmune diseases (nrAIDs) and without autoimmune diseases (controls) using Patient-Reported Outcome Measurement Information System (PROMIS) instrument data obtained from the second COVID-19 vaccination in autoimmune disease (COVAD-2) e-survey database.
Demographics, diagnosis, comorbidities, disease activity, treatments and PROMIS instrument data were analysed. Primary outcomes were PROMIS Global Physical Health (GPH) and Global Mental Health (GMH) scores. Factors affecting GPH and GMH scores in IIMs were identified using multivariable regression analysis.
We analysed responses from 1582 IIM, 4700 non-IIM AIRD and 545 nrAID patients and 3675 controls gathered through 23 May 2022. The median GPH scores were the lowest in IIM and non-IIM AIRD patients {13 [interquartile range (IQR) 10-15] IIMs 13 [11-15] non-IIM AIRDs 15 [13-17] nrAIDs 17 [15-18] controls, < 0.001}. The median GMH scores in IIM patients were also significantly lower compared with those without autoimmune diseases [13 (IQR 10-15) IIMs 15 (13-17) controls, < 0.001]. Inclusion body myositis, comorbidities, active disease and glucocorticoid use were the determinants of lower GPH scores, whereas overlap myositis, interstitial lung disease, depression, active disease, lower PROMIS Physical Function 10a and higher PROMIS Fatigue 4a scores were associated with lower GMH scores in IIM patients.
Both physical and mental health are significantly impaired in IIM patients, particularly in those with comorbidities and increased fatigue, emphasizing the importance of patient-reported experiences and optimized multidisciplinary care to enhance well-being in people with IIMs.
使用从自身免疫性疾病第二次新冠疫苗接种（COVAD-2）电子调查数据库中获得的患者报告结局测量信息系统（PROMIS）工具数据，调查特发性炎性肌病（IIM）患者与非IIM自身免疫性风湿性疾病（AIRD）、非风湿性自身免疫性疾病（nrAID）患者以及无自身免疫性疾病患者（对照组）的健康相关生活质量。
分析人口统计学、诊断、合并症、疾病活动度、治疗情况和PROMIS工具数据。主要结局指标为PROMIS全球身体健康（GPH）和全球心理健康（GMH）评分。使用多变量回归分析确定影响IIM患者GPH和GMH评分的因素。
我们分析了截至2022年5月23日收集的1582例IIM患者、4700例非IIM AIRD患者、545例nrAID患者和3675例对照组的回复。IIM和非IIM AIRD患者的GPH评分中位数最低{IIM为13[四分位间距（IQR）10 - 15]，非IIM AIRD为13[11 - 15]，nrAID为15[13 - 17]，对照组为17[15 - 18]，P<0.001}。与无自身免疫性疾病的患者相比，IIM患者的GMH评分中位数也显著更低[IIM为13（IQR 为10 - 15），对照组为15（13 - 17），P<0.001]。包涵体肌炎、合并症、活动性疾病和糖皮质激素的使用是GPH评分较低的决定因素，而重叠性肌炎、间质性肺病、抑郁症、活动性疾病、较低的PROMIS身体功能10a评分和较高的PROMIS疲劳4a评分与IIM患者较低的GMH评分相关。
IIM患者的身心健康均受到显著损害，尤其是那些有合并症和疲劳加重的患者，这强调了患者报告经历以及优化多学科护理对提高IIM患者幸福感的重要性。
