Impaired health-related quality of life in idiopathic inflammatory myopathies: a cross-sectional analysis from the COVAD-2 e-survey

• Published in: Rheumatology advances in practice Vol. 8; no. 2; p. rkae028
• Main Authors: 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
• Format: Journal Article
• Language: English
• Published: England Oxford University Press 2024
• Subjects: Comorbidity; Comparative analysis; Computer industry; Corticosteroids; Depression, Mental; e-survey; Fatigue; Klinisk medicin; Life Sciences; Lung diseases; Measuring instruments; Medical research; Medicin och hälsovetenskap; Medicine, Experimental; Mental health; myositis; Original; patient-reported outcome measures; Pharmaceutical industry; Psykologi; Psykologi (exklusive tillämpad psykologi); quality of life; Reumatologi och inflammation; Samhällsvetenskap; Santé publique et épidémiologie; Vaccination; United States; United Kingdom; Australia; France; Switzerland; Germany; India; e-survey; quality of life; patient-reported outcome measures; myositis
• ISSN: 2514-1775; 2514-1775
• DOI: 10.1093/rap/rkae028

Abstract
Objectives
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.
Methods
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.
Results
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 vs 13 [11–15] non-IIM AIRDs vs 15 [13–17] nrAIDs vs 17 [15–18] controls, P < 0.001}. The median GMH scores in IIM patients were also significantly lower compared with those without autoimmune diseases [13 (IQR 10–15) IIMs vs 15 (13–17) controls, P < 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.
Conclusion
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.
Graphical abstract
Graphical Abstract
Lay Summary
What does this mean for patients?
The COVAD-2 e-survey of >10 000 responses sheds light on the health-related quality of life (HRQoL) of individuals living with idiopathic inflammatory myopathies (IIMs) and other systemic autoimmune conditions. Our results highlight significant impairment in both physical and mental HRQoL among those with IIMs. Specific disease factors (subtypes, disease activity), comorbidities (lung disease, depression), symptoms (fatigue) and treatments (steroids) were associated with poorer HRQoL. This study demonstrates the need to address patient-reported experiences like fatigue and mental health to enhance the well-being of those with IIMs. Our findings stress the importance of developing personalized healthcare approaches targeting the distinct challenges faced by individuals with autoimmune conditions, ultimately striving for better outcomes and improved quality of life.