Disease characteristics and medications use in idiopathic inflammatory myopathy: a multi-centre prospective observational study of decentralized remote vs. traditional clinic enrolment

Abstract

Objectives: Idiopathic inflammatory myopathies (IIM) are rare and characterized by heterogeneous manifestations and clinical trajectories. Utilizing tele-research methods has the potential to improve participant recruitment and advance the understanding of the disease. We aimed to evaluate disease characteristics in IIM patients throughout the USA and compare these parameters between patients recruited remotely through mobile application or website vs those recruited locally in myositis clinics. Methods: ‘Myositis Patient Centered Tele-Research’ (My PACER) is a multicentre prospective observational study of US IIM subjects, competitively recruited through traditional in-person clinic visits [centre-based cohort (CBC)] and remotely using mobile application or website and social media [tele-research cohort (TRC)]. Data collection comprised baseline demographic and clinical variables, encompassing symptoms, organ involvement, diagnostic tests results and medication use. Results: The study included 120 IIM patients, 82 in the TRC and 38 in the CBC. The average age was 55 ± 13.4, 75% females and 81% Caucasians. Both cohorts exhibited similar demographic characteristics. Overall, 41% dermatomyositis, 27% polymyositis, 23% anti-synthetase syndrome, and 9% necrotizing myositis patients were enrolled, with comparable subtypes prevalence among cohorts (P ¼ 0.85). The groups demonstrated similarities in multiple clinical factors, including muscle enzymes, diagnostic delay, employment status, various patient and physician-reported outcomes, functional tests, and the frequency of abnormal findings in chest CT, pulmonary function tests and electromyography. TRC patients received biologics and csDMARDs more frequently (P < 0.001 and P ¼ 0.013, respectively). Conclusion: Tele-research recruitment yielded a patient cohort resembling traditionally recruited patients demographically and clinically, indicating its effectiveness for robust and diverse patient recruitment in clinical studies.