Pos1441-Pare Burden of Disease in Idiopathic Inflammatory Myopathies: First Perspectives From a Patient-Led Research Study

Background: Idiopathic Inflammatory Myopathies (IIM) are a heterogeneous group of autoimmune diseases causing proximal muscle weakness and other extra-muscular features, such as skin rashes, interstitial lung disease, arthritis, and gastrointestinal tract involvement. Much has been written about the clinical diagnosis and treatment of IIM, but the effect of IIM on patients' quality of life remains understudied. For this reason, we performed a prospective cross-sectional survey study to assess the physical, emotional, social and financial challenges of patients with IIMs. Objectives: the study's objectives are focused on assessing the impact of IIM on patients' quality of life, understanding the heterogeneity within the IIM group, addressing the lack of research in this area, and using a prospective cross-sectional survey to gather relevant data Methods: An anonymous online survey to assess biosocial disease burden in IIM patients was developed by Myositis Support and Understanding (MSU), a non-profit patient-led advocacy organization and the University of Texas Southwestern (UTSW). The survey was distributed via RedCAP to MSU members worldwide, to assess information about demographics, diagnostics, and physiological and psychological effects of IIM from a patient's perspective. Results: Demographics: 583 patients (71% female, 29% male; 88% white/Caucasian; age range: 18 to 90) responded to the survey conducted in May 2022. Self-reported diagnosis: Inclusion Body Myositis (40%), Dermatomyositis (26%), Polymyositis (11%), Anti-Synthetase Syndrome (10%), Immune-mediated necrotizing myopathy (7%), and others (6%). Medical Care: Rheumatologists care for 50% of these patients, along with neurologists, neuromuscular specialists, pulmonologists, dermatologists, and immunologists. For diagnosis, 69% had muscle biopsies, and 36% had antibody testing. 63% were diagnosed after 1 year, and 52% traveled further than 20 miles for treatment despite 44% requiring mobility aids. Mobility: More than 50% had difficulty doing household chores, carrying groceries, or climbing a flight of stairs. About 25% were unable or had much trouble dressing and toileting. Emotional & Financial Burden: 38% felt isolated and a third expressed negativity and lacked confidence to maintain relationships. More than 30% had financial difficulty that necessitated reducing routine expenses and using savings. Musculoskeletal: 46% experienced 5 or more falls, 24% had a fracture since diagnosis, and 33% had fractures that required orthopedic surgery. 51% needed pain medications, with 37% experiencing joint pain for more than 5 years. Conclusion: In this study, we provide a holistic view of the burden of disease in patients with IIM in terms of social, financial, physical, and psychological effects. Addressing this burden may be alleviated through early diagnosis, targeted therapies, mental health interventions, and comprehensive support services. Overall, a comprehensive multidisciplinary care approach is likely essential to improve patient outcomes. REFERENCES: 1 Ana Campar, Inês Alves, Ana Martins da Silva, Fátima Farinha, Carlos Vasconcelos, Idiopathic inflammatory myopathies – The burden of disease: Cohort analysis focusing on damage and comorbidities, Autoimmunity Reviews, Volume 22, Issue 12, 2023, 103455, ISSN 1568-9972, https://doi.org/10.1016/j.autrev.2023.103455. Acknowledgements: MSU & UTSW acknowledge the support of our patient community, without whom this work would not be possible. Disclosure of Interests: Salman Bhai Dr. Bhai has declared financial relationships as an independent contractor with two companies: KabaFusion, related to Myositis Lecture/IVIG therapy, and Alnylam, related to Porphyria., MANUEL LUBINUS: None declared, Karen Cheng Roche, Galapagos, Moderna, Corbus, Karen had previously worked for Roche, Takeda, and Shire. Currently, she volunteers full-time with MSU, Roche and Sire., Yuan-Pai Hu: None declared, Lynn Wilson: None declared, Abhiram Bhashyan: None declared.