Global disparities in the treatment of idiopathic inflammatory myopathies: results from an international online survey study.

OBJECTIVES: We aimed to explore current practice and interregional differences in the treatment of idiopathic inflammatory myopathies (IIMs). We triangulated these observations considering countries' gross national income (GNI), disease subtypes, and symptoms using patient-reported information. METHODS: A cross-sectional ancillary analysis of the 'COVID-19 vaccination in auto-immune disease' (COVAD) e-survey containing demographic characteristics, IIM subtypes (DM, PM, IBM, anti-synthetase syndrome [ASSD], immune-mediated necrotizing myopathy [IMNM], overlap myopathies [OM]), current symptoms (surrogate for organ involvement) and treatments (corticosteroids [CS], immunomodulators [IM], i.e. antimalarials, immunosuppressants [IS], IVIG, biologic treatments and targeted-synthetic small molecules). Treatments were presented descriptively according to continents, GNI, IIM and organ involvement, and associated factors were analysed using multivariable binary logistic regressions. RESULTS: Of 18 851 respondents from 94 countries, 1418 with IIM were analysed (age 61 years, 62.5% females). DM (32.4%), IBM (24.5%) and OM (15.8%) were the most common subtypes. Treatment categories included IS (49.4%), CS (38.5%), IM (13.8%) and IVIG (9.4%). Notably, treatments varied across regions, GNI categories (IS mostly used in higher-middle income, IM in lower-middle income, IVIG and biologics largely limited to high-income countries), IIM subtypes (IS and CS associated with ASSD, IM with OM and DM, IVIG with IMNM, and biologic treatments with OM and ASSD) and disease manifestations (IS and CS with dyspnoea). Most inter-regional treatment disparities persisted after multivariable analysis. CONCLUSION: We identified marked regional treatment disparities in a global cohort of IIM. These observations highlight the need for international consensus-driven management guidelines considering patient-centred care and available resources.

Assessment of quality and reliability of YouTube videos for patient and physician education on inflammatory myositis.

INTRODUCTION: YouTube is the second most popular search website worldwide to access health information online. This study was undertaken to assess the reliability and quality of information about myositis on YouTube and delineate attributes of useful videos using standard metrics. METHODS: We conducted a thorough search on YouTube using 9 search terms related to myositis. The inclusion criteria were content related to myositis, English language and acceptable audio-video quality. Duplicates and advertisements were excluded from the analysis. Videos were classified as useful, not very useful or misleading and patient narratives. Reliability was determined using the mDISCERN criteria, quality using the Global Quality Scale (GQS) and JAMA system, using appropriate cut-offs (mDISCERN > 4, GQS > 4, JAMA > 3). RESULTS: Out of a total of 900 videos, 453 were included for the analysis. Seventy-four per cent and 2% provided useful and not very useful information respectively, while 24% were patient narratives. Seventy-one per cent were intended specifically for patients while 69% were for healthcare providers and students. Noteworthily, useful and not very useful videos had similar total views though the number of likes and daily viewership were higher for useful videos (p = 0.024, p = 0.046). Nearly half (47%) of useful videos were by professional medical societies/patient support groups (PSGs) while not very useful ones were by nonmedical media (38%). Physician-predicted usefulness was discordant with score-based usefulness (κ = 0.129). However, GQS emerged as a significant (p = 0.008) predictor of video usefulness in multivariate analysis. CONCLUSION: A large majority of English YouTube videos on myositis provide useful information for patients. Physicians could signpost patients to high-quality useful videos as determined by GQS and sources like professional medical societies and PSGs. Key Points •This study highlights the importance of regulating health information posted online, accessed by millions of people, to gauge the quality of information and to identify and curb misinformation. •It also identifies recommendations for the future for uploading such content on the Internet. •The implications lie in our patients being better informed about their disease as they are important stakeholders in the healthcare decision-making process.