Social media in myositis care – an exploratory mixed-methods study among myositis patients (SociMyo)

Myositis is a rare autoimmune disease primarily affecting muscles, with potential involvement of the skin, heart, and lungs. Patients often experience delays in diagnosis, lack of adequate information, and limited support for disease management. Social media has emerged as a valuable tool to address these gaps by facilitating information exchange, peer support, and community building. However, its role in myositis care is not yet well understood. This study aims to explore how myositis patients use social media, focusing on shared content, perceived benefits and challenges, and the overall impact on disease management and emotional well-being. A mixed-methods approach was applied, including semi-structured interviews with 11 patients and a netnographic analysis of social media group dedicated to myositis care. Data were analyzed using Kuckartz's structured qualitative content analysis, with coding performed inductively, to identify key themes. Four key themes emerged: (I) Social media as a global platform for sharing experiential knowledge, particularly on symptom management, medication side effects, and coping strategies. (II) Peer support fostering a sense of belonging, emotional exchange, and mutual encouragement through structured discussions and community-driven moderation. (III) Perceived benefits, such as real-time access to patient-driven insights, shared decision-making support, and enhanced communication with healthcare providers. (IV) Perceived drawbacks, including misinformation, privacy concerns, and the absence of professional medical input. Participants emphasized the need for expert involvement to improve content reliability, while also valuing the autonomy and emotional support within these communities. Social media platforms, particularly closed groups, provide a complementary avenue to traditional care by offering support and knowledge exchange. To maximize their potential, privacy concerns and the integration of professional guidance must be addressed.