Guidance for Rheumatic Disease Patients Navigating Online Health Information

Rheumatic musculoskeletal diseases (RMD) significantly affect individuals' quality of life and place a considerable economic strain on society. The European Alliance of Associations for Rheumatology (EULAR) emphasizes the importance of patient empowerment through education, particularly in the digital age.

Effective communication between patients and healthcare providers is crucial for optimal treatment outcomes and shared decision-making. A key aspect of this is health literacy, which determines how well individuals understand their condition and utilize health information. Access to reliable online resources has become an integral part of managing RMDs, offering patients a valuable means to seek information and support.

Recent research presented at the 2025 EULAR Congress in Barcelona highlights how patients search for disease-related information online, where they find it, and how it influences their daily management of RMDs. In a study involving 705 patients with rheumatoid arthritis, axial spondyloarthritis, or psoriatic arthritis, most reported using the internet to learn more about their condition.

Findings indicated that over 75% of participants had sought RMD-related information online, with approximately half using social media and health apps. Many performed online searches regularly, often without any external prompts, primarily searching topics like symptoms, treatment effectiveness, side effects, and disease-specific nutrition. Patients mainly relied on search engines and patient organization websites for trustworthy information.

Interestingly, while a small percentage actively participated in online patient forums, a majority expressed confidence in the online sources and encouraged others to use them. Most found the online information easy to understand and well-explained, but fewer discussed their online findings with their rheumatologist. Many reported that online information helped them understand their disease better and alleviated related anxiety or depression, although fewer felt it enhanced their understanding of their treatment.

Ioana Andreica, the study's lead author, pointed out the need for better guidance on how and where patients should search for online health information and how to interpret it effectively. The gap in health literacy can hinder patients’ ability to make informed decisions, highlighting the importance of providing structured support and education.

Overall, the research underscores that while online resources are invaluable, there is a critical need for improved guidance to help patients find accurate information and use it to enhance shared decision-making and health outcomes.

source: https://medicalxpress.com/news/2025-06-guidance-rmd-patients-online.html