(Press-News.org) Recommendations stress that communication impacts treatment outcomes and shared decision-making between patients and physicians. Health literacy is an important aspect in this regard, and a person’s understanding of their condition can impact how they are able to use health information.2 There is growing evidence to suggest that internet-based information is an important tool for improving communication with healthcare professionals – and for many patients it plays a central role in their experience.3
New work presented at the 2025 annual EULAR congress in Barcelona describes a prospective study that was set up in Germany to examine the ways that people with an RMD search online for disease-related information, where they find it, and how they use it in their daily life. Overall, 705 patients with rheumatoid arthritis, axial spondyloarthritis, or psoriatic arthritis took part by completing a questionnaire.
The results showed that over three-quarters had used the internet to look for information about their RMD, while about half of the responders also used social media and health apps. Typically, an online search was performed more than once a week by 13.5% of patients and mostly without being redirected from any other sources. Symptoms, treatment efficacy or adverse events, and disease-specific nutrition were the most frequently searched topics. Free sources in search engines and patient organisation websites were the main information resources used by the responders.
While only 3.0% reported ever having actively participated in a patient forum, 62.4% did not deny using internet-based sources and said they would encourage others to use them.
Overall, the online information was considered to be easy to understand for 79.8%, and 62.3% reported that any medical terminology was well explained. However, only 42.6% of the patients subsequently discussed the information they had found online with their rheumatologist.
Additionally, 79.0% patients considered that the information they found online helped them to better understand their disease, and nearly half of the responders felt that it has helped their RMD-related anxiety or depression, while only 46.5% reported that it had helped them to better understand their therapy.
Ioana Andreica, lead author on the work, said “online disease-related information is frequently searched by patients with an RMD, but there is a lack in the guidance on where and how to look, and how to use the information that is retrieved.”
The findings suggest that there is still a large gap to close in order to achieve sufficient health literacy and support shared decision for people with RMD.
Source
Andreica I, et al. How do patients with inflammatory rheumatic musculoskeletal diseases (RMD) search, find and use online-based disease-related information in their daily life. Presented at EULAR 2025; OP0122-PARE. Ann Rheum Dis 2025; DOI: 10.1136/annrheumdis-2025-eular.D139.
References
1. Zangi HA, et al. EULAR recommendations for patient education for people with inflammatory arthritis. Ann Rheum Dis 2015;74(6):954–62. DOI: 10.1136/annrheumdis-2014-206807.
2. Elangovan S, et al. The usefulness and validity of English-language videos on YouTube as an educational resource for spondyloarthritis. Clin Rheumatol 2021;40(4):1567–73. DOI: 10.1007/s10067-020-05377-w.
3. Muir J, et al. Exploring the role of online health information and social media in the illness experience of arthritis-related fatigue: A focus group study. Musculoskeletal Care 2020;18(4):501–9. DOI: 10.1002/msc.1494.
About EULAR
EULAR is the European umbrella organisation representing scientific societies, health professional associations and organisations for people with rheumatic and musculoskeletal diseases (RMDs). EULAR aims to reduce the impact of RMDs on individuals and society, as well as improve RMD treatments, prevention, and rehabilitation. To this end, EULAR fosters excellence in rheumatology education and research, promotes the translation of research advances into daily care, and advocates for the recognition of the needs of those living with RMDs by EU institutions.
Contact
EULAR Communications, communications@eular.org
Notes to Editors
EULAR Recommendations
EULAR School of Rheumatology
EULAR Press Releases
END
Online information for patients needs guidance
2025-06-13
ELSE PRESS RELEASES FROM THIS DATE:
The many ways that AI enters rheumatology
2025-06-13
High-resolution computed tomography (HRCT) is the standard to diagnose and assess progression in interstitial lung disease (ILD), a key feature in systemic sclerosis (SSc). But AI-assisted interpretation has the potential to improve the quantification and characterisation of SSc-ILD, making it a powerful tool for monitoring. Francesca Motta offered new data from an observational study pitting AI-assisted analysis against two radiologists with expertise in thoracic imaging. Results showed that the AI outperformed visual scoring in assessing the progression of fibrosis in patients with SSc-ILD, and showed more significant correlation with values from pulmonary ...
Pregnancy outcomes in autoinflammatory disease
2025-06-13
To address this, a French multi-centre prospective pregnancy observational cohort was set up, to analyse disease activity, treatment, pregnancy outcomes, delivery, and neonatal health. The work – presented at the 2025 annual congress of EULAR – showcased findings from 97 women with an autoinflammatory disease. The most common diagnoses were FMF (81%), followed by undifferentiated systemic autoinflammatory diseases (USAID), tumour necrosis factor receptor-associated periodic syndrome (TRAPS), cryopyrin-associated periodic syndromes (CAPS), Still's disease, recurrent pericarditis, mevalonate kinase deficiency, A20 haploinsufficiency, and other ...
The value of physical activity for people with RMD
2025-06-13
Several sessions at the 2025 annual congress of EULAR, which took place in Barcelona, focused on the value of physical activity for people with a variety of RMD – as well as the potential barriers to implementing these programs in the real world.
Previous trials have demonstrated that long-standing, personalised supervised exercise therapy is more effective than usual care after 1 year in people with severe functional limitations due to rheumatoid arthritis (RA) or axial spondyloarthritis (axSpA).3,4 David Ueckert and colleagues set out to evaluate ...
First data from the EULAR RheumaFacts project
2025-06-13
New work presented at the 2025 congress of EULAR – The European Alliance of Associations for Rheumatology – in Barcelona described RMD health-related indicators from all EULAR member countries, collected as part of the RheumaFacts project – a study identifying potential inequities between countries.
Data were collected on a diverse range of topics, including access to reimbursed physiotherapy and psychological care, the possibility for patients to self-refer to rheumatologists in the public sector, the number of rheumatology departments and rheumatologists, and treatment availability. So far, 31 countries have submitted data.
The ...
Research spotlight: Preventing stalling to improve CAR-T cells’ efficacy against tumors
2025-06-13
Marcela Maus, MD, PhD, director of the Cellular Immunotherapy Program and the Paula J. O'Keeffe Endowed Chair of the Mass General Cancer Center, is senior author and Stefanie Bailey, PhD, Hana Takei, and Giulia Escobar, PhD of the Krantz Family Center for Cancer Research at Massachusetts General Hospital are co-lead authors of a paper published in Science Translational Medicine, “IFN-g-resistant CD28 CAR-T cells demonstrate increased survival, efficacy, and durability in multiple murine ...
c-Fos expression differentially acts in the healthy brain compared with Alzheimer’s disease
2025-06-13
Immediate-early genes (IEGs), including c-Fos, are integral to the brain's response to stimuli. Initially identified as a proto-oncogene, c-Fos is essential for neural activity, synaptic plasticity, and stress responses. While its transient expression supports memory formation in healthy brains, chronic overexpression in AD exacerbates neurotoxicity and cognitive decline. This review synthesizes findings from postmortem studies, animal models, and cell cultures to elucidate the dual roles of c-Fos and its mechanisms in AD pathogenesis.
Expression of c-Fos in Brain Regions and Cell Types
c-Fos is expressed in specific brain regions such as the hippocampus, amygdala, and cortex, ...
Computed tomography perfusion and angiography for death by neurologic criteria
2025-06-13
About The Study: The observed sensitivity and specificity measures for computed tomography perfusion and computed tomography angiography as an ancillary test for death by neurologic criteria did not meet the prespecified validation threshold of greater than 98%. Clinical examination remains the cornerstone of death by neurologic criteria, and ancillary imaging should be interpreted cautiously within a comprehensive clinical assessment.
Corresponding Author: To contact the corresponding author, Michael Chasse, MD, PhD, email michael.chasse@umontreal.ca.
To access ...
New tool could help Florida homeowners weather flood risks, lower insurance costs
2025-06-13
With flood risks increasing from extreme weather events like hurricanes and even routine plumbing issues, a team from the University of Florida’s College of Design, Construction and Planning is helping Florida homeowners make smarter choices about building materials and interior finishes that better protect their homes and potentially save on their insurance premiums.
Lisa Platt, Ph.D., an assistant professor in the department of interior design and a researcher within the Florida Institute for Built Environment Resilience, or FIBER, and Arezoo Zeinali, a graduate research assistant in Platt’s Design Dynamics ...
Researchers develop a rapid method for building vascular organoids
2025-06-13
Blood vessels are essential to nearly all tissues, delivering nutrients and oxygen, regulating hemostasis, and modulating inflammation. Recreating functional vascular networks is foundational to both basic and translational vascular biology, however current methods to make blood vessels from stem cells are often slow, inefficient, or lack the complexity needed for therapy.
In this study, researchers developed a fast and defined method to build vascular organoids—3D microvascular networks—from human stem cells. By ...
Cannabis legalization and opioid use disorder in Veterans Health Administration patients
2025-06-13
About The Study: The results of this cohort study suggest that medical cannabis laws and recreational cannabis laws enactment was associated with greater opioid use disorder (OUD) prevalence in Veterans Health Administration patients over time, with the greatest increases among middle-aged and older patients and those with chronic pain. The findings did not support state cannabis legalization as a means of reducing the burden of OUD during the ongoing opioid epidemic.
Corresponding Author: To contact the corresponding author, Deborah S. Hasin, PhD, email dsh2@cumc.columbia.edu.
To access the embargoed study: Visit our For The Media website at this link ...