Researchers have developed a new online resource after identifying a need to provide patients who have lupus with quality information that they can access online, according to a press release from EULAR. The new findings were presented by Karakikla-Mitsakou et al at the EULAR 2023 Congress and simultaneously published in the Annals of the Rheumatic Diseases. Experts explained that a large amount of information online may be misleading or lack scientific evidence—which could confuse patients and ultimately lead to poor disease management and worsening symptoms. Additionally, most of the factual information presented to patients through the therapeutic patient education program is not available in languages other than English and potentially excludes a majority of those who reside in Europe. The researchers highlighted that the new resource—which went live on May 10, 2023—was designed to educate English and non-English–speaking patients about lupus by eliminating the barriers to quality information access. The researchers reported that there are currently 11 languages available for patients to select, but they are currently working on translating information for 7 more languages. The researchers hope that the resource can inspire greater patient-physician communication and aid patients in managing their lupus at home. Patients can access the new online resource at lupus100.org.
June 09, 2023