The use of glucocorticoids has always had a negative connotation among patients. Within the general public the beliefs still stand that the side effects cause more harm than that this medication is helping the patient. Pressure from the environment also keeps people away from the treatment with GC, as well as confrontation with visible side effects.
But not only patients, also some health professionals tend to believe GC are more harmful than good. They are especially reluctant to prescribe high doses, although for some conditions this could be lifesaving.
Patients often do a Google search on the internet when prescribed new medication. Reading these awful stories, having doubtful information and the pressure from their peers and consulting a doctor who is not convinced of the benefits of GC, might make them refuse to start treatment.
The EULAR recommendations on the use of GC can help change this perception among patients' and clinicians' communities. These recommendations are now available in a lay version which means also people with a non-medical background can read and understand the important messages. To change the view of patients, but also GP's and other health care professionals, it would be worthwhile to spread this information. Patient and scientific organisations can play an important role in the implementation.
In Flanders, we have already made the translation and put the lay version on the website, together with the original manuscript. Some quotes of people who have read the recommendations show these guidelines are also valuable for patients.
“Finally, this is medical information that I can understand! This is useful for me”
“These recommendations give information in a clear and comprehensive way. They allow me to contribute in the process to get the best possible care for me. I can now make well-informed decisions and can ask more direct questions to my rheumatologist.”
“It is nice to know patients were involved in developing these recommendations. This means also our concerns were heard.”
This lecture will feature results of a survey among Flemish and Dutch patients about their view on GC as well as their ideas to use lay versions of scientific publications.
Disclosure of Interest None declared