Investigators involved in the CreakyJoints patient education initiative on June 10 presented preliminary results stemming from the ArthritisPower research registry at the 2016 Annual European Congress of Rheumatology (EULAR) in London, UK.
In an oral presentation at the People with Arthritis and Rheumatism in Europe (PARE) submeeting, investigators from the Global Healthy Living Foundation in Upper Nyack, NY, and the University of Alabama at Birmingham reported the top 10 topics a majority of 400 survey respondents with various arthritides and rheumatologic conditions rated “extremely important.”
These were: How arthritis affects more than just joints (86%); signs a medication is not working (84%); importance of knowing how disease will progress, even if the news is bad (83%); side effects of available drugs, and how these drugs interact (82%); the available medications and treatments for your case (80%); how to understand results of monitoring tests (79%); finding the right rheumatologist (76%); how to take an active role in decisions about your care (76%); how your life will change as your disease progresses (74%); and how to speak up and help manage your care when your perspective is different from your doctor’s (73%).
The same investigators also presented a poster showing 47 patients’ top-ranked rheumatic disease educational concerns. These included knowledge about disease and medication, coping, communication, and physician selection.
The researchers concluded that patient-centered education and research should maximally address these questions.
Go to arthritispower.org to learn more about the Arthritis Power Research Network.