One goal of RPF is to create greater understanding of the nature of rheumatoid disease. Describing actual patient experiences is one significant method of contributing to this goal. In 2011, RPF offered an online survey to rheumatoid patients which asked questions about the patients' experiences with rheumatoid arthritis symptoms, treatment and care. An overview of the results from this survey were published in a poster format, which was used as a handout at the 2012 American College of Rheumatology Annual Meeting. RPF has now expanded its reporting of these findings in the form of a published white paper. Click here to download the entire document -- Unmasking Rheumatoid Disease: The Patient Experience of Rheumatoid Arthritis.
The survey results revealed a wide array of patient experiences, many of which fall outside of the typical model of RA that is presented in current medical literature. For example, although exercise is often touted as being beneficial for RA by improving mobility and lessening symptoms, two thirds of the participants reported that exercise caused an increase in RA-related pain.
The survey data also challenge the concept of “morning stiffness” that tends to go away after a patient gets out of bed and begins his or her day, as well as the perception that joint damage and swelling are directly related.
The patient responses recorded from this survey indicate that the majority of patients continue to live with pain and symptoms from RA, despite receiving disease treatment.
Reporting these results is critical to creating a greater understanding of the nature of rheumatoid disease and how it affects individual patients -- which, in turn, can help identify gaps in education and communication and ultimately improve care.
Thank you to all who took the time to complete our original survey. Your responses made it possible to publish this report and make your experiences known.