Study Reveals Shockingly High Rates of Incorrect Lupus Diagnosis
A Lupus Foundation of America study of over 3,000 adults with lupus found that 46.5 percent report being misdiagnosed with something other than lupus at the start of their journey with this unpredictable and life-altering disease. Additionally, more than half (54.1 percent) were told that there was nothing wrong with them or that their symptoms were psychological.
The data was included in a cross-sectional study, “Lupus Diagnosis: Process and Patient Experience,” released by the Lupus Foundation of America today at the American College of Rheumatology (ACR) Annual Scientific Meeting (ACR) in San Diego. The study demonstrates the urgent need to shorten the time to obtain an accurate diagnosis – so people with lupus can begin critical treatment that will reduce damage to vital organs, such as the kidneys, heart, lungs and brain.
Previous studies have shown that it takes nearly six years from the time people with lupus first notice symptoms until they obtain a correct diagnosis. Damage caused by lupus increases the likelihood of developing long-term health complications, making early diagnosis crucial for people with lupus – an important strategic objective of the Lupus Foundation of America.
“This study is so valuable because it’s the first in-depth look at the patient diagnostic experience,” said R. Paola Daly, Director of Research at the Lupus Foundation of America. “The results of this study will help us understand and in-turn, prevent the specific factors that lead to unacceptable delays in receiving a lupus diagnosis.”
Through this study, the Lupus Foundation of America sought to identify barriers that impede lupus diagnosis and ways to improve its accuracy. Nearly 40 percent of those with lupus waited more than one year from the onset of symptoms to receive an accurate diagnosis. These findings underscore the importance of providing continuing medical education about lupus symptoms to both primary and specialty healthcare providers.
During the ACR Meeting (November 3-8), the Lupus Foundation of America will conduct on-site Facebook Live interviews with lupus researchers and other health professionals about the findings from their research studies. More than 35 Lupus Foundation of America funded researchers will be presenting on findings from their lupus studies. To learn more about the Facebook Live interviews, visit our Facebook event.