Most patients report not having participated in a lupus clinical trial, despite interest
THURSDAY, May 9, 2019 (HealthDay News) — More than 60 percent of patients with lupus report that the disease has a large effect on their emotional and mental well-being, according to a report published online May 9 by the World Lupus Federation.
A 12-question survey was posted on the World Lupus Federation website from April 15 to 29, 2019. A total of 5,073 submissions were received; data were included from 4,559 surveys submitted by people with lupus.
According to the survey, 65.9 percent of participants with lupus have never participated in a clinical trial of a potential new lupus treatment. Most respondents indicated being moderately to extremely interested (24.7 and 50.2 percent, respectively) in learning about opportunities to participate in clinical trials, although 79.7 percent had not previously been asked about their interest in participating in a clinical trial. Of the respondents, 61.6 and 29.3 percent indicated that the disease had a lot or some effect on their emotional and mental well-being, respectively. Most respondents believe that their lupus doctor has a moderate to good understanding (31.4 and 38.3 percent, respectively) of the emotional impact of lupus on mental well-being.
“By raising awareness of the challenges people with lupus face every day, we rally support among the public and government leaders to increase funding for research, education, and support services that can improve the quality of life for everyone affected by lupus,” Steve Gibson, chief executive officer of the Lupus Foundation of America, said in a statement.
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