More than 6 in 10 (61.6%) people living with lupus say the disease has had ‘a lot’ of effect on their emotional and mental well-being, according to data from a global online survey of nearly 5,000 people with lupus released by the World Lupus Federation for World Lupus Day on May 10. About one-third of respondents noted the disease had at least ‘some’ effect.
The survey also revealed that 8 in 10 people with lupus are interested in joining a support group that focuses on improving their emotional and mental well-being. The psychological impact of lupus can be as devastating as its physical complications, which affects at least five million people worldwide.
Lupus is a chronic autoimmune disease where the immune system is out of balance with self, producing antibodies that target healthy tissue and organs. The disease most often affects the skin, joints, kidneys, brain, heart, and lungs. While therapies are available to help manage symptoms, there is no cure for lupus. About 40 different treatments are in various stages of clinical development and testing, offering hope for better management of the disease in the future.
Three in four survey respondents indicated they were interested in learning about new opportunities to participate in a clinical trial of a potential new treatment for lupus; however, 80% of respondents had never been asked by their doctor whether they might be interested in joining such a trial.
The survey results reinforce patient-centered ‘calls to action’ included in a new report, A Vision for Lupus, that will be published online by GSK at visionforlupus.org for World Lupus Day. Representatives of the World Lupus Federation served on the Global Multidisciplinary Steering Committee to develop the report, which highlights gaps and inconsistencies in care and areas for action to address these gaps that can often exist for people with lupus and their families.
The action calls include the need to raise awareness of clinical trials to facilitate participation by people with lupus, and programs to help people with lupus feel more acknowledged, understood and supported through their disease journey.