SLE-UPDATE Study Finds Reducing Pain, Fatigue, and Flares are Top Treatment Goals for People with Lupus


WASHINGTON, June 28, 2021 /PRNewswire/ -- Findings from a study of 500 people with lupus published in Rheumatology and Therapy indicate a high level of burden with current treatments and unmet needs in managing lupus symptoms. The study, "Patient Experiences, Satisfaction, and Expectations with Current Systemic Lupus Erythematosus Treatment: Results of the SLE-UPDATE Survey," was conducted by the Lupus Foundation of America and Eli Lilly and Company, and highlights the importance of patient reported symptoms and treatment goals to improve quality of life.

The most prominent systemic lupus erythematosus (SLE) symptoms reported by study participants were fatigue (69%), joint stiffness (57%), and pain (pain or swelling in joints 53%, and muscle pain 52%), with reducing these symptoms as the top treatment goals for people with lupus, in addition to reducing the frequency or severity of flares (times of active disease activity). While survey respondents reported a level of satisfaction with their treatments (ranging from 55 – 94%), there were several reasons for perceived treatment burdens, including an inconvenient process for administrating treatments and experiencing or having to monitor for side effects.

The SLE-UPDATE study is a follow-up study to the Lupus Foundation of America and Eli Lilly and Company UNVEIL survey from 2014 which examined the burden of SLE for patients and caregivers in the US. This further study provides experiences and perspectives with current SLE treatments.

"The voice of people with lupus is incredibly important when understanding treatment needs. It's critical to take into consideration the lupus symptoms that have the greatest impact on their quality of life, such as fatigue and pain, which can affect ability to work, completion of daily tasks or participation in activities," shared Stevan W. Gibson, president and CEO, Lupus Foundation of America. "In partnership with Eli Lilly and Company, this study shows why people with lupus need to be heard more when shaping their current treatment regimens, and in helping to guide where future breakthroughs are needed to improve disease management and quality of life."

The study also found that while three quarters of respondents (76.6%) shared that their physician's goals for their therapy matched their own goals, most participants (63%) indicated that their physicians had not actually asked about their treatment goals during the past three months.

"These findings reveal a need to improve patient and physician communication around treatment goals and demonstrate the importance of continuous discussions around treatment experiences, satisfaction and decision making," said Diane L. Kamen, MD, MSCR, Associate Professor of Medicine, Division of Rheumatology and Immunology, Medical University of South Carolina, and Lupus Foundation of America Medical-Scientific Advisory Council member. "Prioritizing these conversations and taking into consideration patient input around symptoms that are most bothersome could improve shared decision making in setting and tracking treatment goals, while also improving patient quality of life."

Read the full study here and check out an infographic highlighting findings from the study.

About Eli Lilly and Company
Lilly is a global health care leader that unites caring with discovery to create medicines that make life better for people around the world. We were founded more than a century ago by a man committed to creating high-quality medicines that meet real needs, and today we remain true to that mission in all our work. Across the globe, Lilly employees work to discover and bring life-changing medicines to those who need them, improve the understanding and management of disease, and give back to communities through philanthropy and volunteerism. To learn more about Lilly, please visit us at and

About the Lupus Foundation of America
The Lupus Foundation of America is the national force devoted to solving the mystery of lupus, one of the world's cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, we lead the fight to improve the quality of life for all people affected by lupus. Learn more about the Lupus Foundation of America at

Media Contact:
Mike Donnelly
(202) 349-1162


Cision View original content to download multimedia:

SOURCE Lupus Foundation of America


Back to news