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

Study also finds people with lupus report major concern with unmet treatment needs and burdens 

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 (NYSE: LLY), 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.