Individuals living with Lupus: Findings from the LUPUS UK Members Survey 2014

Abstract

Systemic lupus erythematosus (SLE) is a complex and unpredictable disease, which varies greatly between patients and has a significant impact on an individual’s daily living and quality of life. A better understanding of the patients’ experiences with the disease is vital to the effective management of the disease. LUPUS UK, a national UK registered charity supporting people with systemic and discoid lupus, conducted a UK-wide survey of individuals living with Lupus in order to provide foundation information to support and identify gaps needing further research. An anonymous survey was sent to 5,660 LUPUS UK members in order to obtain demographic, diagnosis, symptom and treatment information. 2,527 surveys were returned by 2,371 females (mean age 56.9 years, SD 13.6) and 156 males, (mean age 60.9 years, SD 15.7). Individuals reported a mean (SD) time to diagnosis from the first symptom of 6.4 (9.5) years, with 47% (n = 1186) initially being given a different diagnosis prior to Lupus. Fatigue/weakness (91%, n = 2299) and joint pain/swelling (77.4%, n = 1957) were the most common symptoms that interfere with daily activities, while 53% (n =1343) noted having problems that make them unable to carry out their usual daily activities. 32%, (n = 806) were also seeking support beyond traditional pharmacological treatments, such as acupuncture and massage. This study highlights the range and frequency of symptoms difficult to live with ona daily basis and support areas needing further research to improve patients’ wellbeing