Results from an international online survey, carried out by UCB in conjunction with Lupus Europe and the Lupus Foundation of America, the two principal advocacy groups that represent people with lupus, were presented during the EULAR (European League Against Rheumatism) congress at a symposium entitled “Lupus – considering the future”.
David Isenberg (professor of rheumatology at University College Hospital London), the symposium chair, commented: “Lupus is unpredictable. For some people the effects are more benign, but for others, as the survey shows, the disease can have a huge detrimental impact. For all patients, lupus specialists should work via a multidisciplinary approach tailoring care to the individual needs of the patient.”
He continued: “Because lupus is a complex disease affecting multiple body systems, the development of effective drugs with a favourable risk:benefit profile is a major challenge – the new biological treatments seem to offer hope, but we must wait until the results of ongoing trials are known.”
The survey was completed by more than 1,000 people living with lupus, and the results provide an insight into the impact the condition has on individuals affected by the disease.
People with lupus from Europe and the USA reported that the three areas where the disease most significantly impacts their lives are career, physical wellbeing and everyday activities. Forty-five percent of the survey respondents in Europe cited career as the area where lupus has a highly significant affect, almost mirroring the 44% reported by respondents in the USA. Twenty-eight percent of the European respondents (n=85) and 29% of those in the USA (n=154) reported being not employed due to lupus. Fifty-two percent of people with lupus from Europe (n=162) and 50% (n=268) in the USA reported that their disease caused them to miss work from one day to more than 30 days of absence.
Similar findings were observed in the effect of lupus on physical wellbeing, with 41% of sufferers in Europe and 49% in the USA reporting that lupus highly significantly affected their physical wellbeing. Fatigue was the most common symptom reported, by 85% of people from Europe (n=277) and 95% from the USA (n=512), followed by arthritis and muscle pain with responses of 83% coming from Europe (n=270) and 91% from the USA (n=492). Negative impact on everyday life activities was the third most reported effect of lupus, with impacts such as inability to go shopping and difficulty in commencing activity following waking up. Thirty-one percent of European respondents cited lupus as having a highly significant affect on this, compared with 42% of US respondents.
There have been no new dedicated treatments for lupus in the past 50 years. At present, NSAIDs, antimalarials, corticosteroids and cytotoxics/immunosuppressants are the main therapies used in the management of lupus.