NutritionEULAR Highlights The Impact Of Lupus On Patients' Lives
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 called, "Lupus - considering the future."
Professor David Isenberg (Professor of Rheumatology at University College Hospital London), the symposium chairman, 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 multi-disciplinary 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."
Although not a scientific random sample of the patient population at large, the results provide an insight into the impact lupus has on individuals affected by the disease. The survey was completed by more than 1000 people living with lupus. Lupus can also be called systemic lupus erythematosus or SLE.
People with lupus from Europe and the U.S. reported that the three areas where the disease most significantly impacts their lives were career, physical well being and everyday activities. Forty five percent of the survey respondents in Europe cited career as the area where lupus had a highly significant affect, almost mirroring the 44% reported by respondents in the U.S. Twenty-eight percent of the European respondents (n=85) and 29% of those in the U.S. (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 U.S. 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 affect of lupus on physical well being with 41% of sufferers in Europe and 49% in U.S. reporting that lupus highly significant affected their physical well-being. Fatigue was the most common symptom reported by 85% of people from Europe (n= 277) and 95% from U.S. (n= 512), followed by arthritis and muscle pain with responses of 83% coming from Europe (n= 270) and 91% from U.S. (n=492). Negative impact on everyday life activities was the third most reported effect of lupus, with impacts such as the ability 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 to 42% of U.S. respondents.
There have been no new dedicated treatments for lupus in the past 50 years. At present, NSAIDs (Non-steroidal anti-inflammatory drugs), antimalarials, corticosteroids and cytotoxics/immunosuppressants, are the main therapies used in the management of lupus.
Europe
-- 78% reported that lupus has affected their career (n=311):
1. 45% highly significant affect, 18% noticeable affect, 15% slight affect
1. 28% not employed due to lupus (n=85)
2. 52% are absent from work for between 1-30 days due to lupus (n=162)
-- 89% reported that lupus has affected their physical well-being (n=322):
1. 41% highly significant affect, 31% noticeable affect, 17% slight affect
-- 85% reported that lupus has affected their ability to do everyday tasks e.g. go shopping, get up in the morning (n=311):
1. 31% highly significant affect, 28% noticeable affect, 26% slight affect
1. 85% experience fatigue (n=277) and 67% (n=218) report fatigue as the most severe symptom of lupus
2. 83% experience arthritis and muscle pain/weakness (n=270) and 63% (n=204) report arthritis and muscle pain as the second most severe symptom of lupus
US
-- 84% reported that lupus has affected their career (n=551):
1. 44% highly significant affect, 21% noticeable affect, 19% slight affect
3. 29% not employed due to lupus (n=154)
4. 50% are absent from work for between 1-30 days due to lupus (n=268)
-- 95% reported that lupus has affected their physical well-being (n=556):
1. 49% highly significant affect, 32% noticeable affect, 14% slight affect
-- 91% reported that lupus has affected their ability to do everyday tasks e.g. go shopping, get up in the morning (n=550):
1. 42% highly significant affect, 30% noticeable affect, 19% slight affect
3. 95% report fatigue as a common symptom of lupus (n=512)
4. 91% reported arthritis, muscle pain/weakness as a common symptom of lupus (n=492)
UCB