"We've shown just how debilitating lupus can be in terms of the number of patients having to stop work, change their jobs or apply for sick leave. The survey shows lupus is a condition that has a tremendous capacity to wreck lives," said Professor David Isenberg, Director of Rheumatology at University College, London, one of the authors of the study.
The validated survey - designed by patients from the charity Lupus Europe in conjunction with clinical experts -was distributed online in five European languages, using emails, social media (twitter, facebook and lupus chat rooms) lupus organization websites and in national lupus magazines. Questions ranged from those collecting information on lupus diagnosis, work and careers to patient reported outcomes assessing fatigue, work impairment and lupus specific health related quality of life measures.
Results showed that 70% of responders reported that lupus had affected their careers, 27% had needed to apply for long term sick, 28% had needed to apply for a social security disability allowances and that only 52% were in current employment. Furthermore the survey revealed that 28% of responders reported that they had needed to change careers as a result of their condition within the first year of diagnosis. Of those respondents who were employed 60% reported that the disease had led to a reduction in their working hours by more than half.
Yvonne Norton, chair of Lupus Europe and vice chair of Lupus UK, said:
"Lupus really affects patient's ability to work. Not only do they suffer from the financial consequences of stopping work, but they need to face the psychological issue that they've set off on one career pathway, then suddenly they've got lupus and are forced to change direction."
Health care professionals (HCPs), she said, have a major role to play in supporting patients.
"From the survey we can see that the first year after diagnosis is a key time for helping patients stay in employment. HCPs can teach patients how to pace their lives to avoid fatigue, show them how to use makeup to camouflage rash and point them to occupational therapy equipment. Getting help in place early stops people from reaching a crisis point and having to give up work."
The situation, she added, could be further helped by increasing the number of specialist lupus nurses who play an important role in coordinating care. "Currently there are only 18 specialist lupus nurses in the UK - we'd like to see one in every hospital," she said.
The prospect of new agents on the horizon, such as B cell depletion and interferon alpha inhibitors, said Isenberg, has the potential to a real difference to patient's quality of life and their ability to remain in work.
M Schneider, C Gordon, K Lerstrom, et al. Impact of lupus on fatigue, health-related quality of life and work productivity: results from the Lupus European Online (LEO) survey. EULAR. Abstract FRI0243.