As the European League Against Rheumatism congress kicks off in Madrid, a new survey highlights knowledge gaps between what patients know about rheumatoid arthritis and how they are managing their disease and paints a worrying picture of the situation in the UK.

The largest global survey of RA patients, sponsored by AbbVie and conducted by Harris Interactive in 42 countries, evaluated results from almost 10,200 adults. Findings show that while 74%  say they know a great deal or a moderate amount about RA, 46% do not recognise that joint damage caused by the disease is irreversible.

Although 91% say they have a good understanding of why it is important to manage their RA, 66% mistakenly agree that a lack of pain means their disease is under control. The survey also found that, compared to those that do not have a disease management plan with their healthcare provider, those that do were nearly twice as likely to feel hopeful (39% vs 23%) and confident (31% vs 16%) when asked how they felt about living with their RA over the past week.

The analysis also reported that about two in five RA patients say that their job/career or ability to work was negatively impacted by their disease, and one in three have had to take days off or stopped working altogether for a period of time.

As for the UK segment of the survey, 61% do not feel their RA is well managed and just 26% say they have a disease management plan in place, compared to 56% globally. Nearly half of UK RA patients (49%) say that their job/career or ability to work was negatively impacted by their disease.

Janice Mooney a former rheumatology nurse and now lecturer in primary care at the University of East Anglia, said that "our medical community does great work in the UK, but there is clearly a need for patients and doctors to work closely together to develop a long-term strategy to manage RA". She added that, if not, "over time, advanced RA can result in permanent joint destruction, disability and loss of work".

AbbVie has set up an initiative (see link) which has the backing of more than 40 advocacy organisations and calls for increased collaboration between doctors and patients.