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12 June 2019
Survey of 1,100 gout patients shows high unmet need and low expectations of treatment
A voice for gout patients
A pan-European survey initiated by Grünenthal and presented at this year’s annual European Congress of Rheumatology (EULAR 2019) in Madrid indicates that gout is being diagnosed late and is not controlled effectively or not monitored regularly enough.
Gout can develop in people who have high levels of uric acid in their blood when the acid forms needle-like crystals in a joint. This can make the joints swell up and feel tender or hot, and also causes sudden and severe episodes of pain (known as flares). Around 2.5 percent of people in Europe are affected by gout – and it’s becoming increasingly common. Gout is treatable and can be effectively managed in a majority of patients. There is limited information available about the impact of gout on patients, and more generally on society. For this reason, Grünenthal recently joined forces with partners from patient organisations, across academia and industry to gain deeper insights into patients’ experiences of this condition and to develop recommendations for how to improve management of gout.
Thanks to support from 12 patient organisations, 1,100 patients from 14 European countries took part in the “Patient Voice in Gout” study by completing a 15-minute online survey. The results have now been analysed and will be presented at the EULAR (European League Against Rheumatism) congress that takes place in Madrid from 12-15 June 2019. Some of the key findings have also been integrated into an infographic: These include the fact that 22 percent of respondents were not diagnosed until they had suffered 4 or more flares. Once diagnosed, 59 percent stated that they do not have regular follow-up appointments and 53 percent do not have their uric acid levels monitored often enough. This is particularly striking because of the impact gout has on patients’ lives: 59 percent of respondents said gout impacts their ability to walk, while 40 percent of patients who had suffered 3 or more flares within the last year said their self-esteem had dropped.
Perhaps the most striking outcome of this survey is that eight out of 10 patients claim they are satisfied with their current treatment – even though the words they most commonly associate with gout are inconvenience, agony and frustration. 10% of patients report that they or one of their family members lost a job or retired due to their gout. Many gout patients hide their disease or feel embarrassed about discussing their condition with a doctor. Instead, this study shows that they suffer in silence. As a result, there is a clear need for action to provide patients and healthcare professionals better education about the causes of gout, as well as effective diagnosis and monitoring.