MADRID – European gout patients in a survey were generally satisfied with their care -- even among those having frequent acute attacks suggesting suboptimal management, researchers said here.
With more than 1,000 respondents, the survey found that of 164 patients who reported at least five gout flares in the past year, 62% said they were satisfied with their care, said Marc de Meulemeester, MD, a general practitioner and clinical trial investigator in Charleroi, Belgium.
At the annual meeting of the European League Against Rheumatism (EULAR), Meulemeester said that, overall, about 79% of patients with gout reported satisfaction with their treatment, even though more than 70% said they'd experienced at least one gout flare during the year.
Those patients expressed serious discomfort and pain when those flares erupted, he said at a press conference. For example:
- A Spanish patient declared: "It was an excruciating pain in my big toe, which makes me want to cut it off. It completely stops my life."
- An Italian patient described the attack as "a very painful experience. It is like a knife in the foot."
- One patient in Ireland recalled, "It feel like something eating your bone from the inside. It prevents normal physical activity and causes anxiety."
The survey, conducted with the help of numerous gout support and care groups, also found that primary care physicians handle the bulk of gout care, with rheumatologists taking a decidedly secondary role, de Meulemeester said.
More than 70% of respondents were diagnosed by general practitioners with less than 10% diagnosed by rheumatologists. About 68% of general practitioners were the physicians who discussed the disease with patients compared with less than 10% for rheumatologists. And well over half of respondents said they get their treatment in primary care, versus 17% saying it comes from rheumatologists.
Ultimately, de Meulemeester said, it's an issue of expectations and education: "Many patients believe gout is their fault due to their own lifestyle, and don't expect to have better outcomes than they are receiving," he told MedPage Today.
"It seems that their doctors are not aware of the pain and impact of gout on their patients' quality of life as patients are not telling them about it," he suggested. "Nevertheless, most of the patients feel their current treatment is the best they can get. There is a clear need to educate patients and their doctors about adequate management of gout."
He said he has three wishes going forward:
- Let physicians become aware of the seriousness of gout. He illustrated that gout affected the ability to walk in 59% of respondents; interrupted sleep patterns in 46%; affected the ability to perform activities of daily living in 43%; affected sex lives in 30%; and made 10% of patients unemployed, through dismissal or retirement.
- Develop evidence to show that gout is as serious as hypertension, diabetes, and other chronic illnesses.
- Help primary care physicians link gout patients to other specialists such as cardiologists to provide holistic treatment.
"It is very disappointing to see that, despite effective treatments, gout is being sub-optimally managed, and patients are suffering as a result," commented press conference moderator John Isaacs, MBBS, PhD, of Newcastle upon Tyne Hospitals in England and chairperson of the EULAR Abstract Selection Committee.
"Gout tends to fall into a no-man's land for treatment. We as rheumatologists tend to want to have the general practitioner handle it while the general practitioner would like to see more involvement with rheumatologists," Isaacs said. "There is a lot of education that is needed."
"There is work to do," de Meulemeester agreed, " but it can be done."
Isaacs disclosed relevant relationships with Pfizer, Abbvie, Roche, Galvani, Merck, Gilead, Eli Lilly, Amgen, Janssen, Celltrion, and the NAPP.
De Meulemeester disclosed relevant relationships with Grünenthal, Novartis, and AstraZeneca.
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