A new survey of doctors and fibromyalgia patients reveals the condition severely impacts quality of life and poses a substantial economic burden, a situation which is made worse by a lack of knowledge and understanding on the part of doctors.
The Fibromyalgia Global Impact Survey was developed by the European Network of Fibromyalgia Associations (ENFA), a coalition of patient advocacy organisations, and pharmaceutical firm Pfizer, with the aim of increasing understanding of fibromyalgia and improving diagnosis. The survey involved interviews with a total of 800 fibromyalgia patients and 1,622 doctors from eight countries: the UK, France, Germany, Italy, Spain, the Netherlands, Mexico and South Korea.
The patients involved in the study all had an established diagnosis of fibromyalgia. Diagnosis of this chronic pain and fatigue disorder is based primarily on patient reported symptoms and the ruling out of other conditions. To be diagnosed with fibromyalgia a patient typically must have experienced chronic widespread pain for at least 3 months and exhibit at least 11 tender points; specific areas on the body which are extremely sensitive to the touch on physical examination.
A number of other symptoms are also common in fibromyalgia and may aid in diagnosis. These include sleep disturbances, skin that is sensitive to touch, fatigue, stiffness, cognitive dysfunction (e.g. poor concentration and memory), mood disturbances, and gastrointestinal symptoms.
A major finding of the survey was that patients' suffering may be increased by the time it takes for them to be diagnosed. In most countries it was found that it takes patients an average of 1.9 to 2.7 years to be diagnosed with fibromyalgia. In addition, they see between 2 and 4 different doctors before an accurate diagnosis is made. Information provided by the doctors involved in the survey reveal that a lack of confidence in recognizing the symptoms of fibromyalgia may be contributing to delays in diagnosis.
Perhaps more surprising is the fact that patients waited an average of 5-18 months to consult a physician about their symptoms believing they would go away or they could manage them on their own. A lack of public awareness of fibromyalgia and its symptoms may therefore also be a major contributor to the long periods of time for patients to be diagnosed.
Fibromyalgia patients In all countries surveyed say they experience an average of 6 to 11 symptoms, including chronic widespread pain, sleep disturbance, fatigue and sensitivity to touch. They described many of these as extremely or very disruptive to the overall quality of their lives. Fibromyalgia has the biggest impact on physical mobility, overall mood, concentration and memory, and motivation and drive according to patients.
The severity of symptoms and disability experienced leads to missed work days and across all European countries surveyed. In most countries around half of all patients said they had missed more than 10 days of work in the past year. Furthermore, at least 1 in 5 patients said they have had to quit their jobs and were unable to earn an income. In Spain, a third of patients said they had lost their jobs due to fibromyalgia. This obviously creates severe financial difficulties for patients and also has an economic impact on health services and a country's economy as a whole.
"These survey findings are so important because they expose the challenges facing people living with fibromyalgia and validate the tremendous impact of the condition on their lives," says Robert Boelhouwer, President of the European Network of Fibromyalgia Associations (ENFA). "It is my hope that these new data will prompt a dialogue about steps that can be taken to improve diagnosis and management of fibromyalgia so we can reduce the enormous burden of this chronic pain condition."
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