by European Network of Fibromyalgia Associations (ENFA)
June 22, 2008
"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." – ENFA President Robert Boelhouwer
PARIS, June 13 - A new global survey of Fibromyalgia patients and physicians shows that Fibromyalgia, a chronic widespread pain condition, results in poor quality of life and poses a financial burden on patients, often resulting in an inability to work and earn income.
The burden of Fibromyalgia may be further compounded by the fact that in most countries it takes patients on average 1.9 to 2.7 years, and between 2 and 4 physicians to receive an accurate diagnosis.
According to the survey, lack of physician confidence in recognizing symptoms of the condition may be contributing to delays in diagnosis.
These new survey findings were released [June 13] by the European Network of Fibromyalgia Associations (ENFA), a coalition of patient advocacy organizations, and Pfizer Inc, and include findings from the UK, France, Germany, Italy, Spain, the Netherlands, Mexico and S. Korea.
Poor Quality of Life for Patients with Fibromyalgia
In all countries surveyed, patients with Fibromyalgia say they experience 6 to 11 symptoms on average, including chronic widespread pain, sleep disturbance, fatigue and sensitivity to touch.
Many of the symptoms are described by patients as extremely or very disruptive to the overall quality of their lives.
Patients say the areas of their lives that are most affected are physical mobility, overall mood, concentration and memory, and motivation and drive.
Financial Burden of Fibromyalgia
Fibromyalgia places a financial burden on patients and can result in missed work days and limited ability or inability to work.
Across all European countries surveyed, at least 1 in 5 patients said they have been unable to work and earn an income.
Furthermore, one third of patients in Spain, more than in any other country surveyed, claim they lost their jobs due to Fibromyalgia.
In most countries, around half of all patients say they have missed 10 or more days of work over the last year.
Diagnosis Can Take Years
The survey shows that for patients with Fibromyalgia, a diagnosis may take years for a number of reasons.
Patients in this survey waited an average of 5 months (UK) to 1.5 years (Mexico) to consult a physician about their symptoms because they thought their symptoms would go away or they could manage them on their own.
Once patients have consulted a physician, it can take, on average, 1.9 to 2.7 years and between 2 and 4 physicians to receive an accurate diagnosis.
In Spain, this process was even longer (3.7 years).
"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."
Physicians Lack Confidence in Diagnosing Fibromyalgia
Contributing to the lengthy process of diagnosis may be physicians' lack of confidence in diagnosing Fibromyalgia.
Interestingly, this problem was not exclusive to primary care physicians, since specialists surveyed also report significant difficulties diagnosing Fibromyalgia.
In fact, between 16% (Mexico) and 71% (Korea) of all physicians surveyed say they are not very or not at all confident in recognizing symptoms of Fibromyalgia.
Between 25% (Mexico) and 73% (Korea) of physicians also say they are not very or not at all confident in their ability to differentiate symptoms of Fibromyalgia from other conditions.
According to the survey, insufficient training of physicians may contribute to the problem. As a result, it was not surprising to see that a significant proportion of physicians in all countries report the condition is often or almost always misdiagnosed.
"The survey findings are worrying because they suggest that physicians lack knowledge and training in managing patients with Fibromyalgia, which is most certainly contributing to delays in the diagnosis and treatment of the condition," said Ernest Choy MD, Department of Rheumatology, GKT School of Medicine, King's College, London (UK). "It is important that the medical community and policy makers now take the necessary steps to provide physicians with the education and training they need to properly and confidently manage patients with Fibromyalgia."
About Fibromyalgia
Fibromyalgia is one of the most common, chronic widespread pain conditions and affects between 16 and 40 million people worldwide. Fibromyalgia is usually accompanied by poor sleep, stiffness and fatigue along with other co-morbidities. Fibromyalgia is more prevalent in women, who account for 87 percent of diagnosed cases; however, men can also be affected.
The exact causes of Fibromyalgia are not yet known. Some scientists believe that there is an abnormality in how the body responds to pain, particularly a heightened sensitivity to stimuli. A growing body of evidence suggests that alterations in the central nervous system may contribute to the pain of Fibromyalgia.
About the Survey
The European Network of Fibromyalgia Associations (ENFA) and Pfizer Inc. partnered to develop the Fibromyalgia Global Impact Survey to advance understanding and aid diagnosis of Fibromyalgia. The independent polling organization Harris Interactive conducted the survey. The survey was supported by Pfizer Inc.
The survey included 800 diagnosed Fibromyalgia patients and 1,622 physicians total from eight countries: the UK, France, Germany, Italy, Spain, the Netherlands, Mexico and S. Korea.
In each country, 100 diagnosed Fibromyalgia patients, approximately 100 PCPs (primary care physicians) and approximately 100 specialists (25 rheumatologists, 25 neurologists, 25 pain specialists and 25 psychiatrists) were interviewed.
Of the 1,622 physicians surveyed, 1,294 had treated Fibromyalgia patients in the last 2 years and 328 had not. Patients who participated in the survey were 18 years of age or older with the highest percentage of patients (ranging from 30% in Spain and 46% in Mexico) being between 45-59 years of age. Both females (n=675) and males (n=125) were included in the survey. Data collection was conducted from February 25, 2008 through April 17, 2008.
About the European Network of Fibromyalgia Associations (ENFA)
The European Network of Fibromyalgia Associations (ENFA) was formed in September 2004 to increase awareness of Fibromyalgia in Europe and provide support and information to patients and caregivers. There are currently 11 countries part of ENFA, including the UK, Spain, France, Belgium, Netherlands, Germany, Italy, Denmark, Sweden, Portugal and Israel.
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