European Survey Demonstrates Critically Low RLS Awareness
June 2004. The International Restless Legs Syndrome Awareness Coalition
OVERVIEW
The RLS (restless legs syndrome) awareness survey was devised to assess the level of RLS awareness and familiarity of RLS symptoms among the general population in five European countries: France, Great Britain, Germany, Italy and Spain. More than 5,000 adults, aged 15 and older, were surveyed.
RATIONALE
It is estimated that about 10 ¡V 15 percent of the general adult population suffers from RLS. While many patients who experience mild RLS symptoms do not seek medical help, 3 percent of the population experiences moderately to severely distressing RLS symptoms at least two to three times per week and are likely to benefit from treatment. However, only approximately 0.25 percent of the population have been diagnosed with RLS. The vast majority of patients are either undiagnosed or misdiagnosed and have their symptoms wrongly attributed to such conditions as poor circulation or arthritis. It is thought that a lack of awareness about RLS among the general population contributes to the high misdiagnosis rate.
METHODOLOGY
Interviews were conducted by means of CAPI (Computer-Aided Personal Interviewing), in home amongst nationally representative samples.
RESULTS
• Only one in six (17 percent) of the 5,014 adults interviewed claim to have heard of RLS/restless legs syndrome.
• Even in the country with the highest level of knowledge (Great Britain), awareness was lower than 30 percent.
• While most people seem to be aware that the condition is characterised by an unexplainable urge to move the legs, they are not so sure about other symptoms and characteristics of RLS.
• Amongst those who claim to be aware of the condition, there is confusion about the symptoms and definitions of the disorder.
• The most accurately identified symptom of RLS was ‘an unexplainable urge to move the legs, especially when resting’ with the highest number of respondents – 633 (13 percent) – correctly associating it with RLS.
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The International RLS Awareness Coalition
• Officially established in 2004, the International RLS Awareness Coalition is the first global collaboration leading RLS patient groups from 14 countries around the world
(Australien, Danmark, England, Finland, Frankrig, Grækenland, Holland, Italien, Japan, New Zealand, Schweiz, Spanien, Sverige, Tyrkiet, Tyskland, USA og Østrig)
who are committed to raising awareness of RLS, and supporting those who suffer from the potentially debilitating condition.
• Created because of low recognition of RLS symptoms and high frequency of patients who remain undiagnosed, the Coalition addresses the lack of awareness about RLS by educating patients who continue to suffer from RLS unnecessarily and healthcare professionals.
• The Coalition seeks to improve communication about RLS symptoms between patients and physicians in order to help patients obtain an accurate diagnosis of RLS and find effective ways to manage the condition.
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