Original article Impact, diagnosis and treatment of restless legs syndrome (RLS) in a primary care population: the REST (RLS epidemiology, symptoms, and treatment) primary care study Wayne Hening a, * , Arthur S. Walters a,b,c , Richard P. Allen d , Jacques Montplaisir e , Andrew Myers f , Luigi Ferini-Strambi g a Department of Neurology, Robert Wood Johnson Medical School, University of Medicine and Dentistry of New Jersey, New Brunswick, NJ, USA b New Jersey Neuroscience Institute, JFK Medical Center, Edison, NJ, USA c Seton Hall University School of Graduate Medical Education, South Orange, NJ, USA d Department of Neurology, Johns Hopkins University, Baltimore, MD, USA e Department of Psychiatry and Neurosciences, Universite ´ de Montre ´al, Montre ´al, Canada f Premark Services, Crawley Down, UK g Department of Neurosciences, Universita ` Vita-Salute, San Raffaele, Milan, Italy Received 2 December 2003; received in revised form 24 March 2004; accepted 26 March 2004 Abstract Objectives: To assess the frequency, impact, and medical response to the restless legs syndrome (RLS) in a large multi-national primary care population. Method: Questionnaire surveys of matched patients and primary care physicians (PCPs) in five modern industrialized western countries. Results: An RLS screening questionnaire was completed by 23,052 patients: 2223 (9.6%) reported weekly RLS symptoms; 1557 of these patients had medical follow-up questionnaires completed both by themselves and by their physician. An RLS sufferer subgroup ðn ¼ 551Þ likely warranting treatment was defined as reporting at least twice weekly symptoms with appreciable negative impact on quality of life. A total of 88.4% of RLS sufferers reported at least one sleep-related symptom. Most reported impaired sleep consistent with a diagnosis of insomnia. Out of 551 sufferers, 357 (64.8%) reported consulting a physician about their RLS symptoms, but only 46 of these 357 (12.9%) reported having been given a diagnosis. PCPs reported that 209 (37.9%) RLS sufferers consulted them about RLS symptoms, but only 52 (24.9%) were given an RLS diagnosis. In most countries, sufferers, regardless of diagnosis, were prescribed therapies not known to be effective in RLS. Conclusions: RLS significantly impairs patients’ lives, often by severely disrupting sleep. The marked under-diagnosis and inappropriate treatment of RLS indicates that PCPs need better education about this condition. Recognizing how often disrupted sleep results from RLS should improve diagnosis. q 2004 Elsevier B.V. All rights reserved. Keywords: Restless legs syndrome; Quality of life; Primary care; Sleep disturbance; Prevalence; Insomnia 1. Introduction Restless legs syndrome (RLS) is a sensorimotor disorder [1] characterized by an urge or need to move the limbs, usually associated with abnormal sensations in the legs. These symptoms are worse at rest, are relieved by movement, and mainly occur in the evening and/or at night [2–4]. RLS was probably first described in the 17th century [5], but modern interest in the condition began with the work of Ekbom in the 1940s [6]. RLS morbidity in patients involves significant sleep disturbance and negative impact on quality of life [7]. The current understanding of the pathophysiology of RLS suggests the involvement of iron metabolism and dopaminergic dysfunction [1,7]. Epidemiological studies indicate that the symptoms of RLS are present in about 5–10% of the general population [8–10]. Despite this high frequency of affected individuals, experience suggests that it is often undiagnosed in those 1389-9457/$ - see front matter q 2004 Elsevier B.V. All rights reserved. doi:10.1016/j.sleep.2004.03.006 Sleep Medicine 5 (2004) 237–246 www.elsevier.com/locate/sleep * Corresponding author. Address: 321 Avenue C (1-F), New York City, NY 10009, USA. Tel.: þ 1-410-550-5137; fax: þ 1-410-550-8078. E-mail address: waheningmd@aol.com (W. Hening).