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Movement Disorders Restless Legs Syndrome The Impact of Restless Legs Syndrome/ Willis–Ekbom Disorder on Quality of Life Aadi Kalloo, 1 Charlene E Gamaldo, MD, FAASM, 2 Anthony B Kwan, BA 3 and Rachel E Salas, MD 4 1. BA Candidate, Department of Neuroscience, Johns Hopkins University; 2. Associate Professor, Department of Neurology, Sleep Division, Johns Hopkins University School of Medicine; 3. BA, Department of Neuroscience, Johns Hopkins University; 4. Assistant Professor, Department of Neurology, Sleep Division, Johns Hopkins University School of Medicine, Baltimore, Maryland, US Abstract Restless legs syndrome (RLS), also known as Willis–Ekbom Disorder (WED), is a condition associated with nocturnal sensorimotor symptoms that can result in significant sleep disruption. RLS is a prevalent condition, affecting an estimated 3.9–14.3 % of the US population. Despite the most recently reported prevalence studies, many experts in the field still believe RLS is a generally underdiagnosed condition. RLS can negatively affect a patient’s quality of life (QoL) across several domains, such as daytime sleepiness, decreased general health, decreased immune function, stress, and mood. Of those patients with moderate-to-severe symptoms that require treatment, the currently available therapeutic options (e.g. iron supplements, dopamine agonists, benzodiazepines, opioids, and anticonvulsants) can also come with adverse side effects that can further impact QoL. The purpose of this article is to examine the QoL deficits experienced by RLS patients. Keywords Restless legs syndrome, Willis–Ekbom Disorder, quality of life, sleep, sleep disorder, health-related quality of life, management Disclosure: The authors have no conflicts of interest to declare. Received: August 14, 2013 Accepted: November 18, 2013 Citation: US Neurology, 2014;10(1):15–22 Correspondence: Rachel E Salas, MD, Assistant Professor, Johns Hopkins University School of Medicine, Neurology/Sleep, Meyer/Neuro Sleep Suite 6119, 601 N Wolfe Street, Baltimore, MD 21287, US. E: rsalas3@jhmi.edu Restless legs syndrome (RLS) is a sensorimotor condition that primarily results in sleep disruption and subsequent daytime functional symptoms, particularly for those individuals with moderate-to-severe cases. Recently there has been a shift from using the name ‘Restless Legs Syndrome’ to using ‘Willis–Ekbom Disorder’ (WED), in order to address matters of stigma and title inaccuracy. The accepted clinical diagnostic criteria for RLS (WED) are: 1) an urge to move the legs, usually accompanied by an uncomfortable sensation(s); 2) the uncomfortable sensation(s) begins or worsens during periods of rest; 3) the unpleasant sensations are partially or totally relieved by walking/movement; and 4) the urge to move is greater in the evening or night than during the day. 1 Recently, a fifth criterion has been added: the disorder cannot be accounted for as symptoms primary to another medical or behavioral condition. 2,3 This helps differentiate RLS (WED) from other disorders that mimic the symptoms of RLS (WED). Mimics, such as leg cramps, peripheral neuropathy, radiculopathy, arthritic pain, and positional discomfort, may make the diagnosis of RLS (WED) difficult 3 or may lead to misdiagnosis, causing a negative impact on patient quality of life (QoL). The full pathology of RLS (WED) is not yet entirely understood, but various studies have linked RLS to several neurologic factors, including decreased iron content in the substantia nigra, decreased dopamine neurotransmission in the striatum, © TO U CH MED ICA L MEDIA 2014 and increased glutamate levels in the thalamus. 4–6 RLS symptom severity can fall across the entire clinical spectrum ranging from mild, moderate, severe, to very severe; it is usually determined by frequency and severity of symptoms, in addition to its impact on patient QoL. 7 Understanding QoL has been a topic of growing interest over the past few decades and may influence treatment options and the psychologic well- being for those living with a chronic condition. Although there have been many studies investigating the diagnostic criteria, epidemiology, and costs involved with RLS (WED), less attention has been paid to the cost and toll put upon the RLS patients’ QoL. Modern QoL studies tend to be multidimensional and cover physical, social, emotional, cognitive, and work- and role-related aspects of patients’ lives through the use of questionnaires or interviews. 8 Recent federal policy changes have illustrated the need for measuring QoL to supplement public health’s traditional measures of morbidity and mortality. To this end, Healthy People 2000, 2010 and 2020 identified QoL improvement as a central public health goal. 9,10 To meet the goal of QoL improvement, QoL deficits must first be understood. A study by Abetz et al. used the Short Form 36 (SF-36) Health Survey to assess the following eight domains: physical functioning, role limitations due to physical problems, bodily pain, general health perceptions, vitality, social functioning, role limitations due to emotional problems, and mental health. 11 The authors 15