http://www.ajmc.com/publications/supple ... Salas_S207
It's not new to us, but it's reaffirming and will hoping help get funding and more attention regarding our dilemma.note - This is a 4 page article. I've posted it as four separate posts. Please read them all.
In case the link above stops working, we've attached a downloadable PDF , and here is a copy of the article:
The Real Burden of Restless Legs Syndrome: Clinical and Economic Outcomes
Rachel E. Salas, MD; and Anthony B. Kwan
Restless legs syndrome (RLS) is a highly prevalent and substantially underdiagnosed sensorimotor disorder. Only relatively recently have the large impact on patient quality of life (QoL) and the economic burden associated with RLS become more widely recognized. QoL in patients with RLS has been shown to be worse than that of many other chronic conditions, including type 2 diabetes, clinical depression, and osteoarthritis. Sleep disturbance, a cardinal feature of RLS, is the most common and most destructive of its symptoms. More than two-thirds of RLS patients experience serious insomnia, and waking up several times per night is typical for this patient population. Moreover, RLS disrupts rest during waking hours, such as when the patient is sitting or relaxing. Thus, whether awake or asleep, the RLS patient finds little opportunity for the general restorative behaviors necessary for healthy human functioning, resulting in high rates of comorbidities including depression, anxiety, and hypertension. The direct and indirect costs related to RLS have been evaluated in a few studies. Although the cost studies are associated with certain limitations (eg, use of questionnaires), the results show that costs related to RLS are substantial. Healthcare utilization, primarily in the form of doctor visits, constitutes the largest proportion of direct expenditures for RLS in the United States. Indirect costs are also large, primarily due to productivity losses, which are as high as 20% in RLS patients. Effective treatment of RLS is necessary to limit the negative effects of RLS on QoL and to reduce costs associated with the condition.
(Am J Manag Care. 2012;18:S207-S212)
Restless legs syndrome (RLS) is a highly prevalent sensorimotor disorder with the potential to exert a very substantial negative impact on the quality of life (QoL) of those affected.1,2 The 4 standard diagnostic criteria for RLS are: 1) an urge to move the legs, 2) such an urge, or unpleasant feelings, while in a state of rest or inactivity, 3) relief of the urge and unpleasant feeling through movement, and 4) experience or intensification of the urge/unpleasant feelings during the evening or night hours.3,4
The pathophysiology of RLS is not fully understood; however, dopaminergic dysfunction and brain iron deficiency are thought to play a role. RLS is categorized as either primary or secondary. Primary RLS is idiopathic, with no known cause. Secondary RLS is associated with particular medical conditions, for example iron deficiency or chronic renal failure, or the use of certain medications.5
Reports regarding the epidemiology of RLS provide somewhat variable prevalence estimates based on the particular countries in which prevalence is measured, and how RLS is reported visà-vis the threshold of symptom severity. The REST General Population study, which included interviews with 15,391 adults in the United States (n = 6014), France, Italy, Spain, and the United Kingdom, found that 7.2% of the total study population met all 4 diagnostic criteria with “any frequency” of symptoms, while 5% experienced symptoms at least once per week, and 2.7% were designated RLS “sufferers,” meaning they experienced moderately or severely distressing symptoms at least twice per week. Data from the United States showed that 7.6% experienced the 4 diagnostic symptoms of RLS with any frequency, 5.8% experienced the 4 symptoms once or more per week, and 3.1% were designated RLS sufferers.2
A recent systematic review by Innes et al of RLS epidemiology studies from North America and Western Europe—which included 34 papers comprising over 230,000 participants— found prevalence rates in adults ranging from 4% to 29%.6 The RLS Epidemiology, Symptoms, and Treatment (REST) General Population study found the prevalence of RLS approximately 2 to 3 times more common in women—depending on severity of symptoms—which was roughly consistent with the Innes findings.2,6 Other demographic risk factors for RLS have been identified in epidemiologic studies. A study published in 2012, for example, examined demographic and socioeconomic risk factors for RLS based on the results of 2 population-based cohort studies conducted in Germany. One of the studies included was conducted in Dortmund and included 1312 participants; the other study was conducted in Pomerania and included 4308 participants. The authors found that risk factors for RLS in the Pomeranian study, which had a mean follow-up of 5.2 years, included female gender, being retired, and being unemployed. The study from Dortmund, which had a mean 2.2 year follow-up, observed slightly different risk factors: being retired, not having an education beyond primary school, being unemployed, having a low income, and doing shift work. Both studies also found that increased age and having an overall lower socioeconomic status were both associated with elevated RLS risk.7
Underdiagnosis of RLS is common, with only 41% of those requiring medical treatment actually receiving an RLS diagnosis; less than one-third of those experiencing frequent RLS symptoms receive an appropriate diagnosis.1 In addition to underdiagnosis, misdiagnosis is common. Hening et al noted a high risk for confounding symptoms (“mimics”) in RLS and conducted a study that examined the risk of being misdiagnosed with RLS despite qualifying for a diagnosis based on the 4 standard diagnostic criteria.3 Of the 1232 participants in the Hening study, 126 were found not to have RLS and yet reported experiencing symptoms that were consistent with the 4 diagnostic criteria.3 The authors further identified 6 mimics that sufficiently resembled 1 or more of the 4 diagnostic criteria so as to provoke misdiagnosis. These 6 mimics were: leg cramps, peripheral neuropathy, radiculopathy, arthritic pain, positional discomfort (ie, a particular seated/lying position causing RLS-like symptoms rather than urge/discomfort while being at rest per se), and pronounced or frequent unconscious movement of the feet or legs (eg, foot tapping, hypnic jerks).3
RLS has, in recent years, become the subject of intensifying study as the prevalence of RLS and the seriousness of an RLS diagnosis are becoming better recognized. The purpose of the present article is to examine the clinical and QoL burdens experienced by those who live with RLS symptoms as well as the economic burden borne by managed care organizations (MCOs) and the public at large.
Quality of Life
The burden on patient QoL arising from RLS can be severe, as has been observed in numerous QoL studies. Kushida et al, employing the SF-36 instrument for measuring QoL, found that across all 8 domains addressed by SF-36—including physical functioning, physical role functioning, bodily pain, general health perceptions, vitality, social role functioning, emotional role functioning, and mental health—participants with RLS scored significantly worse than published norms for the general US population. The authors also compared SF-36 scores for RLS with those scores observed in patients with type 2 diabetes, clinical depression, and osteoarthritis, and found that RLS patients had lower scores in nearly every domain, both physical and mental, compared with those other patient populations.8
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