Sleep Disorders | Sleep Review
A new survey by the Health Union, which creates condition-specific online patient communities, found that people with Restless Legs Syndrome (RLS) often struggle with confusing patient journeys, from diagnosis to healthcare professional relationships to treatment experience . The Health Union’s Survey of Sleep Disorders in America sheds light on the perspectives and experiences of people with RLS and other types of sleep disorders, including insomnia, narcolepsy, and sleep apnea.
Of those surveyed for Sleep Disorder in America who answered RLS-specific questions and were officially diagnosed with the condition, 40% said they had primary RLS, which means the cause is unknown or not with another condition or disease related to another symptom. Another 19% have secondary RLS caused by another condition, while the other 41% weren’t sure what type of RLS they have.
Diagnosing the condition can sometimes be confusing for several reasons, including not understanding the full extent of the problem. For example, more than a third of diagnosed respondents elapsed at least two years between when symptoms first appeared and meeting a healthcare professional to discuss these symptoms.
Since there is currently no diagnostic test specifically designed for RLS, diagnosis is usually made through an assessment, which primarily involves a review of a person’s medical history and a description of the symptoms. For respondents, a medical or symptomatic history review was the main diagnostic test used for more than half, followed by physical exams (42%), sleep studies (40%), and neurological exams (20%).
[RELATED: Should Sleep Specialists Prescribe Opioids for Restless Legs Syndrome?]
Healthcare Professional Relationships (HCP) can often be a factor in alleviating or exacerbating the RLS confusion, with some types of professionals less familiar with all aspects of the condition. Eight out of ten diagnosed respondents said they regularly see a doctor for their RLS. However, of this group, 54% said a GP was the most important HCP they saw. Almost a quarter said they saw a neurologist most often, while only 8% said a sleep specialist was the primary HCP for their RLS.
While three quarters of diagnosed respondents said they felt comfortable discussing all aspects of their condition with their HCP and 63% were satisfied with the care, there still seems to be confusion. Four in ten respondents feel that their treatment options are not clearly explained, and 45% do not fully agree with their HCP about the severity of their RLS.
“When I was diagnosed, I got medication, but very little support beyond that,” said Lindsey Kizer, patient advocate for Sleep-Disorders.net, in a press release. “I didn’t quite understand how to handle it outside of medication, or how it affects or plays into my other conditions. I have a feeling that even among doctors, the effects are often minimized. “
Treatment can be a difficult hurdle even for people with RLS. Only 29% of diagnosed respondents think their condition is being monitored according to their current treatment plan, and only a quarter are confident that they are doing whatever it takes to manage their RLS on a regular basis. In fact, four in ten said they had at least four sleep disorders each night.
Over-the-counter drugs and alternative therapies like melatonin appear to be the dominant forms of treatment for people with RLS. 53% of the diagnosed respondents say they are currently using them. And nearly four in ten respondents said they would rather make changes to their lifestyle or diet than take a prescription. At the same time, a small proportion – 20% – said they were actively looking for information on the latest RLS-specific treatments, while 43% said they wanted to participate in a clinical trial.
“Restless legs syndrome, like many sleep disorders, can be a confusing condition for both patients and healthcare professionals because there are often limited understanding of the condition and its full effects,” said Tim Armand, Co-Founder and President of Health Union in one publication. “Online health communities like Sleep-Disorders.net are trying to provide people living with this disease with the information they need to reduce confusion and provide support and validation to help them feel less alone in their experiences . “
The America Insomnia Survey, conducted March 3 through July 24, 2020, included responses from 2,198 people with insomnia. The respondents answered different questions depending on the type of sleep disorder. The survey included 434 respondents with restless legs syndrome, 404 respondents with insomnia, 105 respondents with narcolepsy, 968 respondents with sleep apnea, and 287 with another form of sleep disorder.
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