Restless Legs Syndrome Foundation Blog

Survey will help to guide treatment for malady that disrupts well-being for millions

The Restless Legs Syndrome (RLS) Foundation today, international RLS Awareness Day, has launched a research study on the challenges of living with RLS.

Through RLS patient and spouse/partner surveys, the RLS Patient Odyssey Survey II will evaluate treatment strategies, emotional well-being, relationships and lifestyle of people living with RLS, adding to the body of knowledge about the burden of disease and identifying focus areas for future education and research.

The RLS Patient Odyssey Survey II is the second survey developed by the RLS Foundation. More than 2,200 people participated in the first survey in 2013. Findings from the initial survey were published in the journal Sleep Medicine and disseminated broadly.

The current survey will gather updated and expanded data, and is particularly focused on the RLS patient experience with regard to treatments and medical care. People with RLS and their spouses/partners are encouraged to visit www.rls.org/odyssey to participate from Sept. 23 to Oct. 23.

Specifically, the study aims to:

• Understand the experiences of RLS patients with medical treatment and symptom management
• Provide data to researchers on the long-term burden of disease, including impact on spouses and partners
• Promote awareness that RLS is a serious neurological disorder
• Provide resources for RLS patients to facilitate decision-making with their healthcare providers

“RLS is a serious disease that can have a devastating impact on quality of life,” says Karla Dzienkowski, executive director of the RLS Foundation. “We have come a long way to advance treatments and research, but today's treatments are limited, and there is no cure. RLS patients still face significant daily challenges in managing the disease. This study will provide data to accelerate and focus our efforts to address these challenges and improve quality of life for RLS patients and their families.”

An estimated 12 million men, women and children in the US have RLS, and one in 33 adults (3%) needs daily medical treatment to manage symptoms. People with RLS experience an agitating and overwhelming urge to move their legs that can only be relieved by moving. RLS is at its strongest at night and severely disrupts sleep, robbing people of the ability to work and live normally while simultaneously raising the risk for hypertension, diabetes, heart disease and Alzheimer’s disease.

Results will be shared with the RLS community and the public in 2021, prepared for publication in the medical literature and presented at scientific meetings. Findings will also be shared with health policymakers in the RLS Foundation's legislative agenda and advocacy materials.

The RLS Patient Odyssey Survey II was designed by members of the RLS Foundation’s Scientific and Medical Advisory Board, Board of Directors, and staff. The survey is made possible by an educational grant from Arbor Pharmaceuticals.

Getting Healthcare during a Pandemic

The COVID-19 pandemic is changing the way we live in so many ways, including how healthcare services are being accessed: over the internet. If you’re sheltering at home to help stop the spread of coronavirus, but need to see a doctor, telemedicine—receiving medical care via digital technology—is a promising alternative to an in-person appointment.

According to a recent survey conducted by the Harris Poll for the telemedicine provider, Updox, 42% of people surveyed have used telemedicine (also called telehealth) since the start of the pandemic. 65% of survey participants said it is more convenient than in-office appointments, and 63% noted appreciation for not having to worry about being exposed to other potentially ill patients. Other benefits mentioned in the survey included how much easier they thought it was to schedule an appointment via telehealth compared to an in-office appointment (44%), and that follow-ups/communications were more streamlined (38%).

“Technically, there are three types of telemedicine: synchronous, asynchronous and remote monitoring,” explained Jeffrey S. Durmer, MD, PhD, Chief Medical Officer at NOX Health and RLS Foundation Board Member. “Synchronous refers to care that is provided with a live patient typically through a secure video link. Asynchronous, also known as ‘store and forward,’ refers to the act of collecting medical information, including examination data, imaging, laboratory results, etc., and then storing those items for reference later by a physician. Remote monitoring includes collecting behavioral and medical data using cloud enabled devices, software programs, and treatment hardware that can transmit data to remote providers. Remote monitoring can be either synchronous or asynchronous by nature of the patient being present or not, but usually it is asynchronous.” Tele-based programs on health education, behavioral modification, and psychological and social support also fit under the umbrella of telehealth.

Telemedicine for RLS

Dr. Durmer, whose research focuses on the neuroscience of sleep, says telemedicine is a great way for people with RLS to stay connected with providers, especially for sleep-related disorders since there are few sleep clinicians and centers located in the US.

“Telemedicine allows increased access to sleep care and improved management of sleep conditions by specialists. So, common issues like sleep disordered breathing, insomnia, restless legs syndrome, and circadian rhythm disorders are a natural fit for sleep telehealthcare,” he said, adding that more complex disorders may not be suited to telemedicine. “The use of telemedicine in sleep healthcare can augment much of our current face-to-face follow up using remote monitoring and synchronous tele-follow-up appointments.”

Prescriptions for medications usually can be obtained during a telehealth visit as well. Due to the coronavirus pandemic, the Drug Enforcement Agency is now allowing doctors to prescribe controlled substances and schedule II narcotics, such as opioids, during telehealth sessions as long as the medication is being issued for a legitimate medical condition in the clinician’s practice; the clinician follows all state and federal laws; and the telemedicine visit is synchronous, allowing for real-time, two-way communication.

“Outside of the current emergency decree, physicians are generally able to prescribe controlled substances by telemedicine if they have first had a face-to-face encounter with the patient prior to the telemedicine encounter,” said Durmer.

The future of telemedicine

Until now, telemedicine had some important caveats to consider. Stringent coverage rules, geographical issues, in which laws limit the practice of medicine across state lines, and other factors have created significant limitations for patient and providers. However, the coronavirus pandemic has pressured lawmakers to make some substantial changes. Now, the effort among many is to keep those previous barriers in the past permanently.

“Medical insurance plans have resisted the implementation of telemedicine, and prior to COVID-19, placed undue financial and operational burdens on clinicians and their patients in order to utilize telemedicine,” said Durmer. “Some states enacted ‘parity laws’ making it illegal for payers to pay less for telemedicine care than in-person medical care. Insurance companies have found ways around these laws by requiring physicians who want to get paid for telemedicine care to join insurance telemedicine networks. ese insurance-controlled networks often impose operational hurdles such as specifying the use of one electronic medical system, applying for approval to the insurance company telemedicine network and other obstacles that make it difficult for many physicians to even get started.” Medicaid and Medicare also put restrictions on telemedicine reimbursement, making it harder for recipients to engage, although after COVID-19, the government did issue a waiver that now enables greater participation.

“It took a devastating event—the COVID-19 pandemic—to rally the public and local legislators in an effort to extend the use of telemedicine as an equal and often better delivery model for US healthcare,” concluded Durmer. “Many organizations associated with healthcare policy are lobbying state and federal officials to maintain the current emergency telemedicine care guidelines beyond the COVID-19 pandemic, since it is clear that this methodology optimizes care delivery while maintaining a high standard of practice. An additional benefit of moving more care to the telemedicine environment is that by providing clear technology standards for this sort of practice, the ability to objectively measure patient care pathways, medical decisions, and patient outcomes become much more efficient and effective.”

September 23 is RLS Awareness Day!

This year we are celebrating RLS Awareness month by focusing on our advocacy program throughout September. We need your help to make sure everyone in Congress is #RLSAware. We’ve pulled together some ideas on how you can get involved to raise RLS awareness during September.

Here are the simple steps you'll take to get in touch with your representatives:

To find and contact your U.S. Senate Representative:

1. Visit the Senate website www.senate.gov
2. Conduct a search using the Find Your Senators pull-down menu in the upper right corner (select your state and click Go).
3. On the results page is a link to the Senator’s website, contact information, and links to an online contact form (forms vary by Senator).
4. To email: copy and paste your email script into the contact form found on their website, make edits and submit.
5. To call: choose an office location and follow the call script here.

To find and contact your U.S. House Representative:

1. Visit the House of Representatives website www.house.gov
2. Conduct a search using the Find Your Representative zip code search box in the upper right corner (enter your zip code and click Go).
3. On the results page is a photo of your Representative(s), links to the Representative’s personal website and online contact form, and a local map.
4. In the event your zip code overlaps with multiple congressional districts, the results page will include boxes for you to enter your zip code+4 or mailing address to find the correct Representative. If you need help finding your +4 zip code use the USPS Zip Code Lookup.
5. To email: copy and paste your email script into the contact form found on their website, make edits and submit.
6. To call: Look up Health Legislative Assistant (HLA) on partial list here and follow the call script here. If your HLA is not listed, call the office and ask to speak to the Health LA.

Keep an eye out for Foundation news and activities on our social media channels during September! And, after you contact your representatives please let us know here: https://www.surveymonkey.com/r/RLSAWARE