Restless Legs Syndrome Foundation Blog

RLS Training for Doctors Would Be Cost Effective, Study Shows

An excerpt from the spring 2017 edition of NightWalkers, the Foundation's quarterly magazine

Recent research findings make the case for investment in a longterm infrastructure to train primary care providers in the United States to recognize and treat RLS. Currently, doctors do not receive such training in medical schools.

In 2016, the RLS Foundation awarded a research grant to William Padula, PhD, of Johns Hopkins Bloomberg School of Public Health, to conduct an economic study on the value of accurately diagnosing and treating RLS. Padula, in collaboration with Christopher J. Earley, MD, MB, BCh, PhD, FRCPI, at Johns Hopkins Medicine; and Charles E. Phelps, PhD, MBA, at the University of Rochester; concluded that training primary care providers to correctly diagnose RLS would be cost effective. They found that in 65 percent of cases, the cost of training is expected to be lower than costs related to patients’ medical care, as well as lost work and time.

Padula and Phelps will co-present their findings at the annual meeting of the International Society of Pharmacoeconomics and Outcomes Research (ISPOR) in May, and are preparing the results for publication in a medical journal.

“We hope that in addition to publishing these findings, headway can be made to incorporate training on RLS treatment into standard postgraduate medical curriculum for many of the primary and secondary medical disciplines,” says Padula. “This scientific evidence on value is sure to help.”

The study sheds light on a vexing problem: Since RLS is not covered in the medical school curriculum, patients who have RLS are commonly misdiagnosed by inexperienced or undertrained providers as having other chronic conditions with similar symptoms, such as Parkinson’s disease (PD), attention deficit hyperactivity disorder (ADHD) or sleep deprivation. Some evidence shows that the misdiagnosis and subsequent treatment for the wrong condition leads to worsening patient outcomes and high accumulated costs of care.

For example, a patient who is misdiagnosed with ADHD may take medications that actually worsen RLS symptoms, and subsequently be misdiagnosed with PD. The period of misdiagnosis commonly persists for years, taking a significant toll on sleep and quality of life.

The researchers collaborated on the design of a cost-effectiveness analysis to model scenarios of costly misdiagnoses leading to poor patient outcomes, as opposed to properly treating RLS. They applied their model using information from a comprehensive review of medical literature.

Padula’s economic analysis on the costs of RLS is the first of its kind in the United States and will support the Foundation’s efforts to expand provider education.

“Understanding the underlying factors – such as lack of provider education – that delay access to treatment and addressing them will ultimately improve patient outcomes,” says Karla Dzienkowski, RN, BSN, executive director of the RLS Foundation.

She adds, “Dr. Padula’s study underscores the economic impact of RLS and burden of disease for individuals living with RLS. It is our hope that this research provides RLS researchers valuable information to secure future funding from the National Institutes of Health, Department of Defense, and other sources.”

Want to subscribe to NightWalkers? Become a member today to receive this quarterly member publication, along with other member benefits!

Our RLS Healthcare Provider Directory

It is often difficult for those of us with RLS to find a physician that fully understands this often misunderstood disease and the various treatment options that are available. Thus, to better serve our members, the Foundation maintains a directory of healthcare providers who have expressed interest and knowledge in the treatment of restless legs syndrome. This directory includes doctors in the U.S. and Canada, and patients can search by city or state/province to find a healthcare provider nearby.

"We get frequent requests from members for physicians knowledgeable in the treatment of RLS," Membership Coordinator Faith Duncan said. "We do our best to provide referrals and if necessary, elevate the level of expertise to one of our Quality Care Centers. We rely on our many constituents to provide feedback to us regarding our listed healthcare providers, as well as their recommendations for physicians we might be able to add to our online directory."

The Foundation also offers a network of certified RLS Quality Care Centers in the U.S. and Europe. Centers are staffed by leading RLS specialists who provide expert care and specialized disease management. To learn more about QCCs and their certification requirements, click here.

"The RLS Quality Care Center and Healthcare Provider Directories are excellent resources for individuals in the RLS patient community in search of a physician," Executive Director Karla Dzienkowski said. "As we know, finding a doctor who can identify and manage RLS removes a barrier to treatment, and will ultimately improve symptom management."

We are always looking to grow our Healthcare Provider Directory. If you are satisfied with your current RLS doctor, please ask them to complete the HCP Referral Form so others seeking help with their RLS can get help.

User Responsibilities: Any decision to visit a healthcare provider from this directory is the sole responsibility of the user. These healthcare providers have expressed an interest in treating RLS. Each person is encouraged to make his/her own investigation prior to consulting for treatment. By using this directory you are assuming full responsibility for using this information and understand and agree that the RLS Foundation is neither responsible nor liable for any claim, loss, or damage from its use.

RLS Foundation Disclaimer: Information provided in this directory is a courtesy of the Restless Legs Syndrome Foundation. While we try to keep this information as accurate as possible, we disclaim any representation about its accuracy, completeness, or appropriateness for a particular purpose.

The RLS Foundation makes no representations concerning the quality of medical care or level of professional skills of any specific healthcare provider. In addition, the listing of these persons does not constitute or imply a recommendation or endorsement by the RLS Foundation.