The Willis-Ekbom Disease (WED) Foundation and XenoPort, Inc. (Nasdaq: XNPT) announced today the preliminary results from the “Patient Odyssey” survey, which reveal the challenges experienced by patients with Restless Legs Syndrome/Willis-Ekbom Disease (RLS/WED). The survey kicked off during this year’s National RLS/WED Awareness Week, and examined treatment, lifestyle and emotional burden on both RLS/WED patients and their spouses/partners. Results regarding treatment burden are now available on the WED Foundation website (www.Willis-Ekbom.org); results regarding lifestyle and emotional burden, including spouse/partner responses, will be released in 2014.
“The Patient Odyssey survey results mirror what I and many of my colleagues are already seeing in our practices – that patients can struggle for many years to identify the cause of their symptoms and to arrive at an appropriate disease management plan”
“This initiative has provided important insights regarding management of RLS/WED, including the fact that patients continue to struggle with identifying treatments that adequately control their symptoms in the long term,” said Georgianna Bell, executive director of the Willis-Ekbom Disease Foundation. “Most RLS/WED patients have the disease for life, so understanding how to navigate disease management considerations in partnership with loved ones and physicians is important. The results of this survey will allow us to develop new resources to facilitate improved outcomes for patients, as well as serve as an important educational tool that helps the greater public understand the serious burden of this disease.”
Participants of the survey included 1,709 RLS/WED patients who are members of the WED Foundation and consisted of 1,194 women and 515 men. The results of the survey showed:
- Almost three in four (73%) of patients reported that they experience symptoms daily
- When asked about their current medication, only 6% of patients believed that their RLS/WED symptoms are completely controlled by their current medication(s)
- Sixty-eight percent of patients said they “strongly agreed” that there is a need for greater physician knowledge and understanding of RLS/WED
- Forty-two percent of patients “agreed” that their healthcare provider does not understand their disease
- Ninety-three percent of patients “agreed” that they wished more effective medications were available to treat RLS/WED
“The Patient Odyssey survey results mirror what I and many of my colleagues are already seeing in our practices – that patients can struggle for many years to identify the cause of their symptoms and to arrive at an appropriate disease management plan,” said Dr. Philip Becker, President, Sleep Medicine Associates of Texas and longtime member of the Medical Advisory Board of the WED Foundation. “This initiative reinforces the need to continue to educate the RLS/WED community and the physicians who treat them. Those with RLS/WED deserve knowledgeable physicians who understand the disease. A proper diagnosis and sustained treatment of RLS/WED can offer benefit to those who suffer through restless days and restless nights.”
The survey was conducted by the WED Foundation and made possible through a corporate sponsorship from XenoPort, Inc. It was distributed to members of the WED Foundation and their spouses/partners via mail and was available online throughout the month of October.
About Restless Legs Syndrome/Willis-Ekbom Disease
RLS/WED affects people of all ages, genders and races. People who have the disease have to move their legs or arms to relieve uncomfortable, sometimes painful sensations. These sensations tend to get worse when the person is at rest, like when sitting or lying down, watching television or taking a long car ride. Because symptoms usually intensify in the evening, they often interfere with the ability to sleep..
While the causes of RLS/WED are not completely understood, several genes have been identified with an increased risk of RLS/WED. Other factors thought to contribute to the disease include iron metabolism and, possibly, abnormalities in the neurotransmitters dopamine and glutamate.
While there is not yet a cure for RLS/WED, treatment is available.
About the WED Foundation
The WED Foundation is dedicated to improving the lives of men, women and children who live with Willis-Ekbom disease. Founded in 1992 as the Restless Legs Syndrome Foundation, the organization’s goals are to increase awareness, improve treatments, and through research, find a cure. The WED Foundation serves healthcare providers, researchers, over 4,000 members, and millions of individuals in the United States and Canada. The WED Foundation has awarded $1.4 million to fund medical research on RLS/WED causes and treatments. For more information, please visit http://www.Willis-Ekbom.org.
XenoPort, Inc. is a biopharmaceutical company focused on developing and commercializing a portfolio of internally discovered product candidates for the potential treatment of neurological disorders.