RLS/WED Survey of Patients’ Spouses and Partners Reveals Their Concern of Disease-Related Burdens
-- WED Foundation and XenoPort Announce New Results from the “Patient Odyssey” Survey --
ROCHESTER, Minn. & SANTA CLARA, Calif.--(BUSINESS WIRE)--The Willis-Ekbom Disease (WED) Foundation and XenoPort, Inc. (Nasdaq:XNPT) announced today the second phase of results from the “Patient Odyssey” survey, which reveals how Restless Legs Syndrome/Willis-Ekbom Disease (RLS/WED) may affect the lifestyles and emotional health of patients and their spouses/partners. The survey findings add another important layer of information to the current body of knowledge on RLS/WED. Moreover, the results from the survey showed that spouses/partners understand the impact of RLS/WED, as they are affected by the disease as well. The full survey results are available on the WED Foundation website (www.Willis-Ekbom.org).
“It is my hope that we as clinicians can utilize the survey findings to help increase awareness that this condition not only impacts the RLS/WED patient, but also the spouse and perhaps the entire family.”
“The burden of RLS/WED on patients has been widely reported, but this is one of the few surveys to explore how a spouse/partner is impacted by their loved one’s condition. 90% of couples responding to the survey have been in a committed relationship for more than 15 years, despite the many troubling disruptions to their lives, including sleep disturbances due to RLS/WED symptoms, adjustments to travel and inability to participate in social events,” said Karla Dzienkowski, executive director of the WED Foundation. “On the other hand, the survey also reveals that almost half of RLS/WED sufferers wish their family and friends were more supportive and understanding of their condition, underscoring the importance of addressing the disease as a family unit and with a long-term management plan in mind.”
Participants of the survey included more than 1,600 RLS/WED patients who are members of the WED Foundation. More than 670 adult spouses/partners also responded. The survey was fielded from October 7 to November 8, 2013. The results of the survey included:
- Almost three-quarters (74%) of spouses/partners reported that they are aware on a daily basis of their loved one’s RLS/WED symptoms
- Both patients and spouses/partners reported sleep disturbance as the area of life most affected by RLS/WED
- Almost half (47%) of patients and about one-third (34%) of spouses/partners reported avoiding the movies, theater or concerts as a result of RLS/WED
- One in four of spouses/partners indicated their ability to travel is negatively impacted by their loved one’s RLS/WED
- About one-third (34%) of patients and spouses/partners (36%) admitted sleeping in a separate bed due to sleep disturbances related to RLS/WED
- Approximately nine out of ten (92%) spouses/partners reported that their loved one was taking medication for their RLS/WED and half believed that they should be involved in their loved one’s decision regarding medication (46%)
- Half of spouses/partners (50%) have previously encouraged their loved one to ask their doctor for a different medication
- Almost half of patients (45%) wished their family and friends were more supportive and understanding and almost nine out of ten patients (85%) reported they “agree” that there is a tendency to trivialize RLS/WED in society and the media
“These results indicate that RLS/WED has the potential to impact not only the patient but also their spouse/partner,” said William G. Ondo, M.D., professor of neurology at the University of Texas- Houston and member of the WED Foundation’s Medical Advisory Board. “It is my hope that we as clinicians can utilize the survey findings to help increase awareness that this condition not only impacts the RLS/WED patient, but also the spouse and perhaps the entire family.”
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 and early November.
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 may result in sleep disturbances.
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.