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RLS/WED Survey Of Patients’ Spouses And Partners Reveals Their Concern Of Disease-Related Burdens

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).

“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.”

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