RLS/WED Survey of Patients’ Spouses and Partners Reveals Their Concern of Disease-Related Burdens
14 February 2014 - 12:30AM
Business Wire
-- WED Foundation and XenoPort Announce New
Results from the “Patient Odyssey” Survey --
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.”
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.
About XenoPort
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.
WED FoundationKarla Dzienkowski,
507-287-6465Dzienkowski@willis-ekbom.orgorXenoPort, Inc.Jackie
Cossmon, 408-616-7220ir@XenoPort.com
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