Awareness
Press Release
Lifestyle, Emotional and Relationship Impact of RLS/WED
Thursday, February 13, 2014
Lifestyle, Emotional and Relationship Impact
of RLS/WED
From
the Perspective of the Patient and the Partner/Spouse
Results from the “Patient Odyssey” Survey
OVERVIEW
The “Patient Odyssey” survey, conducted by the Willis-Ekbom Disease
(WED) Foundation and sponsored by XenoPort, Inc., provides important new
insights regarding Restless Legs Syndrome/Willis-Ekbom Disease (RLS/WED). The
survey was designed to measure how RLS/WED impacts daily living, both from the
perspective of patients as well as spouses/partners, including treatment
considerations, emotional well-being, relationships and lifestyle. By assessing
the findings, WED Foundation will be able to develop new tools to support
patients, partners/spouses and physicians as they work together to achieve
long-term disease management; the Foundation will also utilize the survey
findings to help create greater understanding of RLS/WED among the general
public.
ABOUT THE SURVEY
The survey was sent to more than 3,000 members of the WED Foundation;
members also received companion surveys to provide to their spouses/partners.
More than 1600 adult patients (70% women; 30% men) and more than 670 adult
spouses/partners (65% men; 35% women) responded to the survey, either online or
by mail. The survey was fielded from October 7-November 8, 2013.
KEY SURVEY FINDINGS
The following survey findings pertain specifically to lifestyle,
emotional and relationship burden, from the perspective of both the patient and
the spouse/partner. Findings related to treatment experience, including symptom
control and medication switching, are available separately on the WED Foundation
website.
Couple Profile
·
Ninety percent (90%) of spouses/partner respondents
have been in a committed relationship for more than 15 years.
·
Eighty percent (80%) of spouses/partners learned
about their loved one’s RLS/WED after getting married/entering into a civil
union.
·
Almost half (46%) of spouses/partners believe
that they should be involved in their loved one’s decision regarding medication
and half (50%) have previously encouraged their loved one to ask their doctor
for a different medication.
·
Fifty percent (50%) of spouses reported being “extremely”
aware of their loved one’s RLS/WED symptoms on a daily basis.
·
Although one-fifth (20%) of spouses/partners
claim RLS/WED has negatively impacted their relationships, almost all (99%)
reported that RLS/WED has never made them consider ending the relationship.
Impact on
Sleep and Relationships
·
Both patients and spouses/partners report a
restful night’s sleep as the area most affected by RLS/WED (85% and 38%,
respectively).
·
Sixty-five percent (65%) of patients and almost
one-quarter (24%) of spouses/partners report RLS/WED symptoms impacting their
sleep three or more days per week.
·
About one-third (34%) of patients and spouses/partners
(36%) admit sleeping in a separate bed due to RLS/WED.
·
As a result of sleep loss, about four in five (81%)
patients and one-third (33%) of spouses/partners report their productivity
being at least somewhat impacted the following day.
·
Nine percent of patients and 12% of spouses/partners
report RLS/WED impacting their intimacy.
Impact on
Social and Leisure Activities
·
Patients and spouses/partners report similar
areas that are impacted by RLS/WED: mood and overall happiness (37% patient,
15% partner), ability to travel (37% patient, 25% partner), ability to
participate in social events (24% patient, 18% partner) and relationships (15%
patient, 20% partner).
·
Almost half (47%) of patients and about
one-third (34%) of spouses/partners report avoiding the movies/theater/concerts
as a result of RLS/WED.
·
Forty-three percent of patients and 36% of
spouses/partners report avoiding long car trips as a result of RLS/WED.
·
About one-third (34%) of patients and about
one-fifth (22%) of spouses/partners report avoiding plane travel as a result of
RLS/WED.
Impact on
Emotional Health
·
Almost half (45%) of patients wish their family
and friends were more supportive and understanding and 86% “agree” that there
is a tendency to trivialize RLS/WED in society and the media.
·
A little more than half (56%) of patients “agree”
that their voice is not being heard.
·
Sixty-seven percent (67%) of patients report
being at least somewhat sad or anxious due their RLS/WED in the past two weeks.
One in 10 (10%) report being very anxious and/or sad.
#
# #
Posts
1 comments