Lifestyle, Emotional and Relationship Impact of RLS/WED

Lifestyle, Emotional and Relationship Impact of RLS/WED From the Perspective of the Patient and the Partner/Spouse Results from the “Pa...

Lifestyle, Emotional and Relationship Impact of RLS/WED
From the Perspective of the Patient and the Partner/Spouse
Results from the “Patient Odyssey” Survey

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.

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.

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.

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