About one-third (34%) of patients and spouses/partners sleep in separate beds due to restless legs syndrome (RLS), according to a newly released study from The Willis-Ekbom Disease (WED) Foundation. Other findings of the “Patient Odyssey Survey” include the following:
Sleep and Relationship Impact
• Sixty-five percent (65%) of patients and almost one-quarter (24%) of spouses/partners report RLS symptoms impacting their sleep 3 or more days per week.
• 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 impacting their intimacy.
Social and Leisure Activities Impact
• Patients and spouses/partners report similar areas that are impacted by RLS: 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.
• Forty-three percent of patients and 36% of spouses/partners avoid long car trips as a result of RLS.
• About one-third (34%) of patients and about one-fifth (22%) of spouses/partners avoid plane travel due to RLS.
Emotional Health Impact
• 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 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 to their RLS in the past 2 weeks. One in 10 report being very anxious and/or sad.
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 1,600 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 to November 8, 2013. It was sponsored by XenoPort Inc.