Restless Legs Syndrome “Patient Odyssey” survey of disease burden on patient and spouses/partners

Background: Restless Legs Syndrome has been shown to impact quality of life using standardized scales, typically from tertiary referral centers. Little data exist that have evaluated specific life adaptation required by patients with RLS, and no survey has ever looked at the impact of RLS on family members. Methods: The “Patient Odyssey” survey was commissioned by the Restless Legs Syndrome Foundation and designed to assess the day-to-day impact of RLS on patients and their spouses/partners. Results: Surveys were completed by 1622 adult patients (70% female), and 676 adult spouses/partners (65% men and 35% women), either online or by mail. RLS markedly impacted patient sleep as well as mitigated travel, work, and mood. Partners also reported impact on their sleep, leisure time, and their relationship with the patient with RLS. Conclusion: Despite treatment, RLS continues to impact both subjects and their partners. Impact on the partner/family should also be considered in clinical decision-making.