Natural course of restless legs syndrome/Willis-Ekbom disease: long-term observation of a large clinical cohort

Objective: Although restless legs syndrome (RLS)/Willis-Ekbom disease (WED) is a common neurological disorder, data on the long-term course and management of the disease are scarce. The aim of the current study was to extend the knowledge on the long-term clinical course and treatment outcome of RLS/WED.

Methods: In this retrospective analysis, we performed a chart review of consecutive visits of 160 patients with definite RLS/WED from the RLS/WED database of the Innsbruck Medical University.

Results: A total of 160 patients (58.8% female, aged 58.9 years, range 21.5-86.8 years) met inclusion criteria of two or more visits during a follow-up of at least five years. The duration of the observational period was 8.1 ± 2.9 years. During the observational period, the percentage of treated patients increased (first vs last visit: 67.5% vs 77.5%). Of the patients, 59.4% had one or more switches of medication. Overall the RLS/WED severity, evaluated using a combined severity score (CSS) ranging from 1 to 5, decreased between the first and last visits (median [range], first visit: 3 [1-5] vs last visit 2.5 [1-5]; p <0.001). Symptoms improved in 55.0% of patients, worsened in 10.6%, and remained unchanged in 34.4% during the observational period. Augmentation of RLS/WED occurred in 42 patients (13/42 as the presenting cause; 29/42 occurring during treatment after 4.1 years). The annual rate of augmentation for subjects on dopaminergic medication was 8.1%.

Conclusions: Our data suggest that, with the possibility of regular treatment adjustments, RLS/WED remains treatable in the majority of patients over years. Nevertheless, in this study, despite the overall decreased severity, RLS symptoms remained unchanged or worsened in 45% of the patients during the observational period.