The RLS Patient Odyssey Survey II (ODYSSEY II) study shows that people with RLS have substantially higher risks of depression and suicidal thoughts than those with other chronic health conditions, and extensive delays in diagnosis and treatment. These findings underscore the urgent need for clinician education, universal screening in primary care, and research to find better treatments and a cure.
Background
In 2020, supported by an educational grant from Azurity Pharmaceuticals, the RLS Foundation conducted ODYSSEY II to evaluate the challenges of people living with RLS. The study was comprised of a patient survey and a spouse/partner survey, with questions about RLS diagnosis and severity, associated medical conditions, RLS treatment responses, and opinions of RLS care. In all, 3,003 patients and 432 spouses/partners participated.
Primarily living in the US, the group was 70% female and had an average age of 66. Many were highly educated; 76% had graduated from college; 38% also had completed graduate or professional school. In the patient group, 2,745 were confirmed as having RLS. Just over half had severe RLS, indicating high RLS severity is modestly overrepresented in this study compared with national norms.
Read the full report here, following is an Executive Summary.
Key findings: Patients
RLS is more common and severe than many other chronic health conditions. Depression and suicidal thoughts are major consequences of RLS, in addition to the widely recognized issues of sleep loss and its effects on daily life. Among the respondents, 37% had depression that was moderate or worse — a rate four times that of the general US adult population.
People with RLS experience excessive delays in diagnosis and treatment. The average time from first symptoms to bothersome symptoms was 8.8 years, and from bothersome symptoms to seeking treatment was 9.8 years. From there, the average time to diagnosis was 2.1 years.
RLS treatment options and medical care are inadequate. Two-thirds of respondents said their current medications worked “somewhat well” or “very well.” The highest success rates were for alpha-2-delta ligands and the opioid methadone.
Key findings: Spouses/partners
RLS adversely affects spouses and partners. Partners’ lives were impacted in areas including sleep (38%), social events (29%), travel (27%), relationships with their partners (25%), mood and happiness (23%), and sex (20%).
Recommendations
- Conduct an ODYSSEY III survey that directly measures HRQoL in RLS patients and their partners. ODYSSEY II highlights issues where further knowledge is needed. Direct HRQoL data will strengthen advocacy for research, education and systemic improvements in RLS care.
- Institute universal screening for RLS in primary care practices to shorten the diagnostic timeline. Strategies might include protocol revision, alerts in electronic health records, a short-form RLS screening test, and adding RLS screening to U.S. Preventive Services Task Force recommendations.
- Conduct implementation and dissemination research to identify methods to increase the use of RLS diagnosis and treatment protocols by providers — for example, by automating proper protocol use for screening, diagnosis, treatment and referral to RLS Quality Care Centers.
- Incorporate RLS education into clinician training to reinforce treatment guidelines, such as the use of alpha-2-delta ligands as a first-line therapy. Dopamine agonists are no longer recommended as a first-line therapy due to risk of augmentation. Guidelines also outline appropriate use of opioids in low total daily doses to treat refractory RLS.
- Increase and expand RLS research. Basic science and clinical studies are urgently needed to understand the causes and clinical pathways of RLS and to develop more effective treatments. Epidemiological research is needed to explore the role of genetics in treatment response.