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Stakeholder involvement in the optimization of a patient-centered exercise intervention for people with restless legs
Katie L J Cederberg1, E Morghen Sikes2, Emmanuel Mignot1
1Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Palo Alto, California.
Study Objectives:
Previous research supports exercise as a behavioral approach to manage symptoms of restless legs syndrome (RLS); however, completion rates in exercise studies are low. This study obtained key stakeholder feedback from people with RLS to modify and optimize a 12-week, evidence-based exercise program for RLS.
Methods:
Participants with RLS (n = 513) completed a nationwide survey to provide feedback on the necessity, interest, feasibility, and efficacy of the program as well as perceived barriers and proposed modifications to improve the exercise program.
Results:
Most respondents (67%) expressed the need for an exercise program designed specifically for people with RLS and 64% were interested in the program. Only 6% of participants thought the program would not be well tolerated and 6% responded that it would likely exacerbate symptoms. However, only 58% said they would be likely to participate in the program if it was available to them locally. Key barriers to participation were (1) accessibility, (2) personal factors, (3) trustworthiness, and (4) fear of injury, illness, or symptom exacerbations. Respondents highlighted modification considerations for the individualization of exercise features, adaptations for specific impairments/personal factors, inclusion of flexibility and balance exercises, and flexibility for more home-based activities.
Conclusions:
Interest in the program was driven by the desire to reduce medications and improve overall quality of life. Appropriately educated and trained exercise providers knowledgeable about RLS are integral to buy-in from stakeholders. This study provides an imperative step in clinical research that can increase the success of subsequent implementation efforts and may accelerate the adoption of exercise programs into practice.
Citation:
Cederberg KLJ, Sikes EM, Mignot E. Stakeholder involvement in the optimization of a patient-centered exercise intervention for people with restless legs syndrome. J Clin Sleep Med. 2024;20(4):535-543.
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