Study protocol: A profile of physical performance variables in an outpatient adult population with narcolepsy

Background : Narcolepsy is a sleep disorder characterised by excessive daytime sleepiness and significantly impacts quality of life. People with narcolepsy demonstrate many potential barriers to being physically fit and active, such as sleepiness and social isolation. Very little is known about how physical performance variables may be affected in people with narcolepsy. This study aims to profile the physical fitness of adults with narcolepsy and to explore the relationship between physical fitness and quality of life, symptom severity and disease duration in this cohort. Methods and Analysis : In this cross-sectional observational study, participants will undergo a comprehensive physical performance test battery that will investigate cardiopulmonary fitness, objective measures of physical activity, muscle strength and endurance. Furthermore, quality of life, symptom severity and physical activity will be ascertained through self-report questionnaires. The study population will consist of adults with narcolepsy aged 18-65 years attending the National Narcolepsy Centre located in St. James’s Hospital as an outpatient. Ethics and Dissemination: Ethical approval has been obtained from the St. James’s Hospital and Tallaght University Hospital Research Ethics Committee, and this study is presently underway. The results obtained from this study will be used to help tailor exercise and possible rehabilitation strategies for this population. Dissemination will be sought through peer-reviewed journals, national and international conferences, and through engagement with service user groups. Registration: ClinicalTrials.gov Identifier NCT04419792 ; registered on 5 June 2020.