Summary To date, there has been no systematic analysis of the literature regarding health‐related quality of life in narcolepsy. This systematic review aimed to examine the impact of narcolepsy on health‐related quality of life, measured through standardised health‐related quality of life questionnaires such as the Short Form 36 and Functional Outcome of Sleep Questionnaire. The following databases: Medline, Embase, Cinahl, and Web of Science were searched for studies that investigated health‐related quality of life in adults with narcolepsy. Studies were reviewed independently by two reviewers, and a random‐effects meta‐analysis was performed. A total of 30 studies were eligible for inclusion in the review. Additionally, meta‐analyses were conducted for the Short Form 36 and the EQ5D. The Short Form 36 meta‐analysis identified that the pooled mean scores for the Physical Component Summary (45.91) were less affected than the Mental Component Summary (42.98). People with narcolepsy experience substantially lower health‐related quality of life when compared with the general population norms of the USA, UK, France and Norway, as well as compared with people with chronic diseases such as multiple sclerosis, diabetes, hypertension and epilepsy. Further research is warranted to identify the longitudinal effects of narcolepsy on health‐related quality of life, and to develop a narcolepsy‐specific health‐related quality of life tool.

Introduction Narcolepsy is a neurological condition that has been associated with considerable detriment to daily life including impaired quality of life, occupational and academic difficulties and adversely affected social and personal relationships. To date, there has been no systematic analysis of the literature regarding health-related quality of life (HRQoL) in Narcolepsy. This systematic review aimed to examine the impact of narcolepsy on HRQoL, measured through standardised HRQoL questionnaires such as the Short Form 36 (SF36). Methods Medline, Embase, Cinahl and Web of Science were searched for studies which investigated HRQoL in adults with narcolepsy. Studies were reviewed independently by two reviewers, and a random-effects meta-analysis was performed. The methodological quality of the included studies was assessed using a modified version of the Joanna Briggs Institute Checklist for Analytical Cross Sectional Studies tool. The impact of study variables and characteristics on HRQoL was assessed using Spearman’s Correlation analyses with adjusted r2 values. Results A total of 30 studies were eligible for inclusion in the review. Additionally, meta-analyses were conducted for the SF36 and the EQ5D. The SF36 meta-analysis identified that the pooled mean scores for the Physical Component Summary (45.91) were less affected than the Mental Component Summary (42.98). The HRQoL of people with narcolepsy was compared to general population norms (US, UK, France and Norway) and to people with chronic diseases including multiple sclerosis, diabetes, and epilepsy. Conclusion People with narcolepsy report significant impairments in HRQoL when compared to the general population and other chronic health conditions including epilepsy, multiple sclerosis, diabetes and hypertension, especially concerning their mental wellbeing. Further research is warranted to identify the longitudinal effects of narcolepsy on HRQoL and to develop a narcolepsy-specific HRQoL tool. Support (if any) This review was completed as part of Mr Ragy Tadrous’ Master of Science (MSc) degree in Trinity College Dublin. This degree was co-sponsored by the Physiotherapy Department in St. James’s Hospital, Dublin.

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.

Introduction Narcolepsy can significantly impact the physical and mental wellbeing of people with narcolepsy, and has been associated with significant reductions in quality of life and physical performance. People with narcolepsy demonstrate many barriers to being physically fit and active, such as sleepiness and social isolation. Despite physical functioning and vitality being the most affected domains of health-related quality of life in this cohort, little is known about how physical performance variables are affected in people with narcolepsy. Methods This cross-sectional study profiled the physical performance of adults with narcolepsy attending the Narcolepsy Centre located in St. James’s Hospital. Participants underwent a physical performance test battery that investigated cardiopulmonary fitness, physical activity, muscle strength and endurance. Furthermore, health-related quality of life (HRQoL), symptom severity and sedentary behaviour was ascertained through self-report questionnaires. Results A total of 23 participants were recruited in this study. The majority of participants were female (n=13, 56.52%) and the mean age was 31.53 (± 13.17) years. Physical performance was generally found to be lower than age-and-gender matched normative values for cardiopulmonary fitness, physical activity and muscle strength and endurance. Participants’ completed 42.20 ± 21.41 minutes of moderate-vigorous physical activity daily as measured by actigraphy. Considerable sedentary behaviour was objectively measured in this sample (10.21 hours). Symptom severity was high as measured by the Epworth Sleepiness Scale and the Narcolepsy Severity Scale, and participants reported reduced quality of life when compared to general population norms (US, UK, France and Norway). Conclusion Markedly reduced physical performance was identified in this sample of people with narcolepsy, irrespective of participant age, gender and BMI. Future research should explore the role of exercise in improving the physical fitness in people with narcolepsy, and the influence of exercise on HRQoL and symptom severity in this cohort. Support (if any) This study was completed as part of Mr Ragy Tadrous’ Master of Science (MSc) degree in Trinity College Dublin. This degree was co-sponsored by the Physiotherapy Department in St. James’s Hospital, Dublin.