{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,10]],"date-time":"2026-09-10T00:08:20Z","timestamp":1788998900197,"version":"build-2803163510"},"reference-count":123,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2024,12,1]],"date-time":"2024-12-01T00:00:00Z","timestamp":1733011200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2024,12,1]],"date-time":"2024-12-01T00:00:00Z","timestamp":1733011200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2024,10,18]],"date-time":"2024-10-18T00:00:00Z","timestamp":1729209600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["clinicalkey.fr","clinicalkey.jp","clinicalkey.es","clinicalkey.com.au","clinicalkey.com","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Sleep Medicine"],"published-print":{"date-parts":[[2024,12]]},"DOI":"10.1016\/j.sleep.2024.10.014","type":"journal-article","created":{"date-parts":[[2024,10,10]],"date-time":"2024-10-10T06:31:08Z","timestamp":1728541868000},"page":"510-521","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":6,"special_numbering":"C","title":["Connecting clinicians and patients: The language of narcolepsy"],"prefix":"10.1016","volume":"124","author":[{"given":"Lucie","family":"Barateau","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne Marie","family":"Morse","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Simerpal K.","family":"Gill","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fabio","family":"Pizza","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chad","family":"Ruoff","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"issue":"4","key":"10.1016\/j.sleep.2024.10.014_bib1","first-page":"890","article-title":"Central disorders of hypersomnolence","volume":"26","author":"Trotti","year":"2020","journal-title":"Continuum"},{"issue":"4","key":"10.1016\/j.sleep.2024.10.014_bib2","doi-asserted-by":"crossref","DOI":"10.1111\/jsr.13631","article-title":"Narcolepsy","volume":"31","author":"Barateau","year":"2022","journal-title":"J Sleep Res"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib3","doi-asserted-by":"crossref","first-page":"9","DOI":"10.1016\/j.sleep.2014.10.002","article-title":"Clinical and practical considerations in the pharmacologic management of narcolepsy","volume":"16","author":"Thorpy","year":"2015","journal-title":"Sleep Med"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib4","doi-asserted-by":"crossref","DOI":"10.1212\/WNL.0000000000207815","article-title":"Role of daytime continuous polysomnography in the diagnosis of pediatric narcolepsy type 1","volume":"102","author":"Pizza","year":"2024","journal-title":"Neurology"},{"key":"10.1016\/j.sleep.2024.10.014_bib5","doi-asserted-by":"crossref","first-page":"263","DOI":"10.3390\/neurosci4040022","article-title":"Exploring the literature on narcolepsy: insights into the sleep disorder that strikes during the day","volume":"4","author":"Matota","year":"2023","journal-title":"Neurosci"},{"issue":"2","key":"10.1016\/j.sleep.2024.10.014_bib6","doi-asserted-by":"crossref","first-page":"183","DOI":"10.1016\/j.jsmc.2023.01.003","article-title":"Narcolepsy and idiopathic hypersomnia","volume":"18","author":"Blattner","year":"2023","journal-title":"Sleep Med Clin"},{"issue":"10","key":"10.1016\/j.sleep.2024.10.014_bib7","doi-asserted-by":"crossref","first-page":"1611","DOI":"10.1080\/03007995.2016.1208643","article-title":"The ICSD-3 and DSM-5 guidelines for diagnosing narcolepsy: clinical relevance and practicality","volume":"32","author":"Ruoff","year":"2016","journal-title":"Curr Med Res Opin"},{"issue":"4","key":"10.1016\/j.sleep.2024.10.014_bib8","doi-asserted-by":"crossref","DOI":"10.1111\/jsr.13665","article-title":"The orexin story, sleep and sleep disturbances","volume":"31","author":"Pizza","year":"2022","journal-title":"J Sleep Res"},{"issue":"11","key":"10.1016\/j.sleep.2024.10.014_bib9","doi-asserted-by":"crossref","first-page":"2029","DOI":"10.1212\/WNL.57.11.2029","article-title":"Age at onset of narcolepsy in two large populations of patients in France and Quebec","volume":"57","author":"Dauvilliers","year":"2001","journal-title":"Neurology"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib10","doi-asserted-by":"crossref","first-page":"27","DOI":"10.1093\/sleep\/25.1.27","article-title":"Clinical aspects of narcolepsy-cataplexy across ethnic groups","volume":"25","author":"Okun","year":"2002","journal-title":"Sleep"},{"issue":"9","key":"10.1016\/j.sleep.2024.10.014_bib11","doi-asserted-by":"crossref","first-page":"519","DOI":"10.1038\/s41582-019-0226-9","article-title":"Narcolepsy - clinical spectrum, aetiopathophysiology, diagnosis and treatment","volume":"15","author":"Bassetti","year":"2019","journal-title":"Nat Rev Neurol"},{"issue":"2","key":"10.1016\/j.sleep.2024.10.014_bib12","doi-asserted-by":"crossref","first-page":"83","DOI":"10.1038\/s41583-018-0097-x","article-title":"The neurobiological basis of narcolepsy","volume":"20","author":"Mahoney","year":"2019","journal-title":"Nat Rev Neurosci"},{"issue":"12","key":"10.1016\/j.sleep.2024.10.014_bib13","first-page":"106","article-title":"Narcolepsy in children and adults: a guide to improved recognition, diagnosis and management","volume":"7","author":"Morse","year":"2019","journal-title":"Med Sci"},{"issue":"10","key":"10.1016\/j.sleep.2024.10.014_bib14","doi-asserted-by":"crossref","first-page":"821","DOI":"10.1007\/s40263-017-0464-6","article-title":"Narcolepsy type 1 as an autoimmune disorder: evidence, and implications for pharmacological treatment","volume":"31","author":"Barateau","year":"2017","journal-title":"CNS Drugs"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib15","doi-asserted-by":"crossref","first-page":"78","DOI":"10.3810\/pgm.2014.01.2727","article-title":"The AWAKEN survey: knowledge of narcolepsy among physicians and the general population","volume":"126","author":"Rosenberg","year":"2014","journal-title":"Postgrad Med"},{"issue":"3","key":"10.1016\/j.sleep.2024.10.014_bib16","doi-asserted-by":"crossref","first-page":"447","DOI":"10.1007\/s10072-018-3666-x","article-title":"Red Flags for early referral of people with symptoms suggestive of narcolepsy: a report from a national multidisciplinary panel","volume":"40","author":"Vignatelli","year":"2019","journal-title":"Neurol Sci"},{"issue":"11","key":"10.1016\/j.sleep.2024.10.014_bib17","doi-asserted-by":"crossref","first-page":"1457","DOI":"10.1093\/sleep\/33.11.1457","article-title":"Clinical and therapeutic aspects of childhood narcolepsy-cataplexy: a retrospective study of 51 children","volume":"33","author":"Aran","year":"2010","journal-title":"Sleep"},{"issue":"6","key":"10.1016\/j.sleep.2024.10.014_bib18","doi-asserted-by":"crossref","first-page":"829","DOI":"10.1111\/cns.13811","article-title":"Characterization of rapid weight gain phenotype in children with narcolepsy","volume":"28","author":"Zhang","year":"2022","journal-title":"CNS Neurosci Ther"},{"issue":"12","key":"10.1016\/j.sleep.2024.10.014_bib19","doi-asserted-by":"crossref","first-page":"1649","DOI":"10.5664\/jcsm.6352","article-title":"Growing up with type 1 narcolepsy: its anthropometric and endocrine features","volume":"12","author":"Ponziani","year":"2016","journal-title":"J Clin Sleep Med"},{"issue":"7","key":"10.1016\/j.sleep.2024.10.014_bib20","doi-asserted-by":"crossref","first-page":"521","DOI":"10.1111\/cns.12105","article-title":"Impact of obesity in children with narcolepsy","volume":"19","author":"Inocente","year":"2013","journal-title":"CNS Neurosci Ther"},{"issue":"2","key":"10.1016\/j.sleep.2024.10.014_bib21","doi-asserted-by":"crossref","first-page":"175","DOI":"10.5665\/sleep.2366","article-title":"High prevalence of precocious puberty and obesity in childhood narcolepsy with cataplexy","volume":"36","author":"Poli","year":"2013","journal-title":"Sleep"},{"issue":"9","key":"10.1016\/j.sleep.2024.10.014_bib22","doi-asserted-by":"crossref","first-page":"1147","DOI":"10.1038\/oby.2003.156","article-title":"Hypocretin deficiency in narcoleptic humans is associated with abdominal obesity","volume":"11","author":"Kok","year":"2003","journal-title":"Obes Res"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib23","doi-asserted-by":"crossref","first-page":"221","DOI":"10.1007\/s12325-021-01992-4","article-title":"Current understanding of narcolepsy 1 and its comorbidities: what clinicians need to know","volume":"39","author":"Krahn","year":"2022","journal-title":"Adv Ther"},{"key":"10.1016\/j.sleep.2024.10.014_bib24","doi-asserted-by":"crossref","DOI":"10.1016\/j.smrv.2022.101669","article-title":"Narcolepsy: comorbidities, complexities and future directions","volume":"65","author":"Gudka","year":"2022","journal-title":"Sleep Med Rev"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib25","first-page":"16","article-title":"Narcolepsy and psychiatric disorders: comorbidities or shared pathophysiology?","volume":"6","author":"Morse","year":"2018","journal-title":"Med Sci"},{"issue":"6","key":"10.1016\/j.sleep.2024.10.014_bib26","doi-asserted-by":"crossref","first-page":"488","DOI":"10.1016\/j.sleep.2013.03.002","article-title":"Narcolepsy is complicated by high medical and psychiatric comorbidities: a comparison with the general population","volume":"14","author":"Ohayon","year":"2013","journal-title":"Sleep Med"},{"issue":"12","key":"10.1016\/j.sleep.2024.10.014_bib27","doi-asserted-by":"crossref","DOI":"10.1093\/sleep\/zsz187","article-title":"Clinical autonomic dysfunction in narcolepsy type 1","volume":"42","author":"Barateau","year":"2019","journal-title":"Sleep"},{"key":"10.1016\/j.sleep.2024.10.014_bib28","doi-asserted-by":"crossref","DOI":"10.1111\/jsr.14150","article-title":"Eating disorders in narcolepsy type 1: evidence from a cross-sectional Italian study","author":"Baldini","year":"2024","journal-title":"J Sleep Res"},{"issue":"10","key":"10.1016\/j.sleep.2024.10.014_bib29","doi-asserted-by":"crossref","DOI":"10.1093\/sleep\/zsad161","article-title":"Cardiovascular burden of narcolepsy disease (CV-bond): a real-world evidence study","volume":"46","author":"Ben-Joseph","year":"2023","journal-title":"Sleep"},{"issue":"5","key":"10.1016\/j.sleep.2024.10.014_bib30","doi-asserted-by":"crossref","first-page":"1355","DOI":"10.5664\/jcsm.9862","article-title":"Comorbid parasomnias in narcolepsy and idiopathic hypersomnia: more REM than NREM parasomnias","volume":"18","author":"Leu-Semenescu","year":"2022","journal-title":"J Clin Sleep Med"},{"issue":"5","key":"10.1016\/j.sleep.2024.10.014_bib31","doi-asserted-by":"crossref","first-page":"689","DOI":"10.1093\/sleep\/33.5.689","article-title":"Restless legs syndrome is frequent in narcolepsy with cataplexy patients","volume":"33","author":"Plazzi","year":"2010","journal-title":"Sleep"},{"issue":"2","key":"10.1016\/j.sleep.2024.10.014_bib32","doi-asserted-by":"crossref","first-page":"155","DOI":"10.1111\/j.1365-2869.2011.00942.x","article-title":"Periodic leg movements during sleep in narcoleptic patients with or without restless legs syndrome","volume":"21","author":"Plazzi","year":"2012","journal-title":"J Sleep Res"},{"issue":"8","key":"10.1016\/j.sleep.2024.10.014_bib33","doi-asserted-by":"crossref","first-page":"775","DOI":"10.1016\/j.sleep.2012.10.006","article-title":"Rapid eye movement sleep behavior disorder and rapid eye movement sleep without atonia in narcolepsy","volume":"14","author":"Dauvilliers","year":"2013","journal-title":"Sleep Med"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib34","doi-asserted-by":"crossref","first-page":"7304","DOI":"10.1038\/s41598-018-25547-w","article-title":"Cardiac sympathetic activity differentiates idiopathic and symptomatic rapid eye movement sleep behaviour disorder","volume":"8","author":"Barateau","year":"2018","journal-title":"Sci Rep"},{"issue":"6","key":"10.1016\/j.sleep.2024.10.014_bib35","doi-asserted-by":"crossref","first-page":"924","DOI":"10.1002\/acn3.51056","article-title":"CSF and serum ferritin levels in narcolepsy type 1 comorbid with restless legs syndrome","volume":"7","author":"Barateau","year":"2020","journal-title":"Ann Clin Transl Neurol"},{"issue":"20","key":"10.1016\/j.sleep.2024.10.014_bib36","doi-asserted-by":"crossref","first-page":"e2755","DOI":"10.1212\/WNL.0000000000010737","article-title":"Depression and suicidal thoughts in untreated and treated narcolepsy: systematic analysis","volume":"95","author":"Barateau","year":"2020","journal-title":"Neurology"},{"issue":"10","key":"10.1016\/j.sleep.2024.10.014_bib37","doi-asserted-by":"crossref","DOI":"10.1093\/sleep\/zsad213","article-title":"Cardiovascular burden of narcolepsy: what have we learned and what do we still need to know?","volume":"46","author":"Barateau","year":"2023","journal-title":"Sleep"},{"issue":"2","key":"10.1016\/j.sleep.2024.10.014_bib38","doi-asserted-by":"crossref","first-page":"171","DOI":"10.4088\/JCP.15m10262","article-title":"High rates of psychiatric comorbidity in narcolepsy: findings from the burden of narcolepsy disease (BOND) study of 9,312 patients in the United States","volume":"78","author":"Ruoff","year":"2017","journal-title":"J Clin Psychiatry"},{"key":"10.1016\/j.sleep.2024.10.014_bib39","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1016\/j.sleep.2016.04.004","article-title":"Medical comorbidity in narcolepsy: findings from the Burden of Narcolepsy Disease (BOND) study","volume":"33","author":"Black","year":"2017","journal-title":"Sleep Med"},{"issue":"6","key":"10.1016\/j.sleep.2024.10.014_bib40","doi-asserted-by":"crossref","first-page":"835","DOI":"10.5665\/sleep.2706","article-title":"Comorbidity and mortality of narcolepsy: a controlled retro- and prospective national study","volume":"36","author":"Jennum","year":"2013","journal-title":"Sleep"},{"issue":"Supplement_1","key":"10.1016\/j.sleep.2024.10.014_bib41","doi-asserted-by":"crossref","first-page":"A288","DOI":"10.1093\/sleep\/zsae067.0673","article-title":"The burden of living with narcolepsy: patient perspectives from in-depth qualitative interviews","volume":"47","author":"Doane","year":"2024","journal-title":"Sleep"},{"issue":"3","key":"10.1016\/j.sleep.2024.10.014_bib42","doi-asserted-by":"crossref","first-page":"419","DOI":"10.5664\/jcsm.6494","article-title":"Listening to the patient voice in narcolepsy: diagnostic delay, disease burden, and treatment efficacy","volume":"13","author":"Maski","year":"2017","journal-title":"J Clin Sleep Med"},{"issue":"4","key":"10.1016\/j.sleep.2024.10.014_bib43","doi-asserted-by":"crossref","first-page":"643","DOI":"10.5664\/jcsm.11014","article-title":"Brain fog in central disorders of hypersomnolence: a review","volume":"20","author":"Rosenberg","year":"2024","journal-title":"J Clin Sleep Med"},{"issue":"6","key":"10.1016\/j.sleep.2024.10.014_bib44","doi-asserted-by":"crossref","first-page":"709","DOI":"10.1111\/jsr.12420","article-title":"Diagnostic delay in narcolepsy type 1: combining the patients' and the doctors' perspectives","volume":"25","author":"Taddei","year":"2016","journal-title":"J Sleep Res"},{"key":"10.1016\/j.sleep.2024.10.014_bib45","doi-asserted-by":"crossref","first-page":"1031","DOI":"10.2147\/NSS.S359980","article-title":"Idling for decades: a European study on risk factors associated with the delay before a narcolepsy diagnosis","volume":"14","author":"Zhang","year":"2022","journal-title":"Nat Sci Sleep"},{"issue":"5","key":"10.1016\/j.sleep.2024.10.014_bib46","doi-asserted-by":"crossref","first-page":"502","DOI":"10.1016\/j.sleep.2014.01.015","article-title":"Delayed diagnosis of narcolepsy: characterization and impact","volume":"15","author":"Thorpy","year":"2014","journal-title":"Sleep Med"},{"issue":"5","key":"10.1016\/j.sleep.2024.10.014_bib47","doi-asserted-by":"crossref","first-page":"482","DOI":"10.1111\/jsr.12044","article-title":"Clinical, polysomnographic and genome-wide association analyses of narcolepsy with cataplexy: a European Narcolepsy Network study","volume":"22","author":"Luca","year":"2013","journal-title":"J Sleep Res"},{"issue":"9","key":"10.1016\/j.sleep.2024.10.014_bib48","doi-asserted-by":"crossref","first-page":"2815","DOI":"10.1111\/ene.14888","article-title":"European guideline and expert statements on the management of narcolepsy in adults and children","volume":"28","author":"Bassetti","year":"2021","journal-title":"Eur J Neurol"},{"key":"10.1016\/j.sleep.2024.10.014_bib49","doi-asserted-by":"crossref","first-page":"A26","DOI":"10.1093\/sleepadvances\/zpad035.066","article-title":"The lived experience of narcolepsy - from symptoms to stigma","volume":"4","author":"Schokman","year":"2023","journal-title":"Sleep Adv"},{"key":"10.1016\/j.sleep.2024.10.014_bib50","unstructured":"US Food and Drug Administration (FDA). The Voice of the Patient. Report date June 2014. Available from: https:\/\/www.fda.gov\/media\/88736\/download."},{"key":"10.1016\/j.sleep.2024.10.014_bib51","unstructured":"Project Sleep. Narcolepsy and idiopathic hypersomnia. FDA patient-led listening session summary report. Timely patient perspectives from the narcolepsy and idiopathic hypersomnia community: unmet needs, real-life impacts, and current treatments. Available from: https:\/\/project-sleep.com\/wp-content\/uploads\/2022\/12\/Narcolepsy-Idiopathic-Hypersomnia-FDA-Patient-Listening-Session-Summary-2022-FINAL.pdf."},{"key":"10.1016\/j.sleep.2024.10.014_bib52","series-title":"International classification of sleep disorders, 3rd ed - text revision (ICSD-3-TR)","year":"2023"},{"key":"10.1016\/j.sleep.2024.10.014_bib53","doi-asserted-by":"crossref","first-page":"1083","DOI":"10.2147\/NSS.S278046","article-title":"Recognizing the symptom spectrum of narcolepsy to improve timely diagnosis: a narrative review","volume":"13","author":"Quaedackers","year":"2021","journal-title":"Nat Sci Sleep"},{"key":"10.1016\/j.sleep.2024.10.014_bib54","doi-asserted-by":"crossref","first-page":"97","DOI":"10.1016\/j.ejpn.2022.12.009","article-title":"Approach to a sleepy child: diagnosis and treatment of excessive daytime sleepiness in children and adolescents","volume":"42","author":"Bruni","year":"2023","journal-title":"Eur J Paediatr Neurol"},{"key":"10.1016\/j.sleep.2024.10.014_bib55","doi-asserted-by":"crossref","DOI":"10.1177\/13591053231221373","article-title":"'It's like tumbleweeds everywhere': an Interpretative Phenomenological Analysis of the lived experience of being diagnosed with and living with narcolepsy","author":"Kilmartin","year":"2024","journal-title":"J Health Psychol"},{"issue":"3","key":"10.1016\/j.sleep.2024.10.014_bib56","doi-asserted-by":"crossref","first-page":"225","DOI":"10.1055\/s-2004-835070","article-title":"Approach to the patient with a sleep complaint","volume":"24","author":"Thorpy","year":"2004","journal-title":"Semin Neurol"},{"issue":"11","key":"10.1016\/j.sleep.2024.10.014_bib57","first-page":"832","article-title":"What are the most common conditions in primary care? Systematic review","volume":"64","author":"Finley","year":"2018","journal-title":"Can Fam Physician"},{"issue":"11","key":"10.1016\/j.sleep.2024.10.014_bib58","doi-asserted-by":"crossref","first-page":"674","DOI":"10.4103\/SINGAPOREMEDJ.SMJ-2021-118","article-title":"Approach to fatigue in primary care","volume":"63","author":"Hui Ho","year":"2022","journal-title":"Singapore Med J"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib59","first-page":"58","article-title":"Fatigue in adults: evaluation and management","volume":"108","author":"Latimer","year":"2023","journal-title":"Am Fam Physician"},{"issue":"5","key":"10.1016\/j.sleep.2024.10.014_bib60","doi-asserted-by":"crossref","first-page":"1235","DOI":"10.5664\/jcsm.9780","article-title":"Sleepy, tired, drowsy, and fatigue have different meanings for a university student sample","volume":"18","author":"Long","year":"2022","journal-title":"J Clin Sleep Med"},{"issue":"7","key":"10.1016\/j.sleep.2024.10.014_bib61","doi-asserted-by":"crossref","first-page":"715","DOI":"10.1016\/j.neurol.2023.07.004","article-title":"Evaluation of hypersomnolence: from symptoms to diagnosis, a multidimensional approach","volume":"179","author":"Peter-Derex","year":"2023","journal-title":"Rev Neurol (Paris)"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib62","first-page":"15","article-title":"Clinical complaints of daytime sleepiness and fatigue: how to distinguish and treat them, especially when they become 'excessive' or 'chronic'?","volume":"110","author":"Neu","year":"2010","journal-title":"Acta Neurol Belg"},{"issue":"4","key":"10.1016\/j.sleep.2024.10.014_bib63","doi-asserted-by":"crossref","first-page":"597","DOI":"10.5664\/jcsm.8286","article-title":"Giving a voice to cataplectic experience: recollections from patients with narcolepsy type 1","volume":"16","author":"Franceschini","year":"2020","journal-title":"J Clin Sleep Med"},{"issue":"6","key":"10.1016\/j.sleep.2024.10.014_bib64","doi-asserted-by":"crossref","first-page":"20","DOI":"10.1097\/01.JAA.0000750944.46705.36","article-title":"Narcolepsy: a clinical review","volume":"34","author":"Anderson","year":"2021","journal-title":"Jaapa"},{"key":"10.1016\/j.sleep.2024.10.014_bib65","doi-asserted-by":"crossref","first-page":"727","DOI":"10.1016\/j.neurol.2023.08.001","article-title":"Narcolepsies, update in 2023","volume":"179","author":"Barateau","year":"2023","journal-title":"Rev Neurol (Paris)"},{"issue":"Pt 12","key":"10.1016\/j.sleep.2024.10.014_bib66","doi-asserted-by":"crossref","first-page":"3787","DOI":"10.1093\/brain\/awt277","article-title":"Clinical and polysomnographic course of childhood narcolepsy with cataplexy","volume":"136","author":"Pizza","year":"2013","journal-title":"Brain"},{"issue":"Pt 12","key":"10.1016\/j.sleep.2024.10.014_bib67","first-page":"3477","article-title":"Complex movement disorders at disease onset in childhood narcolepsy with cataplexy","volume":"134","author":"Plazzi","year":"2011","journal-title":"Brain"},{"issue":"6","key":"10.1016\/j.sleep.2024.10.014_bib68","doi-asserted-by":"crossref","first-page":"e95","DOI":"10.1093\/pch\/pxx205","article-title":"A retrospective analysis of clinical characteristics of childhood narcolepsy","volume":"23","author":"Dhanju","year":"2018","journal-title":"Paediatr Child Health"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib69","doi-asserted-by":"crossref","first-page":"12","DOI":"10.1016\/j.sleep.2010.05.010","article-title":"The clinical features of cataplexy: a questionnaire study in narcolepsy patients with and without hypocretin-1 deficiency","volume":"12","author":"Overeem","year":"2011","journal-title":"Sleep Med"},{"issue":"5","key":"10.1016\/j.sleep.2024.10.014_bib70","doi-asserted-by":"crossref","DOI":"10.1093\/sleep\/zsy026","article-title":"The distinguishing motor features of cataplexy: a study from video-recorded attacks","volume":"41","author":"Pizza","year":"2018","journal-title":"Sleep"},{"key":"10.1016\/j.sleep.2024.10.014_bib71","doi-asserted-by":"crossref","first-page":"105","DOI":"10.17925\/ENR.2008.03.02.105","article-title":"The impact of narcolepsy and its treatment \u2013 a European study","author":"Shneerson","year":"2008","journal-title":"Eur Neurol Rev"},{"issue":"6","key":"10.1016\/j.sleep.2024.10.014_bib72","doi-asserted-by":"crossref","first-page":"497","DOI":"10.3322\/caac.21573","article-title":"Tools to facilitate communication during physician-patient consultations in cancer care: an overview of systematic reviews","volume":"69","author":"Licqurish","year":"2019","journal-title":"CA Cancer J Clin"},{"issue":"2","key":"10.1016\/j.sleep.2024.10.014_bib73","doi-asserted-by":"crossref","first-page":"252","DOI":"10.1016\/j.pec.2011.04.020","article-title":"Implementing patient question-prompt lists into routine cancer care","volume":"86","author":"Dimoska","year":"2012","journal-title":"Patient Educ Counsel"},{"key":"10.1016\/j.sleep.2024.10.014_bib74","doi-asserted-by":"crossref","DOI":"10.3389\/frsle.2024.1379132","article-title":"Development of a pediatric narcolepsy patient-reported outcomes scale","volume":"3","author":"Wang","year":"2024","journal-title":"Front Sleep"},{"key":"10.1016\/j.sleep.2024.10.014_bib75","unstructured":"Italian Association of Narcoleptics and Hypersomniacs. Cataplexy. Available from: https:\/\/www.narcolessia.org\/cataplessia\/. Accessed September 2024."},{"issue":"5","key":"10.1016\/j.sleep.2024.10.014_bib76","doi-asserted-by":"crossref","first-page":"311","DOI":"10.1016\/j.smrv.2011.01.007","article-title":"Lifetime prevalence rates of sleep paralysis: a systematic review","volume":"15","author":"Sharpless","year":"2011","journal-title":"Sleep Med Rev"},{"issue":"4","key":"10.1016\/j.sleep.2024.10.014_bib77","doi-asserted-by":"crossref","first-page":"395","DOI":"10.1111\/j.1365-2869.2004.00422.x","article-title":"The clinical spectrum of narcolepsy with cataplexy: a reappraisal","volume":"13","author":"Sturzenegger","year":"2004","journal-title":"J Sleep Res"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib78","doi-asserted-by":"crossref","first-page":"38","DOI":"10.1111\/jsr.12441","article-title":"Terror and bliss? Commonalities and distinctions between sleep paralysis, lucid dreaming, and their associations with waking life experiences","volume":"26","author":"Denis","year":"2017","journal-title":"J Sleep Res"},{"key":"10.1016\/j.sleep.2024.10.014_bib79","doi-asserted-by":"crossref","first-page":"453","DOI":"10.2147\/NSS.S162762","article-title":"Living with narcolepsy: current management strategies, future prospects, and overlooked real-life concerns","volume":"12","author":"Barker","year":"2020","journal-title":"Nat Sci Sleep"},{"key":"10.1016\/j.sleep.2024.10.014_bib80","first-page":"6","article-title":"Auditory hallucinations in schizophrenia: the role of cognitive, brain structural and genetic disturbances in the left temporal lobe","volume":"1","author":"Hugdahl","year":"2007","journal-title":"Front Hum Neurosci"},{"issue":"6","key":"10.1016\/j.sleep.2024.10.014_bib81","doi-asserted-by":"crossref","DOI":"10.1093\/sleep\/zsaa009","article-title":"Narcolepsy Severity Scale: a reliable tool assessing symptom severity and consequences","volume":"43","author":"Dauvilliers","year":"2020","journal-title":"Sleep"},{"issue":"Supplement_9","key":"10.1016\/j.sleep.2024.10.014_bib82","doi-asserted-by":"crossref","first-page":"S61","DOI":"10.1093\/sleep\/19.suppl_9.S61","article-title":"Sleep fragmentation in obstructive sleep apnea","volume":"19","author":"Kimoff","year":"1996","journal-title":"Sleep"},{"issue":"Supplement_1","key":"10.1016\/j.sleep.2024.10.014_bib83","article-title":"Understanding daytime and nighttime treatment needs from the patient\u2019s perspective: a survey of people living with narcolepsy","volume":"46","author":"Ortiz","year":"2023","journal-title":"Sleep"},{"issue":"9","key":"10.1016\/j.sleep.2024.10.014_bib84","doi-asserted-by":"crossref","first-page":"955","DOI":"10.5664\/jcsm.3004","article-title":"Disrupted nighttime sleep in narcolepsy","volume":"9","author":"Roth","year":"2013","journal-title":"J Clin Sleep Med"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib85","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1037\/a0025730","article-title":"(Mis)perception of sleep in insomnia: a puzzle and a resolution","volume":"138","author":"Harvey","year":"2012","journal-title":"Psychol Bull"},{"issue":"3","key":"10.1016\/j.sleep.2024.10.014_bib86","doi-asserted-by":"crossref","first-page":"352","DOI":"10.1016\/j.pec.2011.05.002","article-title":"Doctor, what's wrong with me? Factors that delay the diagnosis of colorectal cancer","volume":"84","author":"Siminoff","year":"2011","journal-title":"Patient Educ Counsel"},{"issue":"11s","key":"10.1016\/j.sleep.2024.10.014_bib87","doi-asserted-by":"crossref","DOI":"10.1097\/ACM.0000000000004323","article-title":"The basic science of patient-physician communication: a critical scoping review","volume":"96","author":"Forsey","year":"2021","journal-title":"Acad Med"},{"issue":"3","key":"10.1016\/j.sleep.2024.10.014_bib88","doi-asserted-by":"crossref","first-page":"401","DOI":"10.5664\/jcsm.5594","article-title":"The humanistic and economic burden of narcolepsy","volume":"12","author":"Flores","year":"2016","journal-title":"J Clin Sleep Med"},{"issue":"12","key":"10.1016\/j.sleep.2024.10.014_bib89","doi-asserted-by":"crossref","first-page":"2751","DOI":"10.5664\/jcsm.10212","article-title":"The impact of narcolepsy on social relationships in young adults","volume":"18","author":"Davidson","year":"2022","journal-title":"J Clin Sleep Med"},{"issue":"5","key":"10.1016\/j.sleep.2024.10.014_bib90","first-page":"233","article-title":"The medical and economic burden of narcolepsy: implications for managed care","volume":"10","author":"Thorpy","year":"2017","journal-title":"Am Health Drug Benefits"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib91","doi-asserted-by":"crossref","first-page":"61","DOI":"10.1016\/j.jsmc.2016.10.001","article-title":"Reducing the clinical and socioeconomic burden of narcolepsy by earlier diagnosis and effective treatment","volume":"12","author":"Thorpy","year":"2017","journal-title":"Sleep Med Clin"},{"issue":"9","key":"10.1016\/j.sleep.2024.10.014_bib92","doi-asserted-by":"crossref","first-page":"2863","DOI":"10.1111\/ene.14954","article-title":"Awakening to sleep disorders in Europe: survey on education, knowledge and treatment competence of European residents and neurologists","volume":"28","author":"Rakusa","year":"2021","journal-title":"Eur J Neurol"},{"issue":"13","key":"10.1016\/j.sleep.2024.10.014_bib93","doi-asserted-by":"crossref","first-page":"597","DOI":"10.1212\/WNL.0000000000006239","article-title":"Incorporating sleep medicine content into medical school through neuroscience core curricula","volume":"91","author":"Salas","year":"2018","journal-title":"Neurology"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib94","doi-asserted-by":"crossref","first-page":"10","DOI":"10.1016\/j.amjmed.2014.05.037","article-title":"Narcolepsy: let the patient\u2019s voice awaken us!","volume":"128","author":"Flygare","year":"2015","journal-title":"Am J Med"},{"issue":"3","key":"10.1016\/j.sleep.2024.10.014_bib95","doi-asserted-by":"crossref","first-page":"216","DOI":"10.3810\/pgm.2014.05.2769","article-title":"Patients' journeys to a narcolepsy diagnosis: a physician survey and retrospective chart review","volume":"126","author":"Carter","year":"2014","journal-title":"Postgrad Med"},{"key":"10.1016\/j.sleep.2024.10.014_bib96","doi-asserted-by":"crossref","first-page":"405","DOI":"10.1016\/j.sleep.2021.06.008","article-title":"The Nexus Narcolepsy Registry: methodology, study population characteristics, and patterns and predictors of narcolepsy diagnosis","volume":"84","author":"Ohayon","year":"2021","journal-title":"Sleep Med"},{"key":"10.1016\/j.sleep.2024.10.014_bib97","first-page":"1","article-title":"The burden of narcolepsy in adults: a population sampling study using personal media","author":"Quaedackers","year":"2023","journal-title":"Behav Sleep Med"},{"issue":"7","key":"10.1016\/j.sleep.2024.10.014_bib98","doi-asserted-by":"crossref","first-page":"1769","DOI":"10.5664\/jcsm.9966","article-title":"Portrayals of narcolepsy from 1980 to 2020: a descriptive analysis of stigmatizing content in newspaper articles","volume":"18","author":"Varallo","year":"2022","journal-title":"J Clin Sleep Med"},{"key":"10.1016\/j.sleep.2024.10.014_bib99","unstructured":"Italian Association of Narcoleptics and Hypersomniacs. Red flags of narcolepsy. Available from: https:\/\/www.narcolessia.org\/red-flags-per-la-narcolessia\/."},{"issue":"15","key":"10.1016\/j.sleep.2024.10.014_bib100","doi-asserted-by":"crossref","first-page":"2171","DOI":"10.3390\/healthcare11152171","article-title":"Patient experiences of communication with healthcare professionals on their healthcare management around chronic respiratory diseases","volume":"11","author":"Zhang","year":"2023","journal-title":"Healthcare (Basel)"},{"key":"10.1016\/j.sleep.2024.10.014_bib101","unstructured":"Narcolepsy Ireland. Jargon buster. Available from: https:\/\/narcolepsyireland.org\/jargon-buster."},{"key":"10.1016\/j.sleep.2024.10.014_bib102","unstructured":"Wake Up Narcolepsy. What does that mean? Terms to know when talking about narcolepsy. Available from: https:\/\/www.wakeupnarcolepsy.org\/narcolepsy-101\/."},{"issue":"5","key":"10.1016\/j.sleep.2024.10.014_bib103","doi-asserted-by":"crossref","first-page":"zsad323","DOI":"10.1093\/sleep\/zsad323","article-title":"Narcolepsy severity scale-2 and idiopathic hypersomnia severity scale to better quantify symptoms severity and consequences in narcolepsy type 2","volume":"47","author":"Barateau","year":"2024","journal-title":"Sleep"},{"issue":"5","key":"10.1016\/j.sleep.2024.10.014_bib104","doi-asserted-by":"crossref","DOI":"10.1093\/sleep\/zsae047","article-title":"Narcolepsy type 2: phenotype is fundamental","volume":"47","author":"Trotti","year":"2024","journal-title":"Sleep"},{"issue":"2","key":"10.1016\/j.sleep.2024.10.014_bib105","doi-asserted-by":"crossref","first-page":"605","DOI":"10.1007\/s11325-019-01867-7","article-title":"Excessive daytime sleepiness in narcolepsy and central nervous system hypersomnias","volume":"24","author":"Pizza","year":"2020","journal-title":"Sleep Breath"},{"issue":"4\u20135","key":"10.1016\/j.sleep.2024.10.014_bib106","doi-asserted-by":"crossref","first-page":"340","DOI":"10.1177\/0009922820903434","article-title":"Evaluation and treatment of children and adolescents with excessive daytime sleepiness","volume":"59","author":"Owens","year":"2020","journal-title":"Clin Pediatr (Phila)."},{"key":"10.1016\/j.sleep.2024.10.014_bib107","doi-asserted-by":"crossref","first-page":"21","DOI":"10.1016\/j.pediatrneurol.2018.06.008","article-title":"Clinical characteristics and burden of illness in pediatric patients with narcolepsy","volume":"85","author":"Plazzi","year":"2018","journal-title":"Pediatr Neurol"},{"issue":"6","key":"10.1016\/j.sleep.2024.10.014_bib108","doi-asserted-by":"crossref","first-page":"785","DOI":"10.5664\/jcsm.5866","article-title":"Recommended amount of sleep for pediatric populations: a consensus statement of the American academy of sleep medicine","volume":"12","author":"Paruthi","year":"2016","journal-title":"J Clin Sleep Med"},{"key":"10.1016\/j.sleep.2024.10.014_bib109","doi-asserted-by":"crossref","first-page":"70","DOI":"10.1016\/j.smrv.2017.04.003","article-title":"The clinical spectrum of childhood narcolepsy","volume":"38","author":"Postiglione","year":"2018","journal-title":"Sleep Med Rev"},{"issue":"2","key":"10.1016\/j.sleep.2024.10.014_bib110","doi-asserted-by":"crossref","first-page":"371","DOI":"10.1016\/j.ccm.2010.02.014","article-title":"Clinical features, diagnosis and treatment of narcolepsy","volume":"31","author":"Ahmed","year":"2010","journal-title":"Clin Chest Med"},{"issue":"4","key":"10.1016\/j.sleep.2024.10.014_bib111","doi-asserted-by":"crossref","first-page":"739","DOI":"10.1007\/s13311-012-0150-9","article-title":"A practical guide to the therapy of narcolepsy and hypersomnia syndromes","volume":"9","author":"Mignot","year":"2012","journal-title":"Neurotherapeutics"},{"issue":"7","key":"10.1016\/j.sleep.2024.10.014_bib112","doi-asserted-by":"crossref","first-page":"386","DOI":"10.1038\/nrneurol.2014.97","article-title":"Cataplexy--clinical aspects, pathophysiology and management strategy","volume":"10","author":"Dauvilliers","year":"2014","journal-title":"Nat Rev Neurol"},{"key":"10.1016\/j.sleep.2024.10.014_bib113","doi-asserted-by":"crossref","first-page":"E433","DOI":"10.1016\/j.jns.2015.09.058","article-title":"Narcolepsy type 1 clinical symptoms misdiagnosed for epileptic seizures","volume":"357","author":"Tormasiova","year":"2015","journal-title":"J Neurol Sci"},{"issue":"2","key":"10.1016\/j.sleep.2024.10.014_bib114","doi-asserted-by":"crossref","first-page":"169","DOI":"10.1046\/j.1365-2869.2002.00297.x","article-title":"Situational factors affecting sleep paralysis and associated hallucinations: position and timing effects","volume":"11","author":"Cheyne","year":"2002","journal-title":"J Sleep Res"},{"issue":"6","key":"10.1016\/j.sleep.2024.10.014_bib115","doi-asserted-by":"crossref","DOI":"10.1093\/sleep\/zsac054","article-title":"Linking clinical complaints and objective measures of disrupted nighttime sleep in narcolepsy type 1","volume":"45","author":"Barateau","year":"2022","journal-title":"Sleep"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib116","doi-asserted-by":"crossref","first-page":"289","DOI":"10.5664\/jcsm.9638","article-title":"Disrupted nighttime sleep and sleep instability in narcolepsy","volume":"18","author":"Maski","year":"2022","journal-title":"J Clin Sleep Med"},{"issue":"21","key":"10.1016\/j.sleep.2024.10.014_bib117","doi-asserted-by":"crossref","first-page":"e2900","DOI":"10.1212\/WNL.0000000000010743","article-title":"Association of CSF orexin-A levels and nocturnal sleep stability in patients with hypersomnolence","volume":"95","author":"Barateau","year":"2020","journal-title":"Neurology"},{"issue":"7","key":"10.1016\/j.sleep.2024.10.014_bib118","doi-asserted-by":"crossref","first-page":"1363","DOI":"10.5664\/jcsm.9198","article-title":"Narcolepsy type 1 features across the life span: age impact on clinical and polysomnographic phenotype","volume":"17","author":"Lividini","year":"2021","journal-title":"J Clin Sleep Med"},{"issue":"6","key":"10.1016\/j.sleep.2024.10.014_bib119","doi-asserted-by":"crossref","first-page":"1669","DOI":"10.1093\/brain\/awx096","article-title":"The spectrum of REM sleep-related episodes in children with type 1 narcolepsy","volume":"140","author":"Antelmi","year":"2017","journal-title":"Brain"},{"issue":"5","key":"10.1016\/j.sleep.2024.10.014_bib120","doi-asserted-by":"crossref","first-page":"e476","DOI":"10.1212\/WNL.0000000000012272","article-title":"Measurement of narcolepsy symptoms in school-aged children and adolescents: the pediatric narcolepsy severity scale","volume":"97","author":"Barateau","year":"2021","journal-title":"Neurology"},{"issue":"14","key":"10.1016\/j.sleep.2024.10.014_bib121","doi-asserted-by":"crossref","first-page":"1358","DOI":"10.1212\/WNL.0000000000003787","article-title":"Measurement of narcolepsy symptoms: the narcolepsy severity scale","volume":"88","author":"Dauvilliers","year":"2017","journal-title":"Neurology"},{"issue":"19","key":"10.1016\/j.sleep.2024.10.014_bib122","doi-asserted-by":"crossref","first-page":"e1964","DOI":"10.1212\/WNL.0000000000200187","article-title":"Development and validation of the pediatric hypersomnolence survey","volume":"98","author":"Maski","year":"2022","journal-title":"Neurology"},{"issue":"1","key":"10.1016\/j.sleep.2024.10.014_bib123","doi-asserted-by":"crossref","first-page":"52","DOI":"10.1111\/j.1365-2869.1994.tb00104.x","article-title":"The Ullanlinna Narcolepsy Scale: validation of a measure of symptoms in the narcoleptic syndrome","volume":"3","author":"Hublin","year":"1994","journal-title":"J Sleep Res"}],"container-title":["Sleep Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1389945724004805?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1389945724004805?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,1,25]],"date-time":"2025-01-25T04:19:30Z","timestamp":1737778770000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1389945724004805"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,12]]},"references-count":123,"alternative-id":["S1389945724004805"],"URL":"https:\/\/doi.org\/10.1016\/j.sleep.2024.10.014","relation":{},"ISSN":["1389-9457"],"issn-type":[{"value":"1389-9457","type":"print"}],"subject":[],"published":{"date-parts":[[2024,12]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Connecting clinicians and patients: The language of narcolepsy","name":"articletitle","label":"Article Title"},{"value":"Sleep Medicine","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.sleep.2024.10.014","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2024 The Authors. Published by Elsevier B.V.","name":"copyright","label":"Copyright"}]}}