Academic Journal
The hidden burden of narcolepsy type 1: Discordance in psychobehavioral symptoms between patient self-reports and reports from close family members and friends.
| Τίτλος: | The hidden burden of narcolepsy type 1: Discordance in psychobehavioral symptoms between patient self-reports and reports from close family members and friends. |
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| Συγγραφείς: | Mazza S; Université Lyon1, CNRS, INSERM, CRNL, UMR S1028, Lyon, France. Electronic address: stephanie.mazza@univ-lyon1.fr., Fort E; Transport Work and Environmental Epidemiology Research and Surveillance Unit - UMRESTTE (UMR T9405), University Lyon 1, Lyon, France., Martel N; Clinical Research Center, Croix-Rousse Hospital, Hospices Civils de Lyon, Lyon, France., Ricordeau F; Université Lyon1, CNRS, INSERM, CRNL, UMR S1028, Lyon, France; Center for Sleep Medicine, National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Croix-Rousse Hospital, Hospices Civils de Lyon, Lyon 1 University, Lyon, France., Bastuji H; Université Lyon1, CNRS, INSERM, CRNL, UMR S1028, Lyon, France; Center for Sleep Medicine, National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Croix-Rousse Hospital, Hospices Civils de Lyon, Lyon 1 University, Lyon, France., Arnulf I; National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Sleep Disorders Clinic, Pitié-Salpêtrière Hospital, APHP-Sorbonne University, Paris, France., Barateau L; National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Sleep Unit, Department of Neurology, CHU Montpellier, Institute of Neurosciences of Montpellier, Univ Montpellier, Montpellier, France., Bourgin P; CIRCSom (International Research Center for ChronoSomnology), Sleep Disorders Center, National Competence Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Strasbourg University Hospital, Strasbourg, France., Dauvilliers Y; National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Sleep Unit, Department of Neurology, CHU Montpellier, Institute of Neurosciences of Montpellier, Univ Montpellier, Montpellier, France., Debs R; Sleep Unit, Department of Neurology, National Competence Centre for Orphan Diseases, Narcolepsy- Rare Hypersomnias, Pierre-Paul Riquet/Purpan University Hospital, Toulouse, France., Dodet P; National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Sleep Disorders Clinic, Pitié-Salpêtrière Hospital, APHP-Sorbonne University, Paris, France., Dudoignon B; Pediatric Sleep Disorders Center, National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Robert Debre Hospital, AP-HP, Paris, France., Franco P; Université Lyon1, CNRS, INSERM, CRNL, UMR S1028, Lyon, France; Pediatric Sleep Unit and National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Mother-Children's Hospital, Hospices Civils de Lyon, Lyon, France., Hartley S; Sleep Unit, Physiology Department, National Competence Centre for Orphan Diseases, Narcolepsy- Rare Hypersomnias, GHU Paris-Saclay, APHP, Raymond Poincaré Hospital, Garches, France., Lambert I; Sleep Unit, Epileptology and Cerebral Rhythmology, National Competence Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Timone Hospital, APHM, Marseille, France., Lecendreux M; Pediatric Sleep Disorders Center, National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Robert Debre Hospital, AP-HP, Paris, France., Leclair-Visonneau L; Department of Clinical Neurophysiology, National Competence Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, CHU de Nantes, Nantes Université, Nantes, France., Léger D; APHP, Hôtel-Dieu, Centre du Sommeil et de la Vigilance, National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Université Paris Cité, VIFASOM, Paris, France., Lemesle-Martin M; Department of Clinical Neurophysiology, National Competence Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, University Hospital of Dijon, Dijon, France., Léotard A; Sleep Unit, Physiology Department, National Competence Centre for Orphan Diseases, Narcolepsy- Rare Hypersomnias, GHU Paris-Saclay, APHP, Raymond Poincaré Hospital, Garches, France., Leu-Semenescu S; National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Sleep Disorders Clinic, Pitié-Salpêtrière Hospital, APHP-Sorbonne University, Paris, France., Limousin N; Department of Neurology and Clinical Neurophysiology, National Competence Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, University Hospital Bretonneau, Tours, France., Lopez R; National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Sleep Unit, Department of Neurology, CHU Montpellier, Institute of Neurosciences of Montpellier, Univ Montpellier, Montpellier, France., Meslier N; Department of Respiratory and Sleep Medicine, National Competence Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias Angers, University Hospital, Angers, France., Micoulaud-Franchi JA; Sleep Disorders department, National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, CHU Bordeaux, Bordeaux, France., Charley-Mocana C; Neurophysiologie Clinique, National Competence Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Hôpital Roger Salengro, Lille, France., d'Ortho MP; Service de physiologie - Explorations Fonctionnelles, National Competence Centre for Orphan Diseases, Narcolepsy- Rare Hypersomnias, Hôpital Bichat, AP-HP, Université Paris Cité, Inserm, NeuroDiderot, Paris, France., Philip P; Sleep Disorders department, National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, CHU Bordeaux, Bordeaux, France., Ruppert E; CIRCSom (International Research Center for ChronoSomnology), Sleep Disorders Center, National Competence Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Strasbourg University Hospital, Strasbourg, France., de La Tullaye S; Department of Clinical Neurophysiology, National Competence Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, CHU de Nantes, Nantes Université, Nantes, France., Brigandet M; ANC, Association for patients with Narcolepsy Cataplexy and Rare Hypersomnias, France., Charbotel B; Transport Work and Environmental Epidemiology Research and Surveillance Unit - UMRESTTE (UMR T9405), University Lyon 1, Lyon, France., Rolland B; Université Lyon1, CNRS, INSERM, CRNL, UMR S1028, Lyon, France; Service Universitaire d'Addictologie de Lyon, Centre Hospitalier Le Vinatier, Hospices Civils de Lyon, Lyon 1 University, Lyon, France., Peter-Derex L; Université Lyon1, CNRS, INSERM, CRNL, UMR S1028, Lyon, France; Center for Sleep Medicine, National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Croix-Rousse Hospital, Hospices Civils de Lyon, Lyon 1 University, Lyon, France. |
| Πηγή: | Sleep medicine [Sleep Med] 2026 Aug; Vol. 144, pp. 108969. Date of Electronic Publication: 2026 Apr 19. |
| Τύπος έκδοσης: | Journal Article; Multicenter Study |
| Γλώσσα: | English |
| Στοιχεία περιοδικού: | Publisher: Elsevier Science Country of Publication: Netherlands NLM ID: 100898759 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1878-5506 (Electronic) Linking ISSN: 13899457 NLM ISO Abbreviation: Sleep Med Subsets: MEDLINE |
| Imprint Name(s): | Original Publication: Amsterdam ; New York : Elsevier Science, c2000- |
| Ιατρικοί όροι (MeSH): | Narcolepsy*/psychology , Narcolepsy*/diagnosis , Family*/psychology , Self Report*, Humans ; Female ; Adult ; Male ; Cross-Sectional Studies ; Case-Control Studies ; Middle Aged ; Adolescent ; Young Adult ; Symptom Burden ; France ; Severity of Illness Index |
| Περίληψη: | Study Objectives: Narcolepsy type 1 (NT1) is increasingly recognized as a multidimensional disorder in which psychiatric and psychosocial difficulties contribute to disability. Yet little is known about how these difficulties are perceived by patients compared with close informants. This study examined discrepancies between self-reported and informant-reported psychobehavioral symptoms in adults with NT1. Methods: Within the multicenter French NarcoScol-NarcoVitae cross-sectional case-control study, 174 adults with NT1 (18-58 years) and 126 age- and sex-matched non-relative controls completed the Adult Self-Report (ASR), a standardized measure of adult psychobehavioral problems. A close informant completed the parallel Adult Behavior Checklist (ABCL), yielding 97 NT1 and 96 control ASR-ABCL dyads. T-scores were computed for internalizing and externalizing scales, and the total problems score. Between-group differences (NT1 vs non-relative controls) and within-individual discrepancies between self- and informant-reported symptoms were analyzed. Narcolepsy severity (NSS), sleepiness (ESS), age at diagnosis, and a composite professional prognosis score were compared across concordant and discordant dyads. Results: Patients with NT1 reported significantly higher psychiatric symptom severity than controls across all ASR scales, with 44.8% versus 19.1% in the clinical range for internalizing difficulties. Informants generally rated patients' symptom severity as lower than patients' self-reports, particularly for internalizing symptoms. Discordant dyads in which informants rated internalizing symptoms as more severe than patients were characterized by lower NT1 symptom burden (NSS). Concordant patient-informant evaluations were associated with a more favorable professional prognosis. Conclusion: Adults with NT1 report substantial psychobehavioral impairments that are not consistently identified by close informants, especially internalizing difficulties. This perception gap highlights the complementary value of patient and informant perspectives and calls for improved recognition of less visible symptoms within patients' close environment. Clinical Trials: NCT03765892. (Copyright © 2026 Elsevier B.V. All rights reserved.) |
| Competing Interests: | Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. |
| Contributed Indexing: | Keywords: Family perceptions; Informant reports; Internalizing difficulties; Narcolepsy type 1; Psychobehavioral symptoms; Quality of life |
| Molecular Sequence: | ClinicalTrials.gov NCT03765892 |
| SCR Disease Name: | Narcolepsy 1 |
| Entry Date(s): | Date Created: 20260426 Date Completed: 20260715 Latest Revision: 20260715 |
| Update Code: | 20260716 |
| DOI: | 10.1016/j.sleep.2026.108969 |
| PMID: | 42035556 |
| Βάση Δεδομένων: | MEDLINE |
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