The Burden of Narcolepsy in Adults: A Population Sampling Study Using Personal Media.

IF 2.2 3区医学 Q3 CLINICAL NEUROLOGY

Behavioral Sleep Medicine Pub Date : 2024-03-03 Epub Date: 2023-05-29 DOI:10.1080/15402002.2023.2217971

L Quaedackers, M M Van Gilst, I Van Den Brandt, A Vilanova, G J Lammers, P Markopoulos, S Overeem

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引用次数: 0

Abstract

Objective: To obtain insight in the spectrum of narcolepsy symptoms and associated burden in a large cohort of patients.

Methods: We used the Narcolepsy Monitor, a mobile app, to easily rate the presence and burden of 20 narcolepsy symptoms. Baseline measures were obtained and analyzed from 746 users aged between 18 and 75 years with a reported diagnosis of narcolepsy.

Results: Median age was 33.0 years (IQR 25.0-43.0), median Ullanlinna Narcolepsy Scale 19 (IQR 14.0-26.0), 78% reported using narcolepsy pharmacotherapy. Excessive daytime sleepiness (97.2%) and lack of energy were most often present (95.0%) and most often caused a high burden (79.7% and 76.1% respectively). Cognitive symptoms (concentration 93.0%, memory 91.4%) and psychiatric symptoms (mood 76.8%, anxiety/panic 76.4%) were relatively often reported to be present and burdensome. Conversely, sleep paralysis and cataplexy were least often reported as highly bothersome. Females experienced a higher burden for anxiety/panic, memory, and lack of energy.

Conclusions: This study supports the notion of an elaborate narcolepsy symptom spectrum. Each symptom's contribution to the experienced burden varied, but lesser-known symptoms did significantly add to this as well. This emphasizes the need to not only focus treatment on the classical core symptoms of narcolepsy.

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成人嗜睡症的负担：利用个人媒体进行的人口抽样调查。

目的了解大量患者的嗜睡症症状范围和相关负担：我们使用移动应用程序 "嗜睡症监测器 "对 20 种嗜睡症症状的存在和负担进行了轻松评级。我们对 746 名年龄在 18 岁至 75 岁之间、据报告诊断患有嗜睡症的用户进行了基线测量和分析：年龄中位数为 33.0 岁（IQR 25.0-43.0），Ullanlinna 嗜睡症量表中位数为 19（IQR 14.0-26.0），78% 的人报告使用了嗜睡症药物治疗。白天过度嗜睡（97.2%）和乏力（95.0%）是最常见的症状，也是最常造成沉重负担的症状（分别为 79.7% 和 76.1%）。认知症状（集中力 93.0%，记忆力 91.4%）和精神症状（情绪 76.8%，焦虑/恐慌 76.4%）相对较多，并造成较重的负担。相反，睡眠瘫痪和紧张性瘫痪最不经常被报告为高度困扰。女性在焦虑/恐慌、记忆力和乏力方面的负担较重：这项研究证实了嗜睡症症状谱的概念。每种症状对体验负担的影响各不相同，但鲜为人知的症状也会明显加重体验负担。这就强调了治疗的重点不应仅仅放在嗜睡症的经典核心症状上。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Behavioral Sleep Medicine CLINICAL NEUROLOGY-PSYCHIATRY

CiteScore

7.20

自引率

3.20%

发文量

审稿时长

>12 weeks

期刊介绍： Behavioral Sleep Medicine addresses behavioral dimensions of normal and abnormal sleep mechanisms and the prevention, assessment, and treatment of sleep disorders and associated behavioral and emotional problems. Standards for interventions acceptable to this journal are guided by established principles of behavior change. Intending to serve as the intellectual home for the application of behavioral/cognitive science to the study of normal and disordered sleep, the journal paints a broad stroke across the behavioral sleep medicine landscape. Its content includes scholarly investigation of such areas as normal sleep experience, insomnia, the relation of daytime functioning to sleep, parasomnias, circadian rhythm disorders, treatment adherence, pediatrics, and geriatrics. Multidisciplinary approaches are particularly welcome. The journal’ domain encompasses human basic, applied, and clinical outcome research. Behavioral Sleep Medicine also embraces methodological diversity, spanning innovative case studies, quasi-experimentation, randomized trials, epidemiology, and critical reviews.