发作性睡病患者的学术和职业路径：Narcowork 研究。

Academic and professional paths of narcoleptic patients: the Narcowork study.

机构信息

Claude Bernard Lyon 1 University, Lyon, France.

Claude Bernard Lyon 1 University, Lyon, France; Occupational Diseases Unit, Lyon Sud Hospital, Hospices Civils de Lyon, Lyon, France; Claude Bernard Lyon 1 University, IFSTTAR, UMRESTTE, UMR T_9405, F-69373, Lyon, France.

出版信息

Sleep Med. 2020 Jan;65:96-104. doi: 10.1016/j.sleep.2019.07.020. Epub 2019 Aug 2.

DOI:10.1016/j.sleep.2019.07.020

PMID:31739232

Abstract

OBJECTIVE/BACKGROUND: To study educational and professional pathways of narcoleptic patients and examine demographic, disease-related and environmental factors associated with a better academic and professional prognosis.

PATIENTS/METHODS: In sum, 69 narcoleptic patients (51 narcolepsy type 1 and 18 narcolepsy type 2, age 42.5 ± 18.2 years) were enrolled in this pilot monocentric cross-sectional study with a comparison group (80 age- and sex-matched controls) between October 2017 and July 2018 in Lyon Center for Sleep Medicine. They completed questionnaires about their academic and professional trajectories and specific scales of quality of life (EuroQol quality of life scale EQ-5D-3L), depression (beck depression inventory, BDI), sleepiness (Epworth Sleepiness Scale, ESS) and narcoleptic symptoms severity (narcolepsy severity scale, NSS).

RESULTS

No difference in grade repetition or final obtained diploma was observed between patients and controls, but patients evaluated their academic curricula as more difficult (45.5% vs 16.9%, p = 0.0007), complained for more attentional deficits (75% vs 22.1%, p < 0.0001), and had needed more educational reorientation (28.6% vs 9.9%, p = 0.01). Even if no difference was observed in occupational category and professional status, patients expressed significantly less satisfaction about their work. Patients had more signs of depression [OR severe depression = 4.4 (1.6-12.6), p = 0.02] and their quality of life was significantly decreased (67.3 ± 18.4 vs 80.6 ± 13.2, p = 0.0007) as compared to controls. Multivariate analysis showed that a more favorable professional career was associated with a better quality of life.

CONCLUSIONS

Educational and professional pathways do not seem to be significantly impaired in narcoleptic patients, but their experience and quality of life are affected. These findings may allow to reassure patients and should lead to a more comprehensive management of the disease.

CLINICAL TRIAL REGISTRATION

Narcowork, https://clinicaltrials.gov/ct2/show/NCT03173378, N° NCT03173378.

摘要

目的/背景：研究发作性睡病患者的教育和职业途径，并检查与更好的学业和职业预后相关的人口统计学、疾病相关和环境因素。

患者/方法：在 2017 年 10 月至 2018 年 7 月期间，在里昂睡眠医学中心，共纳入了 69 名发作性睡病患者（51 名发作性睡病 1 型和 18 名发作性睡病 2 型，年龄 42.5±18.2 岁）作为单中心病例对照研究的一部分，其中包括一组 80 名年龄和性别匹配的对照组。他们填写了关于学业和职业轨迹的问卷，并填写了特定的生活质量量表（欧洲五维健康量表 EQ-5D-3L）、抑郁量表（贝克抑郁量表，BDI）、嗜睡量表（Epworth 嗜睡量表，ESS）和发作性睡病症状严重程度量表（发作性睡病严重程度量表，NSS）。

结果

患者和对照组之间的年级重复或最终获得的文凭没有差异，但患者认为他们的学业课程更难（45.5%对 16.9%，p=0.0007），抱怨注意力缺陷更多（75%对 22.1%，p<0.0001），需要更多的教育定向（28.6%对 9.9%，p=0.01）。尽管在职业类别和职业地位方面没有差异，但患者对自己的工作表示不满。患者的抑郁症状更为明显[严重抑郁的比值比（OR）为 4.4（1.6-12.6），p=0.02]，生活质量明显下降（67.3±18.4 对 80.6±13.2，p=0.0007）。多变量分析表明，更好的职业前景与更好的生活质量相关。