Peter-Derex Laure, Fort Emmanuel, Putois Benjamin, Martel Nora, Ricordeau François, Bastuji Hélène, Arnulf Isabelle, Barateau Lucie, Bourgin Patrice, Dauvilliers Yves, Debs Rachel, Dodet Pauline, Dudoignon Benjamin, Franco Patricia, Hartley Sarah, Lambert Isabelle, Lecendreux Michel, Leclair-Visonneau Laurene, Léger Damien, Lemesle-Martin Martine, Léotard Antoine, Leu-Semenescu Smaranda, Limousin Nadège, Lopez Régis, Meslier Nicole, Micoulaud-Franchi Jean-Arthur, Charley-Mocana Christelle, d'Ortho Marie-Pia, Philip Pierre, Ruppert Elisabeth, de La Tullaye Sylvie, Brigandet Manon, Margier Jennnifer, Rolland Benjamin, Charbotel Barbara, Mazza Stéphanie
Centre for Sleep Medicine and Respiratory Diseases, National Reference Centre for Orphan Diseases, Narcolepsy-Rare Hypersomnias, Croix-Rousse Hospital, Hospices Civils de Lyon, Lyon 1 University, Lyon, France.
Lyon Neuroscience Research Centre, Institut National de la Santé et de la Recherche Médicale Unité 1028, Centre National de la Recherche Scientifique Unité Mixte de Recherche 5292, Lyon, France.
J Clin Sleep Med. 2025 Jun 1;21(6):983-997. doi: 10.5664/jcsm.11598.
This multicenter comparative cross-sectional study aimed to describe educational and occupational pathways, quantify effort/reward imbalance at work, and identify factors associated with professional prognosis in patients with narcolepsy type 1.
Adult patients with narcolepsy type 1 and controls answered online questionnaires (Epworth Sleepiness Scale, Beck Depression Inventory II, Siegrist questionnaire, adult self-report, and a questionnaire on academic and professional trajectories) and were compared using sex- and age-adjusted logistic regressions. Clinical, demographic, and psycho-social factors associated with patients' professional prognosis, as assessed by a composite score based on occupational-related outcomes, were explored with a generalized linear model.
We included 235 patients (63.8% females, 36.4 ± 14.7 years, 86.5% treated, 66.4% with childhood onset) and 166 controls (69.9% females, 40.3 ± 14.4 years). No difference was observed between patients and controls for graduation, but patients reported more interruptions, absenteeism, and lateness during schooling. No difference was observed for employment rate (69.5% vs 77.0%), but income was lower in patients who reported more unwanted changes in position and part-time work, with increased effort-reward imbalance (odds ratio = 2.28 95% confidence interval [1.20-4.33], = .01). Impaired professional prognosis was associated with depression ( < .0001) and attention disorders ( = .03), while being a person with narcolepsy during schooling was a protective factor ( = .02).
Most patients with narcolepsy type 1 manage to achieve their careers goals, but at the cost of an effort/reward imbalance. Early diagnosis might allow a better adjustment to the disease. The strong impact of psycho-cognitive comorbidities on professional outcomes stresses the need to consider psycho-cognitive-social dimensions in patient care.
Registry: ClinicalTrials.gov; Name: NARCOSCOL-NARCOVITAE; URL: https://clinicaltrials.gov/study/NCT03765892; Identifier: NCT03765892.
Peter-Derex L, Fort E, Putois B, et al. Effort/reward imbalance and comorbidities burden in academic and professional careers of patients with narcolepsy type 1. . 2025;21(6):983-997.
这项多中心比较横断面研究旨在描述发作性睡病1型患者的教育和职业路径，量化工作中的努力/回报失衡，并确定与职业预后相关的因素。
发作性睡病1型成年患者和对照组回答在线问卷（爱泼华嗜睡量表、贝克抑郁量表第二版、西格里斯特问卷、成人自我报告以及一份关于学业和职业轨迹的问卷），并使用性别和年龄调整的逻辑回归进行比较。通过基于职业相关结果的综合评分评估与患者职业预后相关的临床、人口统计学和心理社会因素，并使用广义线性模型进行探索。
我们纳入了235名患者（63.8%为女性，年龄36.4±14.7岁，86.5%接受治疗，66.4%儿童期起病）和166名对照组（69.9%为女性，年龄40.3±14.4岁）。患者和对照组在毕业方面未观察到差异，但患者报告在上学期间有更多的学业中断、缺勤和迟到情况。就业率方面未观察到差异（69.5%对77.0%），但报告职位有更多不必要变动和从事兼职工作的患者收入较低，努力/回报失衡增加（比值比=2.28，95%置信区间[1.20 - 4.33]，P = 0.01）。职业预后受损与抑郁（P < 0.0001）和注意力障碍（P = 0.03）相关，而上学期间患有发作性睡病是一个保护因素（P = 0.02）。
大多数发作性睡病1型患者设法实现了他们的职业目标，但付出了努力/回报失衡的代价。早期诊断可能有助于更好地适应疾病。心理认知合并症对职业结果的强烈影响强调了在患者护理中考虑心理认知社会维度的必要性。
注册机构：ClinicalTrials.gov；名称：NARCOSCOL - NARCOVITAE；网址：https://clinicaltrials.gov/study/NCT03765892；标识符：NCT03765892。
Peter - Derex L, Fort E, Putois B等。发作性睡病1型患者学业和职业生涯中的努力/回报失衡及合并症负担。……2025；21(6):983 - 997。
