Laure Peter-Derex, Emmanuel Fort, Benjamin Putois, Nora Martel, François Ricordeau, Hélène Bastuji, Isabelle Arnulf, Lucie Barateau, Patrice Bourgin, Yves Dauvilliers, Rachel Debs, Pauline Dodet, Benjamin Dudoignon, Patricia Franco, Sarah Hartley, Isabelle Lambert, Michel Lecendreux, Laurene Leclair-Visonneau, Damien Léger, Martine Lemesle-Martin, Antoine Léotard, Smaranda Leu-Semenescu, Nadège Limousin, Régis Lopez, Nicole Meslier, Jean-Arthur Micoulaud-Franchi, Christelle Charley-Mocana, Marie-Pia d'Ortho, Pierre Philip, Elisabeth Ruppert, Sylvie de La Tullaye, Manon Brigandet, Jennnifer Margier, Benjamin Rolland, Barbara Charbotel, Stéphanie Mazza
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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.</p><p><strong>Results: </strong>We included 235 patients (63.8% women, 36.4±14.7 years, 86.5% treated, 66.4% with childhood onset) and 166 controls (69.9% women, 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 (OR=2.28 95%CI[1.20-4.33], p=0.01). 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引用次数: 0
摘要
研究目的：本多中心比较横断面研究旨在描述教育和职业途径，量化工作中的努力/回报不平衡，并确定与1型发作性睡病（NT1）患者职业预后相关的因素。方法：成年NT1患者和对照组分别填写在线问卷（Epworth嗜睡量表、Beck抑郁量表II、Siegrist问卷、成人自我报告以及学术和职业轨迹问卷），并采用经性别和年龄调整的logistic回归进行比较。临床、人口学和心理社会因素与患者职业预后相关，通过基于职业相关结果的综合评分进行评估，并采用广义线性模型进行探讨。结果：我们纳入235例患者（63.8%女性，36.4±14.7岁，86.5%治疗过，66.4%儿童期发病）和166例对照组（69.9%女性，40.3±14.4岁）。在毕业时，患者和对照组之间没有观察到差异，但患者在上学期间报告了更多的中断、缺勤和迟到。就业率无差异（69.5% vs 77.0%），但报告更多不想要的职位变化和兼职的患者收入较低，努力-回报不平衡增加（OR=2.28 95%CI[1.20-4.33], p=0.01）。职业预后受损与抑郁相关(p结论：大多数NT1患者设法实现他们的职业目标，但代价是努力/回报不平衡。早期诊断可能有助于更好地适应这种疾病。心理-认知合并症对专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。临床试验注册：注册：ClinicalTrials.gov；标识符:NCT03765892。
Effort/reward imbalance and comorbidities burden in academic and professional careers of patients with narcolepsy type 1.
Study objectives: This multi-center 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 (NT1).
Methods: Adult patients with NT1 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.
Results: We included 235 patients (63.8% women, 36.4±14.7 years, 86.5% treated, 66.4% with childhood onset) and 166 controls (69.9% women, 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 (OR=2.28 95%CI[1.20-4.33], p=0.01). Impaired professional prognosis was associated with depression (p<0.0001) and attention disorders (p=0.03), while being narcoleptic during schooling was a protective factor (p=0.02).
Conclusions: Most patients with NT1 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-cognitivo-social dimensions in patient care.
期刊介绍：
Journal of Clinical Sleep Medicine focuses on clinical sleep medicine. Its emphasis is publication of papers with direct applicability and/or relevance to the clinical practice of sleep medicine. This includes clinical trials, clinical reviews, clinical commentary and debate, medical economic/practice perspectives, case series and novel/interesting case reports. In addition, the journal will publish proceedings from conferences, workshops and symposia sponsored by the American Academy of Sleep Medicine or other organizations related to improving the practice of sleep medicine.
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