Academic and socio-professional trajectories in narcolepsy type 1: the NARCOSCOL-NARCOVITAE multicentric study
Bibliographic record
Abstract
Abstract Background and objectives Narcolepsy type 1 (NT1) is a chronic, disabling neurological disease. Sleep-related symptoms and comorbidities such as psycho-cognitive disturbances, and a frequent childhood onset of the disease may negatively impact patients’ career. We conducted a multicentric comparative cross-sectional study in Reference/Competence Centers for Narcolepsy in France to investigate the educational and occupational paths of patients with NT1. Methods Between February 2020 and 2023, adult patients with NT1 regularly followed-up in the participating centers were invited to complete online questionnaires including the Epworth sleepiness Scale, Narcolepsy Severity Scale, Beck Depression Inventory II, Siegrist questionnaire, Adult Self-Report and Adult Behavior Checklist, and a customized questionnaire on academic and professional trajectories. Controls were selected from within the patients’ close circle. Comparisons were adjusted for sex and age, and the determinants of patients’ professional prognosis were quantified by a composite score including professional-related outcomes. Results Questionnaires were filled by 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 grade repetition and graduation level distribution, but patients reported more interruptions in their scolarity which was considered difficult, with more absenteeism and lateness. No difference was observed for employment rate (69.5% vs 77.0%) and socio-professional category distribution, 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). Almost half of the patients benefited from an official disability recognition and 10.2% received invalidity benefits. 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). Residual sleep-related symptoms were not significant predictors. Discussion Most patients with NT1 manage to achieve their careers goals, but at the cost of an effort/reward imbalance. Early diagnosis during childhood might allow a better adjustment to the disease. The critical role of co-morbidities in professional trajectories suggests that, in treated patients, psycho-cognitive disturbances have greater impact on daily functionning than sleep-related symptoms, and stresses the need to consider psycho-cognitivo-social dimensions in patient care.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.001 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.001 | 0.000 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.001 | 0.000 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".