Resilience and its correlates in patients with narcolepsy type 1

D’Alterio, Alessandra; Menchetti, Marco; Zenesini, Corrado; Rossetti, A.C.; Vignatelli, Luca; Franceschini, Christian; Varallo, Giorgia; Pizza, Fabio; Plazzi, Giuseppe; Ingravallo, Francesca

doi:10.5664/jcsm.10418

Cited by 6 publications

(3 citation statements)

References 51 publications

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“…The complexity of this disorder suggests the need to investigate the impact of narcolepsy type 1 on work and daily activities, and the association between impairment in these domains and measures of both excessive daytime sleepiness and the most common narcolepsy type 1 comorbidities, such as overweight, depression, and anxiety. This approach is in line with a bio-psycho-social perspective of narcolepsy that is increasingly being requested especially by, and for, younger patients (Graef et al, 2020;Ingram et al, 2021;Xiao et al, 2022), and concurs with increasing evidence that narcolepsy symptoms are not the only determinants that lead to impairment experienced by people with narcolepsy type 1 (D'Alterio et al, 2023;Maski et al, 2017).…”

Section: Introductionsupporting

confidence: 78%

“…Patients with a definitive diagnosis of narcolepsy type 1, according to the International Classification of Sleep Disorders‐3 (American Academy of Sleep Medicine, 2014), and individuals without symptoms of sleep disorders (comparison group or controls) aged 18+ were invited to participate in the “Psychosocial Impact of Narcolepsy” study (D'Alterio et al, 2023). The study aimed to describe the psychosocial profile of patients with narcolepsy and that of sex‐ and age‐matched people without sleep disorders through validated questionnaires, investigating the correlation between clinical features and social outcomes.…”

Section: Methodsmentioning

confidence: 99%

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Work productivity and activity impairment in patients with narcolepsy type 1

Bassi,

Biscarini,

Zenesini

et al. 2023

Journal of Sleep Research

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SummaryThe aim of this study was to assess work productivity and activity impairments and to explore their association with excessive daytime sleepiness, body mass index (BMI), depression, and anxiety in patients with narcolepsy type 1. We carried out a cross‐sectional study in which patients with narcolepsy type 1 and matched controls for sex, age, and education were assessed for occupational features, EDS (Epworth Sleepiness Scale), BMI, depression (Beck Depression Inventory), anxiety (State–Trait Anxiety Inventory), and Work Productivity and Activity Impairment (WPAI). Different statistical approaches were used to investigate differences between groups and correlations between WPAI scores and clinical features. The 127 patients with narcolepsy type 1 (mean age 38.2 ± 15.5, 91.3% taking drugs for narcolepsy) and 131 controls (mean age of 37.4 ± 14.3) included did not differ in terms of occupational features, except for hours worked/week (29.9 in patients vs. 34.9 in controls) and officially recognised disability (30.7% vs. 5.3%). Impairment in all WPAI scores was approximately three times greater in patients. Narcolepsy was associated with work time missed in 27.4% of patients, while 93.2% to 95.5% of them had some impairment while working or during daily activities (vs. 37.5–46.8% of controls). Correlations with WPAI scores were found for excessive daytime sleepiness only in patients, and for both depression and anxiety in patients and controls, with a stronger correlation for activity impairment in patients. These results suggest that, despite treatment, narcolepsy type 1 was associated with extensive impairment especially regarding job effectiveness and daily activities. Future studies should investigate risk factors and effects of interventions on these outcomes.

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Section: Introductionsupporting

confidence: 78%

Section: Methodsmentioning

confidence: 99%

Work productivity and activity impairment in patients with narcolepsy type 1

Bassi,

Biscarini,

Zenesini

et al. 2023

Journal of Sleep Research

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“…in terms of coping strategies or in career choices), and may contribute to resilience, which is negatively correlated with depression in patients with NT1. 18, 45, 46 The diagnosis delay was not a determining factor, possibly as many factors, differentially influencing the prognosis, are associated with a short delay; younger age at onset, higher symptom severity (especially cataplexy), year of the diagnosis, and social environment associated with inequities in specialized medical care access. 47, 48 Medication was not a significant prognosis factor as already reported for quality of life, possibly as most patients were treated.…”

Section: Discussionmentioning

confidence: 99%

Academic and socio-professional trajectories in narcolepsy type 1: the NARCOSCOL-NARCOVITAE multicentric study

Peter-Derex,

Fort,

Putois

et al. 2024

Preprint

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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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