Long-term health and socioeconomic consequences of childhood and adolescent-onset of narcolepsy

Jennum, Poul; Ibsen, Rikke; Kjellberg, Jakob

doi:10.1016/j.sleep.2019.10.013

Cited by 12 publications

(10 citation statements)

References 30 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Their income was lower, and the cost due to sick leave days was high for patients as previously reported. 4,[20][21][22]26 This lack of professional recognition and valuing resulted in an effortreward imbalance, as patients living with NT1 reported investing most of their energy in work, possibly to the detriment of their personal lives. Thus, as highlighted by previous studies, patients were less likely to be in a couple, had fewer children, and expressed more difficulty in managing daily activities and engaging in leisure activities.…”

Section: Discussionmentioning

confidence: 99%

“…23,28,29 Last, studies are unanimous on the economic impact of the disease, in terms of both direct and indirect costs, and in particular the reduction in patients' income. 4,[20][21][22]26 Recently, we reported the results of the Narcowork single-center study, which included adult patients with NT1 and NT2. 19 Although we found no difference between patients and controls with respect to grade repetition, highest graduation, socio-professional category (SPC) and employment status, both academic and occupational paths were experienced as difficult by patients.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

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

Peter-Derex,

Fort,

Putois

et al. 2024

Preprint

View full text Add to dashboard Cite

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.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Peter-Derex,

Fort,

Putois

et al. 2024

Preprint

View full text Add to dashboard Cite

show abstract

“…Adults with NT1 retrospectively evaluated their academic careers as more complex [ 13 , 15 ]. Moreover, prospective studies found that individuals with child- or adolescent-onset NT1 had lower educational levels, lower grading, and lower employment rate and income than healthy controls [ 16 ].…”

Section: Introductionmentioning

confidence: 99%

School Problems and School Support for Children with Narcolepsy: Parent, Teacher, and Child Reports

Janssens

Amesz

Nuvelstijn

et al. 2023

IJERPH

View full text Add to dashboard Cite

Objective: To assess problems faced by children with type 1 narcolepsy (NT1) at school and obtain insight into potential interventions for these problems. Methods: We recruited children and adolescents with NT1 from three Dutch sleep-wake centers. Children, parents, and teachers completed questionnaires about school functioning, interventions in the classroom, global functioning (DISABKIDS), and depressive symptoms (CDI). Results: Eighteen children (7–12 years) and thirty-seven adolescents (13–19 years) with NT1 were recruited. Teachers’ most frequently reported school problems were concentration problems and fatigue (reported by about 60% in both children and adolescents). The most common arrangements at school were, for children, discussing school excursions (68%) and taking a nap at school (50%) and, for adolescents, a place to nap at school (75%) and discussing school excursions (71%). Regular naps at home on the weekend (children 71% and adolescents 73%) were more common than regular naps at school (children 24% and adolescents 59%). Only a minority of individuals used other interventions. School support by specialized school workers was associated with significantly more classroom interventions (3.5 versus 1.0 in children and 5.2 versus 4.1 in adolescents) and napping at school, but not with better global functioning, lower depressive symptom levels, or napping during the weekends. Conclusions: Children with NT1 have various problems at school, even after medical treatment. Interventions to help children with NT1 within the classroom do not seem to be fully implemented. School support was associated with the higher implementation of these interventions. Longitudinal studies are warranted to examine how interventions can be better implemented within the school.

show abstract

“…The diversity of complications causing death in meningitis suggests that determining the clinical cause of death is essential to the evaluation of novel treatment strategies ( 5 ). Meningitis has also a significant influence on mortality, morbidity, education, and income ( 6 ).…”

Section: Introductionmentioning

confidence: 99%

The cost of suspected and confirmed bacterial meningitis cases treated at Jimma University Medical Center, Ethiopia

Chala

Lemma

Godana

et al. 2022

Ethiop J Health Sci

View full text Add to dashboard Cite

BACKGROUND: Infections of the central nervous system (CNS) such as meningitis or encephalitis can be caused by myriad of microorganisms and may be life-threatening. In Ethiopia, it is an important cause of premature death and disability, being the 9th most common cause of years of life lost and loss of disability adjusted life years. The objective of this study was to estimate the cost of suspected and confirmed bacterial meningitis among inpatient managed patients at JUMC.METHODS: A facility-based cross-sectional study was conducted from July 28 to September 12, 2018. A semi-structured questionnaire was used in this study. Checklists were used to collect the types of laboratory tests performed and prescribed medications. This cost of illness study was conducted from the patient perspectives. We employed a micro-costing bottom-up approach to estimate the direct cost of meningitis. The humancapital approach was used for estimating wages lost.RESULT: Among total patients admitted and treated in JUMC, higher proportions (69.8%) were suspected bacterial meningitis but have been treated as confirmed cases. Total median costs for both suspected and confirmed bacterial meningitis patients were estimated to be ETB 98,812.32 (US $ 3,593.2; IQR 1,303.0 to 5,734.0). Total median direct cost was ETB 79,248.02 (US $2,881.75; IQR 890.7 to 3,576.7). Moreover, 45.3% of the patients reported that they were either admitted or given medication at JUMC or nearby health facility before their current admissions.CONCLUSION: These findings indicate that most cases of bacterial meningitis were treated only empirically, and the cost of the treatment was high, especially for resource-limited countries like Ethiopia. To minimize the burden of meningitis and avoid unnecessary hospitalizations, the availability of diagnostic techniques is vitally important.

show abstract

Long-term health and socioeconomic consequences of childhood and adolescent-onset of narcolepsy

Cited by 12 publications

References 30 publications

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

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

School Problems and School Support for Children with Narcolepsy: Parent, Teacher, and Child Reports

The cost of suspected and confirmed bacterial meningitis cases treated at Jimma University Medical Center, Ethiopia

Contact Info

Product

Resources

About