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

Abstract

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.

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

“…This was the case even when the diagnosis had been established in childhood and despite specific support at school, keeping in mind that such support may only be offered in the most difficult situations. 37 Comorbidities are likely to contribute to the disability, such as attentional disorders reported by almost 90% of patients in our study, or other psycho-behavioral symptoms. 8, 38 Importantly, it is possible that the achievement of academic “success” in terms of graduation may be at the expense of other areas associated with well-being and quality of life such as after-school activities or friendships.…”