The Burden of Narcolepsy in Adults: A Population Sampling Study Using Personal Media.
Behav Sleep Med
; 22(2): 179-189, 2024 Mar 03.
Article
en En
| MEDLINE
| ID: mdl-37246794
ABSTRACT
OBJECTIVE:
To obtain insight in the spectrum of narcolepsy symptoms and associated burden in a large cohort of patients.METHODS:
We used the Narcolepsy Monitor, a mobile app, to easily rate the presence and burden of 20 narcolepsy symptoms. Baseline measures were obtained and analyzed from 746 users aged between 18 and 75 years with a reported diagnosis of narcolepsy.RESULTS:
Median age was 33.0 years (IQR 25.0-43.0), median Ullanlinna Narcolepsy Scale 19 (IQR 14.0-26.0), 78% reported using narcolepsy pharmacotherapy. Excessive daytime sleepiness (97.2%) and lack of energy were most often present (95.0%) and most often caused a high burden (79.7% and 76.1% respectively). Cognitive symptoms (concentration 93.0%, memory 91.4%) and psychiatric symptoms (mood 76.8%, anxiety/panic 76.4%) were relatively often reported to be present and burdensome. Conversely, sleep paralysis and cataplexy were least often reported as highly bothersome. Females experienced a higher burden for anxiety/panic, memory, and lack of energy.CONCLUSIONS:
This study supports the notion of an elaborate narcolepsy symptom spectrum. Each symptom's contribution to the experienced burden varied, but lesser-known symptoms did significantly add to this as well. This emphasizes the need to not only focus treatment on the classical core symptoms of narcolepsy.
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Cataplejía
/
Trastornos de Somnolencia Excesiva
/
Narcolepsia
Límite:
Adolescent
/
Adult
/
Aged
/
Female
/
Humans
/
Middle aged
Idioma:
En
Revista:
Behav Sleep Med
Asunto de la revista:
CIENCIAS DO COMPORTAMENTO
/
NEUROLOGIA
/
PSICOFISIOLOGIA
Año:
2024
Tipo del documento:
Article
País de afiliación:
Países Bajos