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I'm a PatientA Unique Burden for Pediatric Patients With Narcolepsy
Children and adolescents with narcolepsy may experience a range of academic and psychosocial problems, including decreased academic performance, social difficulties, depression, anxiety, and attention deficit disorder/learning disabilities.1-3
Psychosocial Impairment
Children with narcolepsy are at risk for emotional problems, including depression, anxiety, and low self-esteem.4 One study of 88 patients, 5 to 17.5 years of age, showed that 25% of children with narcolepsy have depressive symptoms.5
Children and adolescents with narcolepsy can express embarrassment and loss of self-worth because of their symptoms.6 They:
- Are often mislabeled as “lazy” and “unmotivated” by teachers and caregivers6,7
- Can be socially withdrawn and feel isolated from family members and peers6
- May believe that others do not understand or tolerate their symptoms6
- Are often embarrassed when symptoms occur in a social setting, such as in class6
- May become introverted,8 or avoid social situations that may trigger cataplexy or draw attention to their excessive daytime sleepiness6
- May experience high levels of anxiety from frightening hallucinations, unexpected sleep, and cataplectic falls9
A brief psychiatric interview of 40 children (age ≥7 y) with narcolepsy with cataplexy revealed7:
90%
desire to hide their illness from peers
90%
are ashamed of their symptoms
83%
consider narcolepsy a significant handicap to acceptance in school, athletics, and social activities
80%
report feelings of helplessness with their symptoms
80%
feel depressed by their inability to be the same as their peers despite not having any physical signs
Decreased Academic Performance
Some children and adolescents with narcolepsy have been shown to have academic difficulties, fail/repeat a grade, and have absenteeism.10 In addition, narcolepsy with cataplexy is a risk factor for the development of cognitive problems that may impact learning ability and academic achievement in school-aged children.4,11
Impact on Caregivers
Caregivers are often concerned about their child’s performance and emotional well-being.12 They may be frustrated with their child’s behaviors related to excessive daytime sleepiness and may seek support from healthcare providers or school systems.6,7 In a brief interview, caregivers of pediatric patients with narcolepsy reported7:
- Maski K, Owens JA. Insomnia, parasomnias, and narcolepsy in children: clinical features, diagnosis, and management. Lancet Neurol. 2016;15(11):1170-1181.
- Maski K, Steinhart E, Williams D, et al. Listening to the patient voice in narcolepsy: diagnostic delay, disease burden, and treatment efficacy. J Clin Sleep Med. 2017;13(3):419-425.
- Aran A, Einen M, Lin L, Plazzi G, Nishino S, Mignot E. Clinical and therapeutic aspects of childhood narcolepsy-cataplexy: a retrospective study of 51 children. Sleep. 2010;33(11):1457-1464.
- Blackwell JE, Alammar HA, Weighall AR, Kellar I, Nash HM. A systematic review of cognitive function and psychosocial well-being in school-age children with narcolepsy. Sleep Med Rev. 2017;34:82-93.
- Inocente CO, Gustin MP, Lavault S, et al. Depressive feelings in children with narcolepsy. Sleep Med. 2014;15(3):309-314.
- Broughton WA, Broughton RJ. Psychosocial impact of narcolepsy. Sleep. 1994;17(8 suppl):S45-S49.
- Guilleminault C, Pelayo R. Narcolepsy in prepubertal children. Ann Neurol. 1998;43(1):135-142.
- Nevsimalova S. Narcolepsy in childhood. Sleep Med Rev. 2009;13(2):169-180.
- Postiglione E, Antelmi E, Pizza F, Lecendreux M, Dauvilliers Y, Plazzi G. The clinical spectrum of childhood narcolepsy. Sleep Med Rev. 2018;38:70-85.
- Inocente CO, Gustin M-P, Lavault S, et al. Quality of life in children with narcolepsy. CNS Neurosci Ther. 2014;20(8):763-771.
- Posar A, Pizza F, Parmeggiani A, Plazzi G. Neuropsychological findings in childhood narcolepsy. J Child Neurol. 2014;29(10):1370-1376.
- Stores G, Montgomery P, Wiggs L. The psychosocial problems of children with narcolepsy and those with excessive daytime sleepiness of uncertain origin. Pediatrics. 2006;118(4):e1116-e1123.