Central nervous system disorders of hypersomnolence typically start in early adolescence yet diagnostic delays and misdiagnosis are common, resulting in years of untreated symptoms, exposure to potentially harmful and unnecessary treatments, and an increase in co-morbid depression.
Investigators at Boston Children’s Hospital developed a Pediatric Hypersomnia Survey (PHS) and performed a validation study across multiple sites in the United
States. The study is still under journal review. The PHS items were developed based on data collected from focus groups of patients, parents/guardians/teachers, and school nurses.
In the validation phase, a total of 331 children aged 8-18 years participated (patients with narcolepsy type 1 (n=64), narcolepsy type 2 (n=34), idiopathic hypersomnia (n=36), and other sleep disorders (n=97), and healthy controls (n=100).
The PHS showed significant correlations with objective multiple sleep latency test measures as well as existing validated sleepiness surveys. The PHS showed excellent accuracy in identifying pediatric patients with IH and narcolepsy compared to healthy controls and patients with other sleep disorders. Implemented in clinical practice, the PHS could potentially decrease diagnostic delays and time to treatment for children with narcolepsy and idiopathic hypersomnia.
References:
- Maski, K., Worhach, J., Steinhart, E., Boduch, M., Morse, A., Strunc, M., Scammell, T.E., Owens, J., Jesteadt, L.; Crisp, C., Williams, D.N., Sideridis, G. (in-review). Development and Validation of the Pediatric Hypersomnia Survey (PHS).
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Kiran Maski, MD, MPH is an Assistant Professor at Harvard Medical School and child neurologist and sleep medicine specialist at Boston Children’s Hospital. Dr. Maski’s clinical work and research is focused on pediatric central nervous system hypersomnia (CSN) disorders.
