Logo image
Back
Incidence of pediatric narcolepsy diagnosis and management: evidence from claims data
Journal article   Peer reviewed

Incidence of pediatric narcolepsy diagnosis and management: evidence from claims data

Si Hao Tang, Jungwon Min, Xuemei Zhang, Eberechukwu Uwah, Heather M Griffis, Christopher M Cielo, Alexander G Fiks, Jodi A Mindell, Ignacio E Tapia and Ariel A Williamson
Journal of clinical sleep medicine, v 20(7), pp 1141-1151
01 Jul 2024
DOI: https://doi.org/10.5664/jcsm.11104
PMID: 38450539

Abstract

Adolescent Child Female Healthcare Disparities - statistics & numerical data Humans Incidence Insurance Claim Review - statistics & numerical data Male Medicaid - statistics & numerical data Narcolepsy - diagnosis Narcolepsy - epidemiology Narcolepsy - therapy Polysomnography - statistics & numerical data United States - epidemiology
The purpose of this study was to characterize the incidence of pediatric narcolepsy diagnosis, subsequent care, and potential sociodemographic disparities in a large US claims database. Merative MarketScan insurance claims (n = 12,394,902) were used to identify youth (6-17 years of age) newly diagnosed with narcolepsy ( codes). Narcolepsy diagnosis and care 1 year postdiagnosis included polysomnography with Multiple Sleep Latency Test, pharmacological care, and clinical visits. Potential disparities were examined by insurance coverage and child race and ethnicity (Medicaid-insured only). The incidence of narcolepsy diagnosis was 10:100,000, primarily type 2 (69.9%). Most diagnoses occurred in adolescents with no sex differences, but higher rates in Black vs White youth with Medicaid. Two thirds had a prior sleep disorder diagnosis and 21-36% had other co-occurring diagnoses. Only half (46.6%) had polysomnography with Multiple Sleep Latency Test (± 1 year postdiagnosis). Specialty care (18.9% pulmonary, 26.9% neurology) and behavioral health visits were rare (34.4%), although half were prescribed stimulant medications (51.0%). Medicaid-insured were 86% less likely than commercially insured youth to have any clinical care and 33% less likely to have polysomnography with Multiple Sleep Latency Test. Narcolepsy diagnoses occurred in 0.01% of youth, primarily during adolescence, and at higher rates for Black vs White children with Medicaid. Only half overall had evidence of a diagnostically required polysomnography with Multiple Sleep Latency Test, underscoring potential misdiagnosis. Many patients had co-occurring conditions, but specialty and behavioral health care were limited. Results suggest misdiagnosis, underdiagnosis, and limited narcolepsy treatment, as well as possible disparities. Results highlight the need to identify determinants of evidence-based pediatric narcolepsy diagnosis and management. Tang SH, Min J, Zhang X, et al. Incidence of pediatric narcolepsy diagnosis and management: evidence from claims data. . 2024;20(7):1141-1151.

Metrics

1 Record Views
4 citations in Web of Science

Details

Logo image