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

STUDY OBJECTIVES: To characterize the incidence of pediatric narcolepsy diagnosis, subsequent care, and potential sociodemographic disparities in a large US claims database.

METHODS: Merative MarketScan insurance claims (n=12,394,902) were used to identify youth (6-17 years) newly diagnosed with narcolepsy (ICD-10 codes). Narcolepsy diagnosis and care 1-year post-diagnosis included polysomnography (PSG) with Multiple Sleep Latency Test (MSLT), pharmacological care, and clinical visits. Potential disparities were examined by insurance coverage and child race and ethnicity (Medicaid-insured only).

RESULTS: 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 versus 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 a PSG with MSLT (± 1-year post-diagnosis). 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 a PSG with MSLT.

CONCLUSIONS: Narcolepsy diagnoses occurred in 0.01% of youth, primarily during adolescence, and at higher rates for Black versus White children with Medicaid. Only half had evidence of a diagnostically required PSG with MSLT, 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 insurance-related disparities. Results highlight the need to identify determinants of evidence-based pediatric narcolepsy diagnosis and management.