Abstract Introduction Narcolepsy is a chronic neurological disorder associated with significant impairment in daily functioning and quality of life. Despite established diagnostic criteria, the condition remains frequently underrecognized, with reported delays often exceeding 8–11 years. Patients commonly experience prolonged intervals between symptom onset, initial clinical evaluation, and completion of polysomnography (PSG) and multiple sleep latency testing (MSLT). Symptoms are frequently attributed to alternative conditions such as depression, anxiety, ADHD, insomnia, or obstructive sleep apnea, contributing to further delay. Untimely diagnosis is linked to increased psychiatric burden, inappropriate treatments, and reduced quality of life. Although guidelines recommend follow-up every 6–12 months and regular assessment of daytime sleepiness, adherence varies widely. Rural populations may face additional barriers to specialty care, diagnostic testing, and medication access, yet these challenges are not well characterized. We aimed to evaluate diagnostic pathways, follow-up patterns, and treatment practices for narcolepsy within a large rural health system. Methods We conducted a retrospective cohort study within the Bassett Healthcare Network, a geographically expansive rural health system in upstate New York. Using the electronic medical record (EMR), we identified all patients with a documented narcolepsy diagnosis from January 2016 to December 2025. Eligible patients had a diagnosis confirmed by a sleep specialist or neurologist and at least one clinical encounter. Patients with reclassified diagnoses or insufficient documentation were excluded. Extracted variables included demographics; narcolepsy type; diagnostic intervals (symptom onset → diagnosis; first clinician visit → diagnosis); completion of PSG and MSLT; prior misdiagnoses; follow-up frequency; treatment initiation; pharmacotherapies used; polypharmacy; and Epworth Sleepiness Scale (ESS) scores at baseline and follow-up. Primary outcomes included diagnostic timeliness, adherence to ICSD-3 testing criteria, annual follow-up rates, and treatment patterns. Results Data abstraction and analysis are ongoing. Planned outcomes include distributions of narcolepsy subtypes, diagnostic delays, frequency of misdiagnoses, adherence to diagnostic testing, treatment selection trends, follow-up rates, and changes in ESS scores, including in oxybate-treated patients. Conclusion This study will provide the first detailed evaluation of diagnostic accuracy, follow-up patterns, and treatment practices for narcolepsy in a rural U.S. health system. Findings will inform quality-improvement strategies to reduce diagnostic delay and optimize care delivery in resource-limited settings. Support (if any) No.
Saniah Khan (2026) studied this question.