Medical specialty visits and diagnoses received by Saudi patients prior to a diagnosis of narcolepsy

Purpose: Narcolepsy is an uncommon neurological disorder characterized by excessive daytime sleepiness (EDS) and multiple other symptoms. Due to the under-recognition of narcolepsy symptoms, patients are often misdiagnosed. This study aimed to assess the types of specialties visited and the diagnoses received by Saudi patients prior to their narcolepsy diagnosis.

Methods: The study included 55 consecutive patients with type-1 and type-2 narcolepsy who attended the narcolepsy clinic between August 2017 and December 2017. Narcolepsy was diagnosed according to the International Classification of Sleep Disorders-third edition criteria. We evaluated sociodemographic data, the specialties visited, and diagnoses and treatments received prior to visiting a sleep specialist.

Results: The mean diagnostic delay was 9.1 ± 8.4 years (1-43 years). Multiple linear regression analysis identified early onset as the only predictor of a delayed diagnosis (β coefficient = - 0.262, p = 0.03). EDS was the main symptom that prompted patients to seek medical consultation, and only one patient had been (1.8%) referred with the diagnosis of narcolepsy. In the study group, 82% of the patients were misdiagnosed with a mental or neurological disorder or were thought to be afflicted by "envy," "evil eye," or "black magic" before receiving a correct diagnosis. No significant differences were detected between patients with narcolepsy type-1 and narcolepsy type-2.

Conclusions: Delays in diagnosing narcolepsy remain a major problem for Saudi patients with this disorder. We found that Saudi patients with narcolepsy had visited several medical specialists and faith healers and were misdiagnosed prior to visiting a sleep specialist.