Patterns of healthcare use in people with narcolepsy: a population-based cohort study in England

People with narcolepsy experience delays in diagnosis and inconsistent post-diagnosis care, but the pattern and scale of their healthcare use is poorly described. In this population-based cohort study, we used primary care and linked hospital activity data to compare healthcare use in people with narcolepsy (n=2,772) and a matched comparison group in England (n=13,860). Narcolepsy was defined by a first coded record in primary care or admitted care data between 02 January 1998 and 31 December 2019; this date was the index date for both groups. People with narcolepsy had approximately double the rate of healthcare use in the period from five years before to five years after the index date. Annually, this corresponded on average to an additional 1.9 (95% confidence interval (CI) 1.8-2.0) outpatient events, 0.36 (95% CI 0.30-0.42) admitted patient care events, 0.25 (95% CI 0.22-0.29) Accident & Emergency events and 4.3 (95% CI 3.9-4.7) primary care events per person. Service use in all settings peaked at index and remained elevated for at least 15 years either side. The elevated rates of possible-sleep related outpatient events (respiratory, neurology paediatric, and ear nose & throat) peaked in the year including and after the index date, at 1.50 (95% CI 1.41-1.59); before declining to <0.5 visits per person-year after five years. Our findings of sustained elevated use of healthcare by people with narcolepsy across NHS settings may reflect diagnostic delay, comorbidities, and ongoing narcolepsy-related healthcare needs being met largely outside specialist sleep care, highlighting opportunities to improve healthcare services.