Study provides insight into impact of narcolepsy treatment and healthcare utilization in Sweden

Pharmacological treatment trends and healthcare utilization rates were investigated in an observational study of Swedish patients with narcolepsy.

Narcolepsy, a neurological disorder affecting REM sleep, is a complex disease associated with numerous comorbidities that can affect the quality of life of patients and have socioeconomic consequences. A recent study published in Acta Neurologica Scandinavica evaluated the pharmacological treatments and healthcare utilization of patients with narcolepsy in Sweden, creating a framework for future analyzes and providing information on trends in healthcare costs associated with narcolepsy.

Narcolepsy is characterized by symptoms such as daytime sleepiness, disturbed nighttime sleep with nightmares, hypnagogic hallucinations, sleep paralysis, and cataplexy – a partial or complete loss of muscle tone that is often brought on by strong emotion. There are 2 types of narcolepsy. Type 1 is caused by orexin deficiency and includes cataplexy, while type 2 is more common and does not include cataplexy. Narcolepsy is also associated with comorbidities such as obesity, high cholesterol, glucose intolerance, psychiatric disorders, digestive problems, heart and upper respiratory problems, etc.

Pharmaceutical treatment for narcolepsy has advanced in recent years, but treatment was previously symptomatic or limited to drugs to alleviate daytime sleepiness or cataplexy, or both. Combination treatments are common, the authors noted. “It is important to emphasize, however, that the boundaries between specific effects are unclear. When a patient receives effective treatment for daytime sleepiness, it may also reduce the tendency to develop cataplexy,” they wrote.

A stimulant to relieve daytime sleepiness combined with an antidepressant to fight cataplexy is a common example. Sodium oxybate, a drug that relieves daytime sleepiness, cataplexy and nighttime sleep disturbances, has serious side effects ranging from breathing problems to depression and is not reimbursed by the state in Sweden. The study authors also aimed to compare healthcare utilization between patients receiving standard therapy and those taking sodium oxybate.

The study included 2508 patients diagnosed and treated for narcolepsy. Data from the Swedish National Patient Register (NPR), the Swedish Prescription Drug Register and the National Cause of Death Register were used in the study. Pharmacology data from 2005 to 2017 and healthcare utilization data from 1997 to 2016 were extracted.

The mean age at diagnosis was 34 years and 56.7% of the cohort were female. The 2508 patients used 3817 pharmaceutical treatments for narcolepsy in total. Modafinil, a stimulant to combat daytime sleepiness, was the most common drug in this cohort, with 1202 (47.9%) of patients prescribed it. Next come methylphenidate (33.8%) and amphetamine (26.2%), which are also stimulants. In total, 23.6% of patients were taking an antidepressant.

The study authors also noted that women took modafinil, methylphenidate, amphetamine and antidepressants more often than men. About 10% of all patients used sodium oxybate, which was prescribed to men and women at similar rates. Younger patients were more likely to receive sodium oxybate and methylphenidate than older patients. A total of 16.5% of patients in the study group did not receive any of the narcolepsy treatments listed.

Health care utilization data were available for 2493 patients in the study cohort. Patients diagnosed with narcolepsy had an average of 0.2 inpatient visits and 2.6 outpatient visits in the 12 months prior to the index date. There were data for the healthcare utilization of 2408 patients within 12 months of the index date. On average, patients with narcolepsy had 0.3 all-cause inpatient visits and 3.5 all-cause outpatient visits. Patients who received sodium oxybate (n = 238) had an average of 0.1 inpatient visits and 5.6 outpatient visits.

“This may indicate that patients treated with sodium oxybate have more severe symptomatology or may have been treated with more complex pharmacotherapy,” the study authors wrote, noting that sodium oxybate is titrated carefully to allow observation of side effects and therefore may require more visits.

The study is limited by its reliance on NPR data, which does not include primary care data and may underestimate true prevalence, the authors noted. There may also be mild, untreated cases that go undetected.

“This study provides a framework for the evaluation of narcolepsy treatment and healthcare utilization in Sweden,” the authors concluded. “Further research is needed to expand on the findings of the current study and provide a full picture of the economic and social implications.”


Gauffin H, Fast T, Komkova A, Berntsson S, Boström I, Landtblom A. Narcolepsy treatment in Sweden: an observational study. Acta Neurol Scan. 2022;145(2):185-192. doi:10.1111/ane.13532

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