The Humanistic and Economic Burden of Narcolepsy

Abstract

Study Objectives: To evaluate the burden of narcolepsy--with respect to psychiatric comorbidities, Health-Related Quality of Life (HRQoL), direct costs for healthcare resource utilization, and indirect costs for reported work loss-through comparison of patients to matched controls. Methods: This analysis was conducted on data from the NHWS n = 75,000, 2012 NHWS n = 71,157, and 2013. Patients who reported a narcolepsy diagnosis (n = 437) were matched 1:2 with controls (n = 874) on age, sex, race/ethnicity, marital status, education, household income, body mass index, smoking status, alcohol use, exercise, and physical comorbidity. Chi-square tests and one-way analyses of variance were used to assess whether the narcolepsy and control groups differed on psychiatric comorbidities, HRQoL, labor force participation, work productivity, and healthcare resource utilization. Results: Patients with narcolepsy, in comparison to matched controls, reported substantially (two to four times) greater psychiatric comorbidity, HRQoL impairment, prevalence of long-term disability, absenteeism, and presenteeism, and greater resource use in the past 6 mo as indicated by higher mean number of hospitalizations, emergency department visits, traditional healthcare professional visits, neurologist visits, and psychiatrist visits (each p < 0.05). Conclusions: These population-based data suggest that a narcolepsy diagnosis is associated with substantial adverse impact on mental health, HRQoL, and key economic burdens that include work impairment, resource use, and both direct and indirect costs. Although this study is cross-sectional, the results highlight the magnitude of the potential opportunity to improve mental health, lower costs, and augment work-related productivity through effective assessment and treatment of narcolepsy. I NTRO DUCTI O NNarcolepsy is a chronic disorder characterized by excessive daytime sleepiness that can be associated with significant effect on quality of life and disability. Narcolepsy is also associated with obesity, nighttime sleep disturbances, and functional impairment.1,2 Narcolepsy typically presents during teenage years or young adulthood and persists through adulthood. Prevalence estimates range between 25 and 50 per 100,000 people. 3,4 Numerous studies have found health-related quality of life (HRQoL) among narcolepsy patients to be significantly impaired in comparison with healthy controls or the general population. [5][6][7][8][9][10][11][12][13][14] Patients are impaired on several domains of HRQoL including mood, psychopathology, and other areas such as marital and work problems.5-14 Narcolepsy has been associated with a negative impact on work productivity including increased unemployment, 15

Correlation of Changes in Patient-Reported Quality of Life With Physician-Rated Global Impression of Change in Patients With Narcolepsy Participating in a Clinical Trial of Sodium Oxybate: A Post Hoc Analysis

“…Narcolepsy, a chronic neurologic disease with no known cure, is associated with an economic burden resulting from higher healthcare resource utilization and reduced productivity relative to those without narcolepsy, and a humanistic burden, since patients with narcolepsy report substantially impaired health-related quality of life (HRQoL) [ 1 – 4 ]. Studies that have used the 36-item Short Form Health Status survey (SF-36) [ 5 ], which is a generic patient-reported measure of HRQoL, have consistently shown lower scores on most SF-36 subscales in narcolepsy patients not only compared with the general population, but also relative to patients with other chronic conditions including obstructive sleep apnea, Parkinson’s disease, and epilepsy [ 6 – 15 ].…”

The cost utility of pitolisant as narcolepsy treatment

“…Narcolepsy is a disabling disease, limiting everyday life and frequently leading to reduced quality of life. 5,[8][9][10][11][12] Moreover, narcolepsy is associated with considerable socioeconomic effects, including lower employment rates, lower income, and higher rates of contact with the healthcare system than controls. [12][13][14] The disease is also associated with severe co-morbidities such as cardiovascular diseases, musculoskeletal pain, weight gain, and subsequent sleep apnea, as well as depression.…”

“…5,[8][9][10][11][12] Moreover, narcolepsy is associated with considerable socioeconomic effects, including lower employment rates, lower income, and higher rates of contact with the healthcare system than controls. [12][13][14] The disease is also associated with severe co-morbidities such as cardiovascular diseases, musculoskeletal pain, weight gain, and subsequent sleep apnea, as well as depression. 8,[15][16][17] Pharmacotherapy is the most common treatment in order to alleviate symptoms caused by narcolepsy.…”

Listening to the Patient Voice in Narcolepsy: Diagnostic Delay, Disease Burden, and Treatment Efficacy

“…9 More recently, impaired cognition, inattention, and a high prevalence of mood disorders have been reported in cross-sectional studies of patients with narcolepsy, suggesting a broad range of comorbidities that affect quality of life and daytime functionality. 10,11 To gain better understanding of the narcolepsy disease experience for future drug development, the United States Food and Drug Administration (FDA) held a public meeting entitled "Narcolepsy Patient-Focused Drug Development" on September 24, 2014 with narcolepsy advocacy groups and patients with narcolepsy. 12 The purpose of this meeting was to systematically gather patients' perspectives on their condition and available therapies to treat their symptoms.…”