Clinical, Economic, and Humanistic Burden Associated With Narcolepsy: Results From a Systematic Literature Review
Introduction: Narcolepsy, a rare, chronic neurological condition characterized by excessive daytime sleepiness, is associated with negative impacts to patients’ lives. Studies examining the clinical, economic, and humanistic burden associated with narcolepsy were systematically reviewed.
Methods: Systematic literature searches in PubMed (2012-2022) and select conference databases (2020-2022) identified English-language studies related to burden of narcolepsy. Outcomes included clinical, economic, and humanistic burden.
Results: Sixty-four studies were included for review; 53 (83%) summarized data for clinical, 8 (13%) for economic, and 27 (42%) for humanistic burden. Mean time from symptom onset to diagnosis ranged from 8.7-14.6 years. Early age of onset generally predicted greater diagnostic delays. Patients with narcolepsy presented with high rates of comorbidities (eg, neuropsychiatric disorders, cardiovascular diseases) versus healthy controls (HC). Narcolepsy was associated with higher rates of obesity (2-5x greater), smoking (1.7-1.9x greater) and mortality (1.5x greater) versus HC. Patients with narcolepsy faced higher medical costs attributable to hospitalizations, emergency department visits, outpatient visits, and medications versus HC. Narcolepsy was associated with short-term disability incidents, presenteeism, absenteeism, and loss of employment. Patients with narcolepsy exhibited lower quality of life (QoL) versus HC across studies. Functional limitations associated with narcolepsy included the inability to care for children. Education was significantly impacted by narcolepsy due, in part, to attention deficits.
Conclusions: Narcolepsy is associated with physical/mental health comorbidities, impaired QoL, reduced work productivity, and increased use of healthcare resources. Future research is needed to better understand clinical, economic, and humanistic outcomes in subgroups (eg, narcolepsy subtypes).
