Results from Versta Research’s surveys of patients and physicians about the burdens of narcolepsy for Harmony Biosciences were presented last week at the 71st annual meeting of the American Academy of Neurology in Philadelphia. The presentation was authored by Drs. Michael Thorpy, Montefiore Medical Center Sleep-Wake Disorders Center, Joseph Hopper, Versta Research, and Albena Patroneva, Harmony Biosciences.

The research was designed to evaluate the perceptions of patients and physicians regarding the burden, symptoms, and treatment of narcolepsy. Versta Research conducted a survey of patients diagnosed with narcolepsy, and a parallel survey of physicians who treat narcolepsy patients. The aim was to (1) identify unmet needs in medical diagnosis and treatment, (2) highlight areas for improvement in diagnosis and communication between patients and physicians, and (3) highlight ways to improve the lives of people living with narcolepsy. 200 patients and 251 physicians were surveyed.

“One of important challenges we faced in this research was developing parallel surveys of patients and physicians to give us a 360-view of what happens in the clinical setting,” said Joseph Hopper, president of Versta Research. “It requires careful design so that questions will make sense to both patients and healthcare practitioners, and so that we can compare the individual experiences of patients to what doctors report for patients as a whole.”

The presentation focused on the burden that narcolepsy imposes on school, work, social activities, and patients’ relationships. For example, four in ten patients (40%) reported avoiding social interactions and social situations, with one out of five (20%) trying to avoid strong emotions in order to prevent attacks. The findings also highlighted low levels of self-reported cataplexy, even though patients identify symptoms of cataplexy. This suggests a need for increased patient education and improved healthcare provider-patient communication about this important symptom.

Detailed findings are available from the AAN presentation poster. Additionally, Harmony Biosciences’ Know Narcolepsy website offers an infographic that highlights key findings from the research.