Behavioral sleep medicine services for hypersomnia disorders: a survey study

Patients with hypersomnia disorders (HD) suffer from debilitating symptoms that result in reduced functioning, depression, anxiety, and overall worse quality of life. Little is known about the need and desire of this population to utilize behavioral sleep medicine (BSM) interventions that focus on psychosocial functioning and quality of life, and there have been limited attempts to develop such interventions. The purpose of this survey study was to gather patient-centered data on engagement in pharmacological and nonpharmacological interventions, the psychosocial impact of HD symptoms on quality of life and mental health, and potential interest in BSM services, such as cognitive behavioral therapy, mindfulness or yoga, and support groups. We obtained responses from 371 individuals with HD (65.2% narcolepsy and 34.8% idiopathic hypersomnia) to an Internet-based survey. Overall, HD patients reported engagement in pharmacological and nonpharmacological interventions, with narcolepsy patients reporting more perceived effectiveness than those with idiopathic hypersomnia. In addition, HD patients reported a strong negative impact on psychosocial functioning, with elevations in depression and anxiety symptoms along with significant impact on functioning and quality of life. The majority (71.7–85.5%) voiced at least some interest in BSM services. These data suggest that there is substantial interest and need for BSM services that focus on assessment and treatment of psychosocial functioning related to HD.