Treatment and care delivery in pediatric narcolepsy: a survey of parents, youth, and sleep physicians.

Abstract

To describe the most commonly used treatments in pediatric narcolepsy and their perceived effectiveness, as well as to elicit key stakeholder perspectives on the most optimal manner in which care ought to be delivered to youth with narcolepsy. A cross-sectional survey of youth with narcolepsy, parents, and sleep physicians. Complete survey results were available for 35 youth with narcolepsy, 116 parents, and 30 sleep physicians. Overall there was general agreement among family and physicians regarding most effective treatments, including both pharmacologic (stimulants, sodium oxybate, and modafinil/armodafinil) and nonpharmacologic (sleep schedule, exercise, diet) approaches. There was a stronger interested in cannabidiol oil (CBD) from families compared to physicians. Both families and physicians also endorsed a need for multispecialty care, ideally delivered in a same day setting and including specialists in mental health, social work, and nutrition. Quality measures were felt to be important but are not currently tracked by most sleep physicians. Qualitative responses highlight the value families place on providers who listen well and remain open-minded. Our results suggest strong support by key stakeholders for an interdisciplinary approach to care for youth with narcolepsy.