David G Ingram1, Lindsay Jesteadt2, Claire Crisp2, Stacey L Simon3. 1. Children's Mercy Hospital, Kansas City, Missouri. 2. Wake Up Narcolepsy, Worcester, Massachusetts. 3. University of Colorado Anschutz Medical Campus, Aurora, Colorado.
Abstract
STUDY OBJECTIVES: 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. METHODS: A cross-sectional survey of youth with narcolepsy, parents, and sleep physicians. RESULTS: 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. CONCLUSIONS: Our results suggest strong support by key stakeholders for an interdisciplinary approach to care for youth with narcolepsy.
STUDY OBJECTIVES: 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. METHODS: A cross-sectional survey of youth with narcolepsy, parents, and sleep physicians. RESULTS: 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. CONCLUSIONS: Our results suggest strong support by key stakeholders for an interdisciplinary approach to care for youth with narcolepsy.
Authors: Lois E Krahn; Shelley Hershner; Lauren D Loeding; Kiran P Maski; Daniel I Rifkin; Bernardo Selim; Nathaniel F Watson Journal: J Clin Sleep Med Date: 2015-03-15 Impact factor: 4.062
Authors: Claudio L A Bassetti; Antoine Adamantidis; Denis Burdakov; Fang Han; Steffen Gay; Ulf Kallweit; Ramin Khatami; Frits Koning; Brigitte R Kornum; Gert Jan Lammers; Roland S Liblau; Pierre H Luppi; Geert Mayer; Thomas Pollmächer; Takeshi Sakurai; Federica Sallusto; Thomas E Scammell; Mehdi Tafti; Yves Dauvilliers Journal: Nat Rev Neurol Date: 2019-07-19 Impact factor: 42.937