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Abstract Details

Demographics and Disease Characteristics Among Pediatric Patients With Narcolepsy
Sleep
P9 - Poster Session 9 (5:00 PM-6:00 PM)
14-008
To better understand the subtype prevalence, time to diagnosis, and medication use of pediatric patients with narcolepsy.
Narcolepsy is a chronic disorder with symptom onset frequently occurring between age 10-25 years. Clinical and demographic information is lacking in pediatric patients with narcolepsy. 
A retrospective review of registry data of patients aged ≤18 years with a diagnosis of narcolepsy type 1 (NT1) or 2 (NT2) from 22 US hospitals between 2009-2017 were assessed. All patients included in the analysis had undergone a clinical evaluation, an overnight polysomnographic study, and a Multiple Sleep Latency Test. Data were analyzed descriptively.
In total, 471 pediatric patients were identified in the dataset (NT1, 70.3%; NT2, 29.5%; unknown, 0.2%; female, 47.6%; white, 48.2%; black, 41.2%; non-Hispanic, 89.4%). The most common reported Tanner stage score classifications were stage 1 (n=79 [16.8%]) and stage 5 (n=55 [11.7%]; not available, n=235 [48.9%]). The median (IQR) ages at the onset of excessive daytime sleepiness (EDS) and at diagnosis were 9.0 (6.9-12.5) years and 12.0 (8.5-15.0) years, respectively. Mean (SD) Epworth Sleepiness Scale for Children and Adolescents (ESS-CHAD) scores in patients before treatment were 17.8 [4.5]. Over half of the patients reported restless sleeping (62.6%), sleep maintenance problems (58.4%), sleep talking (57.3%), and snoring (54.4%). The most reported comorbidity was excessive weight gain (48.4%). Prior treatments included stimulants (87.9%), wake-promoting agents (69.4%), and antidepressants (50.7%); 30.6% had tried sodium oxybate.
In this dataset, most patients reported a delay of ~3 years from symptom onset to narcolepsy diagnosis, with NT1 being a more prevalent diagnosis than NT2, and a wide range of pubertal developmental stages at diagnosis was observed. ESS-CHAD scores reflected substantial levels of EDS; sleep-related symptoms were also common in these patients. These findings emphasize the need for timely diagnosis and access to effective treatments for these patients.
Authors/Disclosures
Nicole Giudici
PRESENTER 		Ms. Giudici has received personal compensation for serving as an employee of Avadel Pharmaceuticals.
Kiran P. Maski, MD (Boston Children'S Hospital) An immediate family member of Dr. Maski has received personal compensation for serving as an employee of Sanofi Genzyme. Dr. Maski has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Harmony Biosciences. Dr. Maski has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Alkermes. Dr. Maski has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Jazz Pharmaceuticals. Dr. Maski has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Takeda. Dr. Maski has received personal compensation in the range of $500-$4,999 for serving as a Consultant for KemPharm. Dr. Maski has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Idorsia. Dr. Maski has received personal compensation in the range of $5,000-$9,999 for serving as an Expert Witness for Hayes Legal Services. An immediate family member of Dr. Maski has stock in Sanofi Genzyme. The institution of Dr. Maski has received research support from Jazz Pharmaceuticals. The institution of Dr. Maski has received research support from NIH 5K23NS104267-2. The institution of Dr. Maski has received research support from Coverys. Dr. Maski has received publishing royalties from a publication relating to health care.
Anne M. Morse, DO (Geisinger Medical Center) Dr. Morse has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Jazz Pharmaceuticals. Dr. Morse has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for Avadel. Dr. Morse has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Harmony Biosciences. Dr. Morse has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Alkermes. Dr. Morse has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Takeda. Dr. Morse has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Eisai. Dr. Morse has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Jazz Pharmaceuticals. Dr. Morse has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Avadel. Dr. Morse has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Avadel. Dr. Morse has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Harmony biosciences. Dr. Morse has received personal compensation in the range of $100,000-$499,999 for serving as an Expert Witness for Hayes solicitors. Dr. Morse has received publishing royalties from a publication relating to health care. Dr. Morse has received personal compensation in the range of $100,000-$499,999 for serving as a CEO with DAMM Good Sleep, LLC.
Sally Ibrahim, MD The institution of Dr. Ibrahim has received research support from Jazz Pharmaceuticals. The institution of Dr. Ibrahim has received research support from Avadel Pharmaceuticals. The institution of Dr. Ibrahim has received research support from Harmony. The institution of Dr. Ibrahim has received research support from NIH.
Rakesh Bhattacharjee, MD Dr. Bhattacharjee has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Jazz Phamaceuticals. Dr. Bhattacharjee has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Avadel Phamaceuticals. Dr. Bhattacharjee has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Harmony Biosciences. Dr. Bhattacharjee has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Harmony Biosciences. Dr. Bhattacharjee has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for American Academy of Sleep Medicine. The institution of Dr. Bhattacharjee has received research support from Harmony Biosciences. The institution of Dr. Bhattacharjee has received research support from Jazz Phamaceuticals.
Judith Owens, MD Dr. Owens has received personal compensation in the range of $0-$499 for serving as a Consultant for Indorsia. Dr. Owens has received personal compensation in the range of $0-$499 for serving as a Consultant for Citrine Pharmaceuticals. Dr. Owens has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Harmony Biosciences. Dr. Owens has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sleep Number. Dr. Owens has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Wolters Kluwer. Dr. Owens has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for WebMD. Dr. Owens has received personal compensation in the range of $5,000-$9,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Taylor and Francis. Dr. Owens has received publishing royalties from a publication relating to health care.
Luis Ortiz (JHACH) Luis Ortiz has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Avadel. Luis Ortiz has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Jazz Pharmaceuticals. Luis Ortiz has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Harmony Biosciences. Luis Ortiz has stock in Ascendis Pharma. Luis Ortiz has a non-compensated relationship as a Speaker with Wake Up Narcolepsy that is relevant to AAN interests or activities.
Gary Feldman, MD Dr. Feldman has nothing to disclose.
Narong Simakajornboon, MD Prof. Simakajornboon has received personal compensation in the range of $5,000-$9,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for American Academy of Sleep Medicine . The institution of Prof. Simakajornboon has received research support from NIH.
Joshua Henderson Mr. Henderson has received personal compensation for serving as an employee of Pulse Infoframe.
Jennifer Gudeman (Avadel Pharmaceuticals) Miss Gudeman has received personal compensation for serving as an employee of Avadel Pharmaceuticals. Miss Gudeman has stock in Avadel Pharmaceuticals.
Brian Abaluck, MD Dr. Abaluck has received personal compensation for serving as an employee of Avadel Pharmaceuticals.
Femida Gwadry-Sridhar, PhD Dr. Gwadry-Sridhar has received personal compensation for serving as an employee of Pulse infoframe LLC. Dr. Gwadry-Sridhar has received personal compensation in the range of $50,000-$99,999 for serving as an officer or member of the Board of Directors for MedPace. Dr. Gwadry-Sridhar has stock in MedPace.