好色先生

好色先生

Explore the latest content from across our publications
Join The AAN

Log In

Forgot Password?
Create New Account

Loading... please wait

Abstract Details

CRESCENDO: Results from a Survey of Symptom Burden and Quality of Life in Patients with Narcolepsy Type 1
Sleep
P8 - Poster Session 8 (8:00 AM-9:00 AM)
4-001

To understand the patient experience and identify unmet needs, a survey of patients with narcolepsy type 1 (narcolepsy with cataplexy [NT1]) was conducted.

Narcolepsy is a lifelong disease with a significant burden of illness. Patients exhibit a broad spectrum of symptoms, which often require multiple treatments.

CRESCENDO was a survey of adults diagnosed with NT1 and currently on an FDA-approved medication for the condition, conducted from October-December 2023. The survey assessed symptom burden and impact on quality of life and was developed and executed in partnership with Narcolepsy Network. A third-party research firm conducted the survey and ensured patient privacy.

 
Survey respondents comprised 203 people with NT1. The most used narcolepsy treatments were wake promoting agents (53%), oxybates (47%), and stimulants (42%). The average age respondents reported first experiencing symptoms was 18 years; average age of diagnosis was 28 (range 8-67) years. Depression (37%), anxiety (37%), sleep apnea (31%), and obesity (24%) were the most frequently reported diagnosed co-occurring conditions. Most respondents reported persistent cataplexy (77%). Sixty-five percent of respondents reported that cataplexy burdened their professional life, 60% their social life, and 50% their day-to-day life; 64% and 68% reporting being embarrassed by falling down and slurred speech, respectively. Additional persistent symptoms were also observed: EDS (Epworth Sleepiness Scale; score >10) in 64% of respondents, cognitive impairment (British Columbia-Cognitive Complaints Inventory; score ≥5) in 74%, and depressive symptoms (Patient Health Questionnaire-8; score ≥5) in 78%.

 

The CRESCENDO survey provides valuable patient-generated insights into the burden of illness in persons with NT1. Despite ongoing treatment for narcolepsy, survey respondents reported a wide range of persistent symptoms including cataplexy, EDS, and cognitive impairment, with significant impact on quality of life. These results can be used to better address the significant unmet needs of this patient population.

 
Authors/Disclosures
Michael J. Thorpy, MD (Montefiore Medical Center)
PRESENTER 		Dr. Thorpy has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Jazz. Dr. Thorpy has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Avadel. Dr. Thorpy has received personal compensation in the range of $500-$4,999 for serving as a Consultant for alkermes. Dr. Thorpy has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Harmony. Dr. Thorpy has received personal compensation in the range of $500-$4,999 for serving as a Consultant for centessa. Dr. Thorpy has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Axsome. Dr. Thorpy has received publishing royalties from a publication relating to health care.
Amy Kant Amy Kant has nothing to disclose.
Keith Harper Keith Harper has nothing to disclose.
Eileen Leary, PhD (Axsome Therapeutics) Dr. Leary has received personal compensation for serving as an employee of Centessa Pharmaceuticals. Dr. Leary has received personal compensation for serving as an employee of Axsome Therapeutics. Dr. Leary has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Clinical Partners Group. Dr. Leary has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Pulse Infoframe. Dr. Leary has or had stock in Jazz Pharmaceuticals.Dr. Leary has or had stock in Axsome Therapeutics.Dr. Leary has or had stock in Centessa Pharmaceuticals.
Gregory S. Parks, PhD (Axsome Therapeutics) Dr. Parks has received personal compensation for serving as an employee of Axsome Therapeutics. Dr. Parks has received personal compensation for serving as an employee of Jazz Pharmaceuticals. Dr. Parks has stock in Axsome Therapeutics. Dr. Parks has stock in Jazz Pharmaceuticals.
Samantha Floam, DMD (Axsome Therapeutics) Dr. Floam has received personal compensation for serving as an employee of Axsome Therapeutics.
Herriot Tabuteau (Axsome Therapeutics) Herriot Tabuteau has received personal compensation in the range of $100,000-$499,999 for serving as an officer or member of the Board of Directors for Axsome Therapeutics.