The purpose of this study is to test a pediatric narcolepsy patient reported outcomes tool to assess pediatric narcolepsy symptoms and their effect on daily functioning and quality of life. The goal is to develop a clinical survey that can improve the care of pediatric narcolepsy.
WHO IS ELIGIBLE? * Children and adolescents with narcolepsy between the ages of 9-17 years * Diagnosis must be verified by a signed letter from physician in order to participate * Participants must be able to understand the purpose of the study PARTICIPATION DETAILS * Upon enrollment participants will receive an email containing a link to complete HIPAA compliant online surveys about narcolepsy symptoms, quality of life, and daily function. Surveys should take no more than 30 minutes. * One week later, some participants will receive another email with a link to complete a 10-minute follow up survey
Study Type
OBSERVATIONAL
Enrollment
212
Boston Children's Hospital
Boston, Massachusetts, United States
Survey Validation
To evaluate the content validity and reliability of the PN-PROs item pools through a field test of the item pools in a diverse, national sample of pediatric narcolepsy patients with a comparator group of pediatric mild obstructive sleep apnea patients (9-17 years).
Time frame: 2 Years
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