Symptom measures in pediatric narcolepsy patients: a review

Abstract

Purpose: This study aimed to provide a summary of the measures to assess narcoleptic symptoms or complications in pediatric narcolepsy patients. Methods: We searched in the National Center for Biotechnology Information (NCBI) for measures of narcoleptic symptoms for pediatric patients. Further review was conducted if relevant questionnaires or information were mentioned. Results: There were only two narcolepsy-specific questionnaires, the narcolepsy severity scale and Ullanlinna Narcolepsy Scale, neither of them was developed or validated in the pediatric population. For cataplexy, all the measures were study-specific diaries and were not validated questionnaires. For excessive daytime sleepiness, the Epworth Sleepiness Scale was most frequently used to measure excessive daytime sleepiness in children. For nighttime sleep, the Children’s Sleep Habits Questionnaire was most frequently used. For depression, the Children Depression Inventory was the most frequently used. For attention-deficit/hyperactivity disorder, the Child Behavior Checklist was the most frequently used. For quality of life, KIDSCREEN was most frequently used. Conclusions: At present, there is a lack of disease-specific and validated questionnaires for pediatric narcoleptic patients. This need can be met by modifying and adjusting the existing adult questionnaires and developing new questionnaires for pediatric narcoleptic patients.