Patient-Reported Measures of Narcolepsy: The Need for Better Assessment.

Kallweit, Ulf; Schmidt, Markus; Bassetti, Claudio (2017). Patient-Reported Measures of Narcolepsy: The Need for Better Assessment. Journal of clinical sleep medicine, 13(5), pp. 737-744. American Academy of Sleep Medicine 10.5664/jcsm.6596

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STUDY OBJECTIVES Narcolepsy, a chronic disorder of the central nervous system, is clinically characterized by a symptom pentad that includes excessive daytime sleepiness, cataplexy, sleep paralysis, hypnopompic/hypnagogic hallucinations, and disrupted nighttime sleep. Ideally, screening and diagnosis instruments that assist physicians in evaluating a patient for type 1 or type 2 narcolepsy would be brief, easy for patients to understand and physicians to score, and would identify or rule out the need for electrophysiological testing. METHODS A search of the literature was conducted to review patient-reported measures used for the assessment of narcolepsy, mainly in clinical trials, with the goal of summarizing existing scales and identifying areas that may require additional screening questions and clinical practice scales. RESULTS Of the seven scales reviewed, the Epworth Sleepiness Scale continues to be an important outcome measure to screen adults for excessive daytime sleepiness, which may be associated with narcolepsy. Several narcolepsy-specific scales have demonstrated utility, such as the Ullanlinna Narcolepsy Scale, Swiss Narcolepsy Scale, and Narcolepsy Symptom Assessment Questionnaire, but further validation is required. CONCLUSIONS Although the narcolepsy-specific scales currently in use may identify type 1 narcolepsy, there are no validated questionnaires to identify type 2 narcolepsy. Thus, there remains a need for short, easily understood, and well-validated instruments that can be readily used in clinical practice to distinguish narcolepsy subtypes, as well as other hypersomnias, and for assessing symptoms of these conditions during treatment.

Item Type:

Journal Article (Review Article)


04 Faculty of Medicine > Department of Head Organs and Neurology (DKNS) > Clinic of Neurology

UniBE Contributor:

Kallweit, Ulf; Schmidt, Markus and Bassetti, Claudio


600 Technology > 610 Medicine & health




American Academy of Sleep Medicine




Stefanie Hetzenecker

Date Deposited:

27 Feb 2018 09:08

Last Modified:

26 Oct 2019 07:21

Publisher DOI:


PubMed ID:


Uncontrolled Keywords:

cataplexy narcolepsy narcolepsy scales patient-reported measures




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