Abstract

Narcolepsy is a chronic neurological disorder characterized by excessive daytime sleepiness, cataplexy, and other REM-dissociative features. Assessment of treatment response requires evaluating multiple domains that include narcolepsy symptoms, comorbid psychiatric conditions (e.g., anxiety, depression, ADHD), quality of life, and medication side effects. Existing scales may be insufficient to capture the dynamic and personalized changes that occur visit by visit during treatment. Instead, individualized, patient-centered assessment entails the identification of specific patient goals and progress over the course of treatment. Optimal assessment of treatment response involves a process in which each patient’s symptoms/functioning are evaluated relative to their previous visits, followed by any necessary adjustments to medication(s) and adjunctive therapies. Input from family members may provide a more complete understanding of the patient’s symptoms and functioning. There is an unmet need for a brief instrument that can be used efficiently in the clinic setting to improve the assessment of response to treatment in patients with narcolepsy. This publication identifies challenges confronted by clinicians and discusses approaches to consider in the ongoing evaluation and treatment of narcolepsy.