Clinician Insights Into Narcolepsy in Adult Patients
This content was extracted from interviews in which clinical specialists described their approaches to treating patients with narcolepsy.
Clinician Insights Into Narcolepsy in Adult Patients
This content was extracted from interviews in which clinical specialists described their approaches to treating patients with narcolepsy.
Overview
Narcolepsy clinical specialists describe their approach to discussing symptoms and their impact with patients.
“When I assess for EDS and cataplexy in my patients with narcolepsy, I look for clues that may point to less obvious manifestations of these symptoms. Some patients may experience microsleep episodes [or] more subtle manifestations of cataplexy, including jaw sagging and eye drooping.”
Kiran Maski, MD, MPH
Neurologist and Sleep Specialist
Boston Children’s Hospital; Harvard Medical School
Boston, Massachusetts
Excessive daytime sleepiness (EDS)
“Our patients with narcolepsy sometimes describe their sleepiness using words that can be interpreted in different ways, and these may point to less obvious manifestations of EDS. When patients use phrases like ‘tiredness’ or ‘having no energy,’ my first step is to find out exactly what they mean and to confirm if what they really feel is a tendency to fall asleep.”
Thomas E. Scammell, MD
Neurologist
Beth Israel Deaconess Medical Center; Harvard Medical School
Boston, Massachusetts
“Some patients may still experience symptoms associated with EDS, even if they’re no longer having lapses into sleep.”
Karl Doghramji, MD
Sleep Specialist
Thomas Jefferson University
Philadelphia, Pennsylvania
“Some patients may experience microsleep episodes, or split-seconds of sleep that intrude into wakefulness, especially during passive situations like being in a class or a meeting, or as a passenger in a car. When this happens, patients aren’t aware they’re sleeping and may keep doing activities in a semiconscious manner. These episodes may contribute to memory impairment and difficulties in concentration.”
Kiran Maski, MD, MPH
Neurologist and Sleep Specialist
Boston Children’s Hospital; Harvard Medical School
Boston, Massachusetts
“Asking family members or friends can help identify manifestations of EDS that patients themselves may not recognize.”
Karl Doghramji, MD
Sleep Specialist
Thomas Jefferson University
Philadelphia, Pennsylvania
Cataplexy
“Because there are no widely available clinical tools or questionnaires to evaluate the severity of cataplexy, we as clinicians must rely on clinical interview to understand how cataplexy is affecting our patients.”
Michael Thorpy, MD
Neurologist
Montefiore Medical Center
Bronx, New York
“Symptoms may not be obvious. In my practice, I more often see cataplexy that’s partial. It’s important to regularly assess the frequency of your patient’s symptoms and the impact on their quality of life.”
Kiran Maski, MD, MPH
Neurologist and Sleep Specialist
Boston Children’s Hospital; Harvard Medical School
Boston, Massachusetts
“It is important to not only assess how cataplexy affects physical functioning, but also how it affects the patient emotionally and psychosocially…Even if patients have said that they’re doing fine, it’s important to have an open dialogue with them to identify ongoing symptoms that are impacting their quality of life so they can be addressed and managed.”
Michael Thorpy, MD
Neurologist
Montefiore Medical Center
Bronx, New York
These expert insights provide examples of best practices for clinical interviews, which are essential in the assessment of symptoms in patients with narcolepsy.
