Advice for Community Physicians Treating Narcolepsy


Michael J. Thorpy, MD: Most of these patients, as we mentioned earlier, are not easy to diagnose. Sleepiness is so common, and physicians need to think about it. What should community physicians know about narcolepsy and about recognizing narcolepsy? Alon, what do you think they need to do to heighten their awareness of this condition?

Alon Y. Avidan, MD, MPH: That’s a really critical question. I think they need to recognize that narcolepsy actually presents in late childhood, early teenage years. The symptoms may not be very apparent. It’s often difficult to differentiate a child who is excessively sleepy from a variety of other reasons. And knowing that the disease actually manifests itself early, in the early teenage years—only to be diagnosed 10 years later—that gap really needs to be narrowed. Folks are not asking the right questions, and we don’t have easy tests to make the diagnosis. The tests for narcolepsy are extremely difficult.

Michael J. Thorpy, MD: The median age of onset is age 16, and we know that the majority of patients don’t get a diagnosis within their first 16 years of life. So this is a big problem in pediatrics—recognizing the symptoms.

Kiran Maski, MD, MPH: Yes. I think we need to recognize that children may present differently than adults in terms of their sleepiness and that there can be some behavioral manifestations. People are busy in clinic, so using a validated tool like the Epworth Sleepiness Scale or the Pediatric Daytime Sleepiness Scale can really tell you if you’re dealing with someone who has severe sleepiness that you need to take more seriously than someone who occasionally has sleepiness. And then I think it’s a great tip to use sleep logs. These are easily available tools. You can quickly make sure you’re not missing a routine sleep disorder like insufficient sleep or delayed sleep phase. And if you’re not, I think it’s appropriate to refer to someone who knows narcolepsy or is familiar with the workup of it, or to become more knowledgeable about the testing protocols.

Michael J. Thorpy, MD: Russ, what’s important for neurologists and primary care physicians to know if they have patients with narcolepsy, either in terms of treatment or diagnosis?

Russell Rosenberg, PhD, DABSM: First of all, everybody in primary care has a patient with narcolepsy in their practice, whether they know it or not. This is based on the numbers alone. They need to be more proactive and spend more time with that patient who complains of sleepiness. Because as Dr Avidan said, it’s not necessarily an easy diagnosis to make. I think most neurologists have a board-certified sleep specialist they can refer to. Maybe this is less so in primary care. Do not just refer to the sleep laboratory, per se, but really find somebody you know and trust who will spend the time and has that expertise. It’s important to have a good relationship with a sleep specialist.

Michael J. Thorpy, MD: Yes. What I’d like to tell clinicians is that for any instance where a patient presents with excessive daytime sleepiness, they need to include narcolepsy in the differential diagnosis. Even if the patient has sleep apnea or some other disorder that may be contributing to the sleepiness, clinicians need to include narcolepsy in the differential diagnosis. Otherwise, they’re going to miss it. We know this disorder commonly gets missed because physicians are sort of swayed by the other conditions—and they may miss the fact that the patient also has narcolepsy.

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