The social burden of narcolepsy
The burden of narcolepsy extends beyond psychiatric comorbidities into the social sphere. “Patients with narcolepsy do have greater difficulties in terms of social and interpersonal relationships,” said Dr. Thorpy. The disorder reduces patients’ quality of life, and educational difficulties and job loss are common in this population. “It’s a lifelong, incurable disorder, and these patients suffer an immense burden throughout their life because of the sleepiness that … affects their cognitive abilities,” said Dr. Thorpy.
“There’s an increased reporting of what probably amounts to social isolation,” said Dr. Maski. Patients often report that they must prioritize activities or events because they do not have the energy or alertness to participate in all of them. For instance, adolescents with narcolepsy frequently say that they must forgo after-school extracurricular activities because they need to prioritize studying and getting enough sleep. “Those priorities take away from their normal social life and events that they would like to participate in,” said Dr. Maski.
Another problem is that patients have the impression that others do not understand their condition. They are afraid that they will be perceived as lazy, uninterested, or unmotivated if they fall asleep. “Sometimes they withdraw from social events because they don’t want to be perceived in such a way,” said Dr. Maski. She and her colleagues encourage patients to participate in selected after-school events and to engage in social activities they find meaningful to maintain social networks.
An unpublished study of more than 300 patients with narcolepsy examined the effect of the disorder on patients’ social lives. At the end of the day, many patients “crash and burn,” said Dr. Scammell. Consequently, they do not have as much energy for social activities.
This lack of energy affects patients’ social relationships. The study suggests that patients with narcolepsy do not have as many friends as the general population does. Nevertheless, the frequency of close relationships and marriage was similar between patients with narcolepsy and the general population. “What people are doing is putting their energy into these close relationships, rather than having lots of friends and socializing a lot,” said Dr. Scammell. “I found that heartening, that people were doing their best and developed those close relationships,” which are vitally important for many reasons, he added.
The study, which has been submitted for publication, also asked patients about their sex lives. Many patients reported having had cataplexy during sex, and others reported that their medications caused problems with their sex lives. “Their doctors never ask about these things, and many patients actually would like their doctor to ask about them more,” said Dr. Scammell.
In addition, narcolepsy significantly affects a patient’s ability to drive. Patients with narcolepsy have a three- to fourfold increased risk of car accidents, said Dr. Scammell. This increased risk likely results from patients’ EDS.
But as important as this issue is for patients’ lives, there is no consensus on how to counsel patients about driving, said Dr. Maski. “For instance, it is not really clear if there is value in doing a maintenance of wakefulness test before allowing patients with narcolepsy to drive,” she said. The test is not validated in children or adolescents, which raises questions about how to advise beginning drivers with narcolepsy. “It’s not really clear that passing your maintenance of wakefulness test increases your safety behind the wheel,” said Dr. Maski.
“It’s the rare person with narcolepsy who can easily and safely do a 2-hour drive by themselves,” said Dr. Scammell. Patients must determine what their own limits are, and it is important for clinicians to discuss reasonable limits honestly with their patients. “I almost never would push to have somebody’s license taken away,” said Dr. Scammell. “But there are patients who only can drive around town for short errands, and if it’s anything more than half an hour, they start getting drowsy.”
There is a need for a public awareness campaign about narcolepsy, Dr. Scammell added. Such a campaign was carried out in Italy several years ago, and it included cartoons and TV segments. “It got a lot of people’s attention, and there was a real spike in new and correct diagnoses of narcolepsy,” said Dr. Scammell. But such a broad campaign is expensive, while narcolepsy is rare, and it might not be feasible to reach out to the general population. “But I certainly think it’s worth targeting doctors who are likely to see patients with sleepiness: neurologists, psychiatrists and psychologists, and primary care doctors,” said Dr. Scammell.