With this week’s National Sleep Awareness Week educating millions of people around the country about the health benefits of sleep, Wake Up Narcolepsy, the nation’s leading narcolepsy research and awareness organization, releases new findings from its study containing invaluable information for the 200,000+ Americans currently affected by the disorder.
Dr. Kiran Maski of Boston Children’s Hospital, one of the foremost authorities in sleep and narcolepsy, recently analyzed Wake Up Narcolepsy’s groundbreaking study as part of the organization’s patient advocacy initiative “Unite Narcolepsy,” which surveyed 1,699 patients on questions posed for the The U.S. Food and Drug Administration (FDA). Wake Up Narcolepsy reports these key findings this week in an effort to inform the public and health care providers about common concerns and perceptions as well as the efficacy of treatment options as reported by patients with narcolepsy.
In light of the findings, Dr. Maski says, “The mission is clear – continued drug development of narcolepsy medications are needed to help manage symptoms as many respondents report problems with side effects, access and efficacy of current medication options.”
Ten highlights from Wake Up Narcolepsy’s recent findings include:
- 70% of narcoleptics were undiagnosed more than one year after symptoms began
- 58% reported having to manage other health conditions in addition to their narcolepsy: obstructive sleep apnea, depression, anxiety, and chronic pain conditions
- 54% had to make changes at work/school
- 52% reported having to make changes with the way they interacted with family and/or friends
- 42% reported making adjustments to their daily schedules to manage symptoms
- 43% of respondents reported a ? 6 year lag time between the time their symptoms began and the diagnosis of narcolepsy was made.
- Though narcolepsy is considered a fairly stable condition in the medical literature, 17.9% of respondents reported that symptoms seemed more unstable or unpredictable than when they first started. This finding was not associated with current age or duration of narcolepsy symptoms.
- 30% of respondents reported being diagnosed less than 12 months from the start of narcolepsy symptoms
- 13% of respondents reported receiving a diagnosis 1-2 years after symptoms onset and 14% (243/1699) reported a 3-5 year lag.
- 58% of respondents reported taking medications prescribed by a health care provider to treat their narcolepsy symptoms.
Survey participants were also asked what makes their symptoms better:
- 45% of respondents said they benefited from non-pharmacologic treatments. Strict sleep hygiene with regular sleep timings and inclusion of daytime naps was the most commonly reported beneficial treatment reported among participants (23.6%) followed by changes to diet (11.6%), and exercise (9%).
- 84% of participants taking medications for narcolepsy reported a substantial improvement in their daily functioning. Neither age of respondents or duration of symptoms influence this medication efficacy rate. This data highlights that while medications are very effective in improving symptoms, patients still have a high disease burden. Given that many benefit from non-pharmacologic treatments, future studies on clinical efficacy of lifestyle modifications are needed.
The above findings concluded that the diagnostic delay in narcolepsy is an important advocacy issue as 70% of participants in this study reported not receiving a diagnosis of narcolepsy more than 1 year after symptoms began. Despite that most participants report improvement of functioning on medications for narcolepsy, the disease burden is still high in terms of residual symptoms and disease co-morbidities. As a result, many respondents report a pervasive impact of narcolepsy on multiple domains of life including work, school, social/family relationship, and activities of daily living. Interestingly, many report symptoms benefit with non-pharmacologic interventions such as sleep scheduling and improvements in diet and exercise. Such non-pharmacologic interventions should be more rigorously studied for future disease management recommendations.