Study objectives: Excessive daytime sleepiness (EDS) interferes with functioning and causes distress for narcoleptic patients. Self-management techniques are believed to an important part of a comprehensive treatment plan for patients with narcolepsy. Relatively little is known about how behavioral tactics are perceived and which techniques are used more often. This study examined behavioral techniques used for EDS in a non-clinical sample.
Methods: A survey developed by the authors listing 16 different possible behavioral tactics plus write in options was distributed at a national Narcolepsy Network conference.
Results: Data were analyzed for 44 respondents who self-identified as having narcolepsy. Walking around a room was the most commonly used tactic identified by 73% of respondents. Napping ranked second, with scheduled and unplanned naps endorsed to the same degree. Talking, fidgeting and eating tied for third most cited. On a visual analog scale 0-10 with 10 high, the absolute effectiveness of behavioral techniques were rated as 7.2 and effectiveness relative to optimized prescription medication was lower at 5.3. Only 66% of respondents recalled ever having been counseled by a health care provider to try self-management techniques.
Conclusions: Walking around and naps were identified as the most used self-management options. Respondents viewed behavioral techniques to have moderate value. Relatively few participants recalled being encouraged by health care providers to supplement prescription approaches with self-management strategies. Healthcare providers need more familiarity with behavioral techniques for managing excessive daytime sleepiness so they can counsel patients to explore these interventions.