Background: Patients with narcolepsy may be at increased perioperative risk due to the interactions among anesthesia, narcolepsy, and narcolepsy medications. This study sought to determine the perioperative experience of narcoleptic patients undergoing anesthesia or sedation, the frequency of perioperative counseling, and self-reported surgical complications.
Methods: A 22-question survey was developed by expert consensus and distributed by the Narcolepsy Network. Recruitment was via the Narcolepsy Network's list-serve and a Facebook link to the survey. One thousand and twenty respondents reported a diagnosis of narcolepsy and 1 or more procedures under anesthesia or sedation. Descriptive, comparative statistics and logistic regression were utilized.
Results: Respondents were mostly women (79.5%) and Caucasian (84.9%), with a mean age of 45 ± 16 years. Most respondents did not receive counseling regarding the possibility of increased sleepiness (70%), cataplexy (90%), or drowsy driving (59%) postanesthesia. More than half of respondents reported adverse events (medication withdrawal symptoms, inadequate pain relief, increased cataplexy). Subjects with cataplexy more frequently reported surgical complications (70% vs 31%; P = .03) and medication withdrawal symptoms (stimulant medications: odds ratio, 3.0 [95% CI, 1.9, 3.06]; P > .001 and antidepressant medications: odds ratio, 6.5 [95% CI, 2.1-19.5]; P = .001). Of the total sample, 18% indicated surgical complications. Undergoing 5 or more separate surgeries or procedures was associated with a 2-fold increase in self-reported complications (odds ratio, 2.2 [95% CI, 1.3-3.4]; P = .001), difficulty waking (odds ratio, 2.1 [95% CI, 1.45-3.06]; P = .001), and inadequate pain relief (odds ratio, 1.77 [95% CI, 1.01-3.13]; P < .05).
Conclusions: Most narcoleptic patients report not receiving counseling regarding potential worsening of narcolepsy symptoms postanesthesia or an increased risk of drowsy driving. Enhanced education of perioperative providers about potential narcolepsy-related issues is essential. Respondents frequently self-report adverse events in the perioperative period. Future studies should clarify the perioperative risk associated with narcolepsy to optimize the care and safety of narcoleptic patients.