Concomitant Evolution of Treatment and Symptoms of Narcolepsy in a Longitudinal Study (4522)

Objective: To examine how narcolepsy symptoms and treatment evolve over time in individuals with narcolepsy. Background: Narcolepsy is a debilitating disorder characterized by excessive sleepiness and cataplexy episodes. Little is known about how narcolepsy symptoms evolve over time once the initial diagnosis is made and what is the evolution of the treatments. Design/Methods: The study includes 322 narcoleptic individuals who were contacted twice five to seven years apart (W1 and W2). 31 narcoleptics were lost at follow-up. Therefore, 291 were interviewed twice and remained in analysis. Participants were interviewed by telephone using the Sleep-EVAL system; narcolepsy individuals were evaluated and diagnosed by a Sleep Specialist in a Sleep Center prior to the first interview. Results: At the first interview, all 291 narcoleptic individuals reported hypersomnolence, this decreased to 78.5% at follow-up. Initially, 87.3% of the narcoleptic individuals reported episodes of cataplexy; 76.1% still reported cataplexy episodes at follow-up. Therefore, the chronicity of episodes was 96.2%. A total of 71% at W1 and 56% at W2 of narcoleptics were taking at least 1 medication indicated for the treatment of narcolepsy. At W1, 49.2% of narcoleptic individuals were taking a CNS stimulant; at W2, this rate was 37%. The use was chronic (i.e., present at W2 and W1) for 52.7% of the W2 subjects. CNS depressants were used by 19.1% at W1 and 17% at W2, chronicity was 67.6%. In terms of antidepressants, 38.6% and 29.6% of subjects reported using these medications at W1 and W2 respectively. Of those taking antidepressants at W2, 58.9% reported chronic use. Combinations of CNS stimulants with antidepressants were frequent: 21.2% of narcoleptics at W1 and 16.1% at W2. Conclusions: Narcolepsy is a debilitating disease with symptoms that tend to be chronic for most of them. Treatments also are mostly taken to long term. Disclosure: Dr. Ohayon has received research support from Takeda.Dr. Krystal has nothing to disclose. Dr. Swick has nothing to disclose. Dr. Black has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Jazz Pharmaceuticals. Dr. Black has received compensation for serving on the Board of Directors of Jazz Pharmaceuticals plc. Dr. Sullivan has nothing to disclose. Dr. Shapiro has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with served on speakers' bureau for Jazz Pharmaceuticals. Dr. Shapiro has received research support from National Institutes of Health and Canadian Institutes of Health Research. Dr. Wells has nothing to disclose.