Giving a voice to cataplectic experience: recollections from patients with narcolepsy type 1

Study objectives: The objective of this study was to assess the narratives from the recalled accounts of cataplexy attacks of patients with narcolepsy type 1 (NT1). Methods: Twenty-two drug-naive adult patients meeting the International Classification of Sleep Disorders criteria for the diagnosis of NT1 referring to the Narcolepsy Center of the University of Bologna in the year 2017 underwent a semistructured interview focusing on their personal experiences during the cataplectic attacks. Verbatim transcripts were analyzed by thematic analysis of elementary contexts using T-LAB software. Results: The thematic analysis performed on the entire body text showed 3 clusters that explained 36.2%, 34.1%, and 29.7% of the variance, respectively: a cluster related to situations that trigger attacks of cataplexy, a cluster to bodily sensations, and another control strategies during episodes. The thematic content highlighted a tendency to disregard emotional experiences, thus affecting the ability to name, recognize, and regulate critical emotions. Conclusions: The study showed that patients with NT1 spoke of their cataplectic attacks in terms of self-reported bodily experiences, trigger situations, and their management. Therefore, patients may have developed strategies of symptom management focused on emotion avoidance and/or inhibition.