Eliciting Patient Voice to Help Optimize the Treatment and Management of Cataplexy: Anne Marie Morse, DO, FAASM

WATCH TIME: 3 minutes

"Moving from the idea of ‘when you laugh, do your knees buckle or fall to the ground’ and opening up around ‘what do you feel is different about yourself?’ Or ‘do you feel like it’s more difficult for you to do some fine motor activities?’ Many times you start hearing about the natural adjustments that they have done."

At the 2024 SLEEP Annual Meeting, held June 1-5, in Houston, Texas, a listening analysis focused on characterizing the struggles and unmet needs of patients with narcolepsy by through their own words using the MyNarcolepsyTeam social network. A total of 110 patients from January 2022 on responded to the questionnaire, with 31% reported that the time from symptom onset to diagnosis was more than 10 years. In addition, 33% of respondents reported always experienced full body cataplexy; 21% always experienced localized cataplexy; and 43% experienced a mix of both, with the remaining answering "not sure."

Cataplexy is a sudden loss of muscle tone while a person is awake that leads to weakness and a loss of voluntary muscle control. It is often triggered by sudden, strong emotions such as laughter, fear, anger, stress, or excitement. Some attacks may be mild and only involve a momentary sense of minor weakness, whereas other more severe attacks can result in total body collapse during which individuals are unable to move, speak, or keep their eyes open.

During the meeting, NeurologyLive^® sat down with lead investigator Anne Marie Morse, DO, FAASM, to discuss the complexities with cataplexy and whether patients are fully aware of their cataplectic condition. Morse, a pediatric neurologist and sleep medicine specialist at Geisinger Medical Center, discussed some of the misperceptions about cataplexy among patients and how it relates to their sleep disorder, as well as how patients try to adjust their daily lifestyle to manage their cataplexy concerns. Furthermore, she provided a clinical perspective on how to best manage cataplexy and the types of productive conversations that need to be had to get patients on the right treatment path.

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REFERENCE
1. Morse A, Lavender M, Horsnell M, et al. Understanding the debilitating nature of narcolepsy in patients’ own words: a social listening analysis. Presented at: 2024 SLEEP Annual Meeting; June 1-5; Houston, TX. ABSTRACT 0657