Understanding the Debilitating Nature of Narcolepsy in Patients’ Own Words: A Social Listening Analysis
Introduction: To further characterize struggles and unmet needs of people with narcolepsy (PWN), passive social listening (SL) explored how PWN describe narcolepsy using their own words.
Methods: Following an online survey, organic posts, comments, questions, and answers from MyNarcolepsyTeam, a social network for sharing experiences with narcolepsy, were analyzed.
Results: Of 110 survey respondents, 31% reported their time to diagnosis from symptom onset was ≥10 years. SL highlighted both misdiagnoses (eg, depression) and “missed” diagnoses (eg, sleep apnea). Almost half (43%) reported pain as a comorbidity. SL revealed the burden of painful comorbidities (eg, fibromyalgia, migraines, neuropathy), which often led to additional medications and further sleep disruption. While 90% reported excessive daytime sleepiness, 81% also reported sleep disturbances. Nighttime disruptions included poor sleep quality, vivid dreams, frequent awakenings, sleep paralysis, and abnormal REM cycles. Structured routines improved sleep for some. Additionally, 33% of respondents reporting cataplexy always experienced full body cataplexy; 21% always experienced localized cataplexy; 43% experienced both; the remaining answered ‘not sure.’ SL highlighted cataplexy dangers, including falls/fractures. Conversations revealed the full range of emotions that trigger attacks (laughter, being startled, stress). Overall, 65% were taking ≥2 medications for daytime and/or nighttime narcolepsy symptoms. Conversations also highlighted the challenges with complex treatment regimens as PWN try to cope with the full symptom spectrum.
Conclusion: Insight into the experiences and symptom management of PWN in their own words will improve clinicians’ understanding of the challenges and needs of PWN, potentially leading to faster diagnosis and more effective, individualized treatment.
