Characteristics,current treatment status and economic burden in Chinese patients with narcolepsy
OBJECTIVE To assess the clinical characteristics,current treatments and financial impact of patients with narco-lepsy in China.METHODS From November 2021 to August 2022,a comprehensive survey was conducted through self-designed questionnaires and Narcolepsy Daytime Sleepiness Scale,targeting narcoleptics via the platform developed and built China Alliance for Rare Diseases.RESULTS A total of 280 valid questionnaires were collected,covering 29 provinces of China,primarily from eastern regions.The average age of adults group was 30.8 years and 15.1 years for children/adolescent group.Both groups exhibited severe daytime sleepiness with＞50％experiencing frequent sudden falls(over 10 times a month).A large majority of participants had multiple comorbidities with dominating anxiety or depression(＞40％).Over 50％of patients in both groups were initially misdiagnosed with a median misdiagnostic duration of 5.0 months for adults and 1.0 month for children/ado-lescent,extending up to 282.1 months and 48.4 months respectively.On average,patients visited 2 hospitals before receiving a correct diagnosis and some cases required visits to 8-10 hospitals.The annual average total cost for adults with narcolepsy was 37537.10 yuan,with indirect costs as a predominant factor(53.17％)and for children/adolescents,it was 54 109.12 yuan,primar ily driven by direct medical costs(54.74％).The per capita total costs for both groups exceeded the national average disposable income per capita in 2021(35 128 yuan).CONCLUSION The economic burden of narcolepsy in China is substantial,highlight-ing the need for more effective measures to improve the accessibility of medical services,enhance the development and launch of effective and economic medicines and reduce the economic strain on rare disease patients and their families.
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