Flygare Julie, Oglesby Lauren, Parthasarathy Sairam, Thorpy Michael J, Mignot Emmanuel, Leary Eileen B, Morse Anne Marie
Project Sleep, Los Angeles, CA, USA.
Project Sleep, Los Angeles, CA, USA.
Sleep Med. 2025 Jan;125:65-73. doi: 10.1016/j.sleep.2024.11.013. Epub 2024 Nov 12.
To evaluate factors associated with feeling supported in adjusting to life when diagnosed with narcolepsy or idiopathic hypersomnia.
An online survey was disseminated by nonprofit organization Project Sleep via email and social networks. Intended recipients were adults (≥18 years old) diagnosed with narcolepsy or idiopathic hypersomnia. Multivariable regression was used to assess predictors of feeling supported in adjusting to life with these conditions.
The survey was completed by 1308 individuals (narcolepsy type 1, 48.4 %; narcolepsy type 2, 28.7 %; idiopathic hypersomnia, 22.9 %). Overall, 68.7 % of respondents were ≤40 years of age; 87.7 % were female; and 88.8 % were White. Respondents lived in 38 different countries (65.5 % in the United States). At time of diagnosis, most (91.1 %) did not know anyone with the same diagnosis. At time of the survey, 486 respondents (37.2 %) still did not know anyone with their diagnosis. Only 32.3 % of respondents felt supported in adjusting to life with narcolepsy or idiopathic hypersomnia. Knowing someone with the same diagnosis at the time of the survey was a significant predictor of perceived support. Younger age (18-30 years) and being married were also associated with greater perceived support, whereas a diagnosis of narcolepsy type 2 or idiopathic hypersomnia (versus narcolepsy type 1) and living outside the US were associated with less perceived support.
People with narcolepsy or idiopathic hypersomnia often do not know others living with the same condition, even though this is associated with feeling supported. Clinicians should assess for social support and assist with resource identification.
评估与发作性睡病或特发性嗜睡症患者在适应生活过程中感受到支持相关的因素。
非营利组织“睡眠项目”通过电子邮件和社交网络开展了一项在线调查。目标受众为被诊断患有发作性睡病或特发性嗜睡症的成年人（≥18岁）。采用多变量回归分析来评估在这些情况下适应生活时感受到支持的预测因素。
1308人完成了调查（1型发作性睡病患者占48.4%；2型发作性睡病患者占28.7%；特发性嗜睡症患者占22.9%）。总体而言，68.7%的受访者年龄≤40岁；87.7%为女性；88.8%为白人。受访者来自38个不同国家（65.5%在美国）。在确诊时，大多数人（91.1%）不认识任何患有相同疾病的人。在调查时，486名受访者（37.2%）仍然不认识任何患有相同疾病的人。只有32.3%的受访者在适应发作性睡病或特发性嗜睡症生活方面感到得到了支持。在调查时认识患有相同疾病的人是感知到支持的一个重要预测因素。较年轻的年龄（18 - 30岁）和已婚也与更多的感知支持相关，而2型发作性睡病或特发性嗜睡症的诊断（相对于1型发作性睡病）以及在美国境外生活与较少的感知支持相关。
发作性睡病或特发性嗜睡症患者通常不认识其他患有相同疾病的人，尽管这与感受到支持有关。临床医生应评估社会支持情况并协助识别资源。
