Capital Medical University School of Nursing, Beijing, China; Division of Sleep Medicine, Peking University People's Hospital, Beijing, China.
NeuroDiderot INSERM, Université de Paris, Paris, France.
Sleep Med. 2023 Oct;110:17-24. doi: 10.1016/j.sleep.2023.07.010. Epub 2023 Jul 17.
To develop and psychometrically test the pediatric narcolepsy severity scale (P-NSS) for pediatric with narcolepsy type 1 (NT1).
Item pool was formed based on literature review, clinical judgement of the expert panel and input of the narcoleptic patients and their parents. Psychometric properties were evaluated after applying the P-NSS in a sample of 200 patients (8-18 years age) with narcolepsy. Analyses included item analysis, validity analysis and reliability analysis.
P-NSS consisted four factors with a total of 17 items. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) revealed four distinct and theoretically coherent factors, explaining 63.4% of the total variance. The fitting results of the CFA model were χ2/dƒ = 2.235, GFI = 0.876, AGFI = 0.822, RMSEA = 0.079, TLI = 0.908, CFI = 0.927. P-NSS score is correlated with Pediatric Daytime Sleepiness Scale (r = 0.512, P < 0.01), Epworth Sleepiness Scale for Children and Adolescents (r = 0.355, P < 0.01) and Narcolepsy quality-of-life instrument with 21 questions (r = -0.512, P < 0.01). Cronbach's α coefficient for P-NSS and four dimensions were from 0.732 to 0.915. The split-half reliability was 0.882 (P < 0.01).
P-NSS is proved to be a reliable and valid measure for Chinese children with NT1. It may serve in China as a valuable and easily accessible outcome measure for using in narcolepsy trials, the clinic with improved responsiveness and long term follow-up.
为 1 型发作性睡病（NT1）患儿开发并心理计量学测试儿科发作性睡病严重程度量表（P-NSS）。
基于文献回顾、专家小组的临床判断以及发作性睡病患儿及其父母的意见，形成项目池。在 200 名（8-18 岁）发作性睡病患儿样本中应用 P-NSS 后，评估其心理计量学特性。分析包括项目分析、有效性分析和可靠性分析。
P-NSS 由四个因素组成，共有 17 个项目。探索性因子分析（EFA）和验证性因子分析（CFA）显示出四个不同的、具有理论一致性的因子，解释了总方差的 63.4%。CFA 模型的拟合结果为 χ2/dƒ=2.235、GFI=0.876、AGFI=0.822、RMSEA=0.079、TLI=0.908、CFI=0.927。P-NSS 评分与儿童日间嗜睡量表（r=0.512，P<0.01）、儿童和青少年嗜睡量表（r=0.355，P<0.01）和包含 21 个问题的发作性睡病生活质量量表呈正相关（r=-0.512，P<0.01）。P-NSS 和四个维度的克朗巴赫 α系数为 0.732 至 0.915。两半可靠性为 0.882（P<0.01）。
P-NSS 被证明是一种可靠和有效的中国 NT1 患儿测量工具。它可能在中国作为一种有价值且易于获取的结局测量指标，用于发作性睡病试验、诊所，具有改善的反应性和长期随访。
