Chin Wei-Chih, Wang Chih-Huan, Huang Yu-Shu, Hsu Jen-Fu, Chu Kuo-Chung, Tang I, Paiva Teresa
Division of Psychiatry and Sleep Center, Chang Gung Memorial Hospital, Taoyuan, Taiwan.
College of Medicine, Chang Gung University, Taoyuan, Taiwan.
Front Psychiatry. 2022 Aug 9;13:956037. doi: 10.3389/fpsyt.2022.956037. eCollection 2022.
We conducted a five-year prospective follow-up study to track the real-world quality of life of patients with narcolepsy after medication and analyzed predictors.
The study ultimately included 157 participants who completed 5-year follow-up, 111 had type 1 narcolepsy (NT1) and 46 had type 2 narcolepsy (NT2). Polysomnography, multiple sleep latency test, actigraphy and HLA-typing were conducted. The Short Form 36 Health Survey Questionnaire (SF-36), the Stanford Center for Narcolepsy Sleep Inventory, the Epworth Sleepiness Scale (ESS), the visual analog for hypersomnolence (VAS), and Conners' Continuous Performance Test were used. Descriptive statistics, repeated measures, and hierarchical linear models were applied for analysis.
Most demographic and clinical data did not significantly differ between groups, but the NT1 group had significantly more overweight, more severe narcoleptic symptoms, more positive HLA typing, shorter mean sleep latency, and more sleep onset rapid eye movement periods. No significant change to the physical domains of SF-36 was found in the total group, but we observed significant changes in emotional role functioning and social function. The NT1 group showed significant improvements in physical role functioning, emotional role functioning, and social function. The NT2 group demonstrated significant improvements in emotional role functioning. At the baseline, the NT2 group had significantly better scores, but there was no significant group difference after treatment, except for physical and social function. ESS and VAS were significantly improved during follow-up. At the baseline, the NT1 group had significantly higher ESS and VAS scores, and continuously significantly higher ESS scores during follow-up. Narcolepsy types, HLA typing, age of onset, symptom severity, attention and vigilance were significantly correlated with SF-36.
Symptom control greatly associates with the quality of life in narcoleptic patients, and medication can play the most important role. Management targeting narcoleptic symptoms, attention impairment, and drug adherence should be provided.
我们进行了一项为期五年的前瞻性随访研究，以追踪发作性睡病患者药物治疗后的实际生活质量并分析预测因素。
该研究最终纳入了157名完成五年随访的参与者，其中111例为1型发作性睡病（NT1），46例为2型发作性睡病（NT2）。进行了多导睡眠图、多次睡眠潜伏期测试、活动记录仪监测和HLA分型。使用了36项简短健康调查问卷（SF-36）、斯坦福发作性睡病中心睡眠量表、爱泼沃斯思睡量表（ESS）、嗜睡视觉模拟量表（VAS）以及康纳斯持续性操作测试。采用描述性统计、重复测量和分层线性模型进行分析。
大多数人口统计学和临床数据在两组之间无显著差异，但NT1组超重情况更多、发作性睡病症状更严重、HLA分型阳性率更高、平均睡眠潜伏期更短且睡眠开始快速眼动期更多。总体SF-36身体领域未发现显著变化，但我们观察到情感角色功能和社会功能有显著变化。NT1组在身体角色功能、情感角色功能和社会功能方面有显著改善。NT2组在情感角色功能方面有显著改善。基线时，NT2组得分显著更高，但治疗后除身体和社会功能外，两组无显著差异。随访期间ESS和VAS显著改善。基线时，NT1组ESS和VAS得分显著更高，随访期间ESS得分持续显著更高。发作性睡病类型、HLA分型、发病年龄、症状严重程度、注意力和警觉性与SF-36显著相关。
症状控制与发作性睡病患者的生活质量密切相关，药物治疗可发挥最重要作用。应针对发作性睡病症状、注意力损害和药物依从性进行管理。
