Ambulatorio di Neurologia, Polo Sanitario Barberini di Crevalcore, AUSL di Bologna, Bologna, Italy.
Sleep Med. 2011 Jan;12(1):19-23. doi: 10.1016/j.sleep.2010.07.008. Epub 2010 Sep 17.
To evaluate the 5-year variation of health-related quality of life (HRQoL) and mood symptoms in a cohort of patients with narcolepsy.
Adults attending the Sleep Centre of the Department of Neurological Sciences, University of Bologna in 1997 and meeting the International Classification of Sleep Disorders-Revised criteria for the diagnosis of narcolepsy were eligible. Included patients self-administered the Medical Outcome Short Form-36 (SF-36) and the Zung depression scale (ZDS) prospectively in 1998 and 2003.
There was no significant difference between 1998 and 2003 measures of SF-36 and ZDS in the 54 patients included. About 25% of them showed moderate or severe mood symptoms in both observations. ZDS score (inversely) and duration of disease (directly) explained a percentage of variance of role physical, vitality (VT), social functioning (SF) and role emotional. At the second observation VT and SF had a further percentage of variance explained by excessive daytime sleepiness (EDS) and age at onset. Self-reported diabetes frequency doubled after 5 years (from 7% to 17%).
Patients with narcolepsy show a stable impairment of HRQoL in a 5-year period with respect to Italian normative data. Mood status and EDS negatively influence their HRQoL while disease duration has a positive influence.
评估发作性睡病患者队列中与健康相关的生活质量(HRQoL)和情绪症状的 5 年变化。
1997 年在博洛尼亚大学神经科学系睡眠中心就诊并符合国际睡眠障碍分类-修订版发作性睡病诊断标准的成年人符合入选条件。纳入的患者前瞻性地在 1998 年和 2003 年自行使用医疗结局研究简表 36 项(SF-36)和zung 抑郁量表(ZDS)进行评估。
在纳入的 54 例患者中,SF-36 和 ZDS 的 1998 年和 2003 年测量值之间无显著差异。大约 25%的患者在两次观察中均有中度或重度情绪症状。ZDS 评分(反)和疾病持续时间(正)解释了生理职能、活力(VT)、社会功能(SF)和情感职能的部分变异。在第二次观察中,VT 和 SF 的额外变异部分由日间嗜睡(EDS)和发病年龄解释。自我报告的糖尿病频率在 5 年内翻了一番(从 7%增至 17%)。
与意大利常模数据相比,发作性睡病患者在 5 年内 HRQoL 持续受损。情绪状态和 EDS 对他们的 HRQoL 产生负面影响,而疾病持续时间则有积极影响。