Campbell Angela J, Signal T Leigh, O'Keeffe Karyn M, Bakker Jessie P
WellSleep Sleep Investigation Centre, Department of Medicine, University of Otago, Wellington, New Zealand.
N Z Med J. 2011 Jun 10;124(1336):51-61.
There has been no attempt to survey New Zealanders with narcolepsy to determine their pathway to diagnosis, symptoms, treatment, or quality of life. We therefore aimed to develop a comprehensive questionnaire, and compare responses on measures of daytime sleepiness and quality of life between individuals with narcolepsy and the general New Zealand population.
A questionnaire was developed encompassing descriptive information, daytime sleepiness and sleep habits, general health and wellbeing, diagnosis and treatment of narcolepsy, symptoms, and quality of life. Ninety-two individuals were identified through medical specialists and a local support group.
Complete responses were obtained from 54 individuals (63% female, mean age 54.7 ± 18.3 years). The mean Epworth Sleepiness Scale score was 16.4 ± 5.4 (/24). Symptoms first appeared at 20.7 ± 9.7 years of age on average, although diagnosis did not take place until 33.4 ± 13.8 years of age. Individuals with narcolepsy reported substantially lower health-related quality of life than the general New Zealand population. Less than half of those diagnosed with narcolepsy had undergone an objective evaluation including a sleep study.
New Zealanders with narcolepsy suffer from an excessive level of daytime sleepiness, and have significantly poorer health-related quality of life than the general population. There are a number of inconsistencies between the diagnostic pathway in New Zealand and best-practice guidelines for diagnosis and treatment.
此前尚未尝试对新西兰发作性睡病患者进行调查，以确定他们的诊断途径、症状、治疗情况或生活质量。因此，我们旨在编制一份全面的调查问卷，并比较发作性睡病患者与新西兰普通人群在白天嗜睡程度和生活质量测量指标上的回答。
编制了一份涵盖描述性信息、白天嗜睡和睡眠习惯、总体健康和幸福感、发作性睡病的诊断和治疗、症状以及生活质量的调查问卷。通过医学专家和当地一个支持小组确定了92名患者。
共获得54名患者的完整回答（63%为女性，平均年龄54.7±18.3岁）。平均爱泼沃斯嗜睡量表评分为16.4±5.4（满分24分）。症状平均首次出现于20.7±9.7岁，但直到33.4±13.8岁才得以诊断。发作性睡病患者报告的与健康相关的生活质量明显低于新西兰普通人群。不到一半被诊断为发作性睡病的患者接受过包括睡眠研究在内的客观评估。
新西兰发作性睡病患者白天嗜睡程度过高，与健康相关的生活质量明显低于普通人群。新西兰的诊断途径与诊断和治疗的最佳实践指南之间存在一些不一致之处。
