Aims: 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.
Methods: 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.
Results: 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.
Conclusions: 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.