Narcolepsy in New Zealand: pathway to diagnosis and effect on quality of life.

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.