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.
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.
Authors: Birgit Frauscher; Laura Ehrmann; Thomas Mitterling; David Gabelia; Viola Gschliesser; Elisabeth Brandauer; Werner Poewe; Birgit Högl Journal: J Clin Sleep Med Date: 2013-08-15 Impact factor: 4.062
Authors: Madhukar Trivedi; Sapna Erat Sreedharan; Shana N Nair; C A Anees; J P Unnikrishnan; P S Sarma; Ashalatha Radhakrishnan Journal: Ann Indian Acad Neurol Date: 2019-10-25 Impact factor: 1.383