Status of narcolepsy-related information available on the Internet in Japan and its effective use

Narcolepsy patients often access the Internet using key words mostly consisting of common symptoms in order to further learn about their disease. Although information from diverse sources floods the Internet, the quality of narcolepsy-related information appears to have improved, and harmful information does not often enter the top access rankings. Narcolepsy patients consider the information available on the Internet as being useful and wish to know more about new treatments, drugs, and the situation of other narcolepsy patients. The time from the onset of the symptoms to a definitive diagnosis has been significantly shorter in patients using the Internet compared to those who have not used it (8.8 vs 19.8 years). From this point of view, we believe that the Internet plays an important role in improving the quality of life of narcolepsy patients. Patients often desire information regarding the hereditary nature of the disease and ways to deal with their disease. There is a need to accurately assess what kind of information patients are looking for and to provide reliable information.