Purpose: Most patients with epilepsy report a desire for more information on the disease and possible treatments than provided by clinicians. In the past two decades, many have turned to the internet for information, but this information is of variable accuracy and objectivity. We assessed the prevalence of internet use for gathering information about epilepsy and patient satisfaction in a sample of epilepsy patients in China.
Methods: A cross-sectional multicenter study was conducted using a standard anonymous questionnaire that gathered demographic information and information on internet use. The reasons for using the internet, the sites visited, general satisfaction with the information provided, and impact on self-management were investigated.
Results: Of the 780 patients studied, 288 (36.9%) had internet access and 73% of these participants reported searching for general information on epilepsy, 64% for treatment information, 30% to prepare for actual hospital visits, 12% to communicate with other patients, 5% for purchasing products for epilepsy management, and 6% for other reasons. All of the participants used search engines. However, only 6% browsed websites recommended by their doctors and 96.8% thought the information gathered from other sites was inadequate.
Conclusion: The internet holds great potential for informing epileptic patients about their disease and to seek social support. Governments, hospitals, doctors, and internet service providers must collaborate to ensure that this information is reliable and beneficial.
Keywords: Epilepsy; Health information; Internet; Self-management.
Copyright © 2013 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.