Abstracts

Rationale: To evaluate user concerns, experiences and needs of people with epilepsy using a web-based survey tool on www.epilepsy.com. Methods: Epilepsy.com began surveying users of the website with insta-polls in November 2005. The Insta-polls present one question with multiple choice answers developed by the ETDP team. New polls were mounted monthly at first, then biweekly as user interest increased. Clicking on a response instantly submitted an answer and allowed immediate viewing of overall survey results. The source of individual responses was not tracked. Responses were archived for later review. Surveys were rotated on a predetermined schedule. The number of responses increased over time, with total responses varying for each question. Results: A broad range of topics were presented in 44 polls as of May 2007, with the focus on experiences and self-management concerns. Typical viewership can be described by responses. Age at first seizure (n=590): less than 5 years for 28%, 6-12 years for 18%, 20-30 for 22%. Epilepsy diagnosis (n=642): within 6 months after first seizure 50% and delayed 2 years or more for 26%. Balance between seizures and side effects (n=1000): persistent seizures and side effects 47%, no seizures and no side effects 17%. Injuries from seizures (n=117): cuts and bruises 55% and head injuries 21%. Seizure triggers (n=307): lack of sleep 25% and missed medication 14%. Stress associated with seizures (n=450) always or frequently for 61%. Diet was perceived as playing role in seizures for 51%. Plans for preventing injuries (n=385): 25% had no plan and 30% had never talked to anyone about a plan. Seizure calendar or diary (n=219) used by 52% with 30% interested in web-based diary. Plans for seizure emergencies (n=224): 23% had none and 28% didn't know how to create one. Conclusions: This approach to gathering information directly from people with epilepsy and their loved ones by the internet obtained data more easily than via cross-sectional studies by phone or mail surveys. This approach also provided immediate feedback to the user of their views in relation to other users. Questions can be repeated after a period of time to ascertain changes. For individual users, the immediate feedback can reinforce critical messages and highlight learning needs. For the editorial team and health care professionals, understanding the experiences of people with epilepsy and their families enhances tailoring of information and making sure that critical needs are addressed. A number of these polls highlighted the need for people to have education and resources in developing self-management plans. As with any survey, respondents are those who choose to participate and this type of survey allowed only single questions. Expansion of instapoll technology will allow more formal and extensive asssessments of experiences and needs and to help reach and tailor information and resources appropriately. Supported by Epilepsy Therapy Development Project, a not-for-profit foundation.