Online epilepsy counseling in Croatia: What do users want to know?

Purpose: The purpose of this study is to better understand which specific epilepsy-related issues are cause for seeking out professional advice online.

Method: An online epilepsy counseling service introduced by the Croatian Epilepsy Association allows users to anonymously submit questions related to epilepsy via e-mail or online contact form, which are later answered by an epilepsy professional. The questions were classified both by inquirers and by content. Inquirers were classified as patients, patient's parents, family members, partners, and friends of patients with epilepsy. In terms of content, questions were divided into three groups: medical, socially-oriented, and unclassifiable questions.

Results: In sum, 355 e-mails, which included 513 questions, were analyzed. The vast majority of inquirers were patients themselves (48%) and parents of patients (28%). While 76% of questions concerned the medical aspects of epilepsy, there was as well significant interest in administrative and practical issues associated with the diagnosis of epilepsy. Among medical questions, the most popular concerned prognosis (15%) and second opinions (14%); among socially-oriented questions, inquirers were primarily interested in matters associated with their profession (28%). As well, the parents of patients were more likely to question an epilepsy diagnosis than the patients themselves (p<0.001).

Conclusion: According to the results of this study, it is clear that epilepsy professionals should invest more time in discussing with patients the topics which interest them the most, as well as refer them to other professionals that can help them with non-medical epilepsy-related issues, and advise them on reliable Internet sources.