Use of the DISCERN tool for evaluating web searches in childhood epilepsy

Highlights

• Internet is one of the most common health information sources.

• Evaluation of websites by pediatric neurologists and by a neutral subject using the DISCERN tool

• Online searches concerning childhood epilepsy are not yet completely reliable.

• Sites lack good relevance, description of treatment options, and accuracy of data.

Abstract

Epilepsy is an important cause of neurological disability in children. Nowadays, an increasing number of parents or caregivers use the Internet as a source of health information concerning symptoms, therapy, and prognosis of epilepsy occurring during childhood. Therefore, high-quality websites are necessary to satisfy this request. Using the DISCERN tool, we evaluated online information on childhood epilepsy provided by the first 50 links displayed on the Google search engine. The same links were evaluated by a team of pediatric neurologists (PNs) and by a lay subject (LS).

The evaluation performed by the PNs found out that only 9.6% of the websites showed good reliability, that only 7.2% of the websites had a good quality of information on treatment choices, and that only 21.5% of the websites showed good overall quality of the content. With regard to the evaluation performed by the neutral subject, it was found that 21.4% of the websites showed good reliability, that 59.5% of the websites showed poor quality of information on treatment choices, and that only 2% of the websites showed good overall quality of the content.

Our conclusion is that online information about childhood epilepsy still lacks reliability, accuracy, and relevance as well as fails to provide a thorough review of treatment choices.

Introduction

Epileptic syndromes are an important cause of neurological morbidity in children. The incidence of epilepsy is approximately 5–7 cases per 10,000 children from birth to 15 years of age, and in any given year, about 5 of every 1000 children will have epilepsy [1]. (See Table 1, Table 2.)

An increasing proportion of patients with chronic diseases, such as epilepsy, and the people who help care for them (parents/caregivers) use the Internet as a source of health information. The advantages of the Internet as a source of health information include convenient access to a massive volume of information, ease of updating information, and the potential for interactive formats that promote understanding and retention of information. Health information on the Internet can make patients better informed, leading to better health outcomes, more appropriate use of health service resources, and a stronger physician–patient relationship [2]. However, health information on the Internet may be misleading or misinterpreted, thereby compromising health behavior and health outcomes or resulting in inappropriate requests for clinical interventions.

The Internet has become a major source of health information about various aspects of epilepsy diagnosis and management. In chronic diseases, such as epilepsy, self-management is essential; thus, a good quality webpage should provide necessary and comprehensive information on childhood epilepsy so as to establish clarity in options and compliance. On the contrary, modest quality of information can induce bias and poor follow-up.

The aims of this study were to evaluate and to analyze the quality of web information about childhood epilepsy and its treatment in English-speaking countries in order to identify shortcomings and recommend changes in online health resources for childhood epilepsy.