Abstract
The Internet and use of social media is an important means of communication and an unique source for information gathering in today’s modern society. More than ever, parents and caregivers turn to online sources to get information about their children’s health. Approximately 83% of parents undergoing a genetic evaluation searched the internet for information. However, there is minimal research that examines parental or caregiver internet use in rare disease populations. In our study, we surveyed parents who have a child affected with Duchenne Muscular Dystrophy (DMD) or Becker Muscular Dystrophy (BMD). We employed a mostly quantitative survey with some qualitative components, and recruited online and in person. We found that all parents searched online for information primarily before diagnosis (25.3%), or immediately after (70.9%). Around half of parents were not given internet resources at diagnosis (51.3%), and most of this group reported that this would have been helpful for them (87.5%). More parents reported experiencing barriers such as being unsure on which resources to trust if they were not provided with internet resources at diagnosis. Participants reported the highest rated scores for satisfaction with readability, amount of information and quality of information for Parent Project MD. Majority of respondents felt that searching online was overwhelming (77.3%) and themes for why included amount of information, the emotion tied with the prognosis, and because of outdated information and misinformation. Most participants reported that information found online changed medical management (60.5%) for their child. Overall, we believe this work provides further clarity into the online experience of parents in a rare disease population, and highlights and reinforces the need for providing internet resources at diagnosis. We think this work provides the foundation for future development of best practice guidelines for websites.