P.056 Survey of Canadian myotonic dystrophy patients’ access to computer technology

Abstract

Background: Myotonic dystrophy is an autosomal dominant condition affecting distal hand strength, energy and cognition. There is a neuromuscular patient portal under development that has the potential to give voices and resource access to patients, regardless of location via the internet and social media. The current state of access to technology and underlying factors affecting use and interest were explored. Methods: Surveys were mailed to 156 participants with myotonic dystrophy type 1 (DM1) through the Canadian Neuromuscular Disease Registry. The survey questions touched on demographics, technology use, internet use, and interest in the portal. Results: Seventy-two participants (43 female) responded so far and 50% were younger than 46 years. Most (62/72) used the internet and 94% of participants had access to an internet-connected device. Almost half of the responders (34/72) used social media. The complexity and cost of technology were commonly cited reasons not to use technology. The majority of responders (79%) were interested in a myotonic dystrophy patient portal. Conclusions: DM1 patients have access to and use technology such as computers and mobile phones. They expressed interest in a portal that would provide them with access to relevant information such as guidelines, self-management modules, educational videos, and support groups.