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Survey of Canadian Myotonic Dystrophy Patients' Access to Computer Technology
Seth A Climans1, Christine Piechowicz2, Wilma J Koopman2
11Schulich School of Medicine & Dentistry,Western University,London,Ontario,Canada.
Summary
Individuals with myotonic dystrophy (DM1) use technology and are interested in an online patient portal for resources and connection. Barriers like complexity and cost exist but do not deter portal interest.
Area of Science:
- Neurology
- Biomedical Informatics
- Patient Advocacy
Background:
- Myotonic dystrophy type 1 (DM1) is a genetic disorder impacting strength, energy, and cognition.
- Patients and families increasingly seek health information online.
- An online portal could enhance resource access and peer support for DM1 patients.
Purpose of the Study:
- To assess technology use among individuals with DM1.
- To identify potential barriers to technology access.
- To gauge interest in a dedicated DM1 patient portal.
Main Methods:
- A survey was mailed to 156 participants with DM1 from the Canadian Neuromuscular Disease Registry.
- Participant responses were analyzed to characterize technology usage and portal interest.
Main Results:
- 84% of respondents use the internet, and 47% use social media.
- Common barriers to technology use include complexity and cost.
- A significant majority (76%) expressed interest in a DM1 patient portal.
Conclusions:
- DM1 patients in a Canadian registry demonstrate significant technology adoption.
- A patient portal is desired for networking and accessing disease-specific information.
- Addressing technology barriers may improve access to digital health resources for DM1 patients.
