Background: Digital health technologies (DHTs), including mobile health apps, wearable activity trackers, and telehealth platforms, offer a promising avenue for enhancing the management of Duchenne muscular dystrophy (DMD). While potential benefits for remote monitoring and self-management are frequently hypothesized, there is a significant gap in understanding the real-world experiences, perceived value, and practical challenges faced by DMD patients and their families when integrating these tools into daily life.
Objectives: This study aimed to explore the firsthand experiences of individuals with DMD regarding the use of DHTs. Specific objectives were to: 1) identify the types of DHTs currently used; 2) understand perceived benefits and barriers to adoption; and 3) elucidate the impact of DHTs on self-management, communication with healthcare providers, and overall quality of life.
Results: Four main themes emerged: 1) Empowerment and Enhanced Agency: Participants reported that symptom-tracking apps and wearable data provided concrete evidence for self-advocacy in clinical consultations and helped them recognize personal functional patterns. 2) The Double-Edged Sword of Data: While objective data (e.g., step count, heart rate) was valued for monitoring, it also induced anxiety in some participants, particularly when it highlighted functional decline. 3) Integration Burden: DHTs were often perceived as an additional daily task, with usability issues (e.g., non-accessible interfaces, charging difficulties) and lack of integration with clinical records cited as major barriers. 4) Telehealth as a Lifeline and a Compromise: Video consultations were praised for reducing travel burden but critiqued for the loss of hands-on physical assessment, highlighting a preference for a hybrid care model.
Conclusions: DMD patients actively engage with DHTs, finding value in tools that promote agency and facilitate remote care. However, their adoption is significantly hindered by design inaccessibility, emotional impacts of self-monitoring, and system-level fragmentation. For DHTs to realize their full potential in DMD care, future development must prioritize user-centered co-design, robust data integration, and emotional support frameworks to mitigate monitoring-related distress. These findings advocate for a more holistic and participatory approach to digital health implementation in neuromuscular care.