For people living with Duchenne muscular dystrophy (DMD), meaningful physical activity goes far beyond walking, according to a review published recently in Clinical and Translational Science.
This new review of more than 100 qualitative studies showed that patients with DMD and other chronic conditions view physical activity as a vital part of their independence, identity and daily life — not simply a measure of how far or fast they can move.
“This systematic review of qualitative studies reveals, for the first time, the meaningful aspects of PA [physical activity] and contextual factors that promote or limit patient performance of PA in daily life,” said the authors of this review.
The authors identified five meaningful aspects of health related to physical activity across a range of conditions, including DMD: ambulation, balance, upper limb function, changing body position and participation in activities of varying intensity. These findings reflect what patients and care providers say they value most: being able to participate in daily tasks, enjoy social interactions and maintain a sense of autonomy.
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In DMD specifically, the loss of upper body strength and mobility plays a major role in limiting activity. One person with DMD quoted in the review expressed frustration over needing help to retrieve everyday items, saying, “It can get frustrating to have somebody help me every time I need to get something.” Such moments highlight how physical activity is deeply linked to dignity, emotional health, and a desire to continue doing things for oneself, even in small ways.
This review also noted that patients with DMD often experience emotional barriers to activity, such as fear of injury or embarrassment due to physical limitations. Internal feelings of helplessness and physical symptoms, such as fatigue and breathlessness, can reduce the motivation or ability to engage in life’s routines. Still, many find strength in social support and adaptive tools. The authors noted that family encouragement, mobility devices, and even small successes in daily tasks can boost confidence and improve well-being.
Importantly, these findings open the door for more patient-centered approaches in both research and care. By recognizing what types of activity truly matter to people with DMD, digital health tools and therapies can be better designed to reflect real-life goals. This can help researchers, clinicians and caregivers focus not just on disease progression, but on improving quality of life in ways that are personal, meaningful and empowering.
“We also highlight the opportunities to build upon these patient-focused concepts to define a core set of digital measures of PA [physical activity] that can be standardized and applied broadly in both clinical research and care settings that together will enable innovative and patient-centered measurement of physical activity,” concluded the review.
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