Mother helps son into a wheelchair

A Better Life for Children with Duchenne Muscular Dystrophy

Duchenne muscular dystrophy (DMD) is a devastating genetic disease that affects young boys, causing progressive muscle weakness and loss of function. Despite the physical challenges this disease poses, a recent study by Bendixen, R. M. et al.1 sheds light on the participation levels and quality of life of children with DMD. The findings offer hope and insights for families navigating this difficult journey. 

Participation levels

The study, conducted by researchers at the University of Florida, compared participation in various activities between boys with DMD and their unaffected peers. They found that while boys with DMD engaged in fewer physical activities, their participation in recreational and social activities was similar to their healthy counterparts. However, as the boys with DMD grew older, their participation in social activities and the amount of time spent engaging in activities declined. This highlights the importance of supporting children with DMD in maintaining social connections and finding enjoyable activities as they navigate the progression of their disease. 

Quality of life

One of the most significant findings of the study was the impact of DMD on the perceived quality of life of children. Boys with DMD reported markedly lower quality of life scores compared to unaffected boys, except in the emotional domain. This underscores the emotional resilience and positive outlook that many children with DMD demonstrate, despite the physical challenges they face. 

Importance of participation and quality of life

The researchers emphasize the value of examining broader components of health, as emphasized by the International Classification of Functioning, Disability, and Health-Children and Youth Version (ICF-CY)2. By focusing not only on physical measures, but also on participation and quality of life, healthcare providers can better understand the holistic impact of DMD on children and their families. This knowledge can inform the development of interventions and support systems that address the unique needs and experiences of children with DMD. 

Looking ahead

As researchers continue to explore new treatments and therapies for DMD, it’s crucial to consider the impact on participation and quality of life. By prioritizing these important outcomes, healthcare providers can ensure that children with DMD and their families have the support and resources they need to thrive, both physically and emotionally. 

This study provides valuable insights into the participation levels and quality of life of children with DMD. By understanding the unique challenges and strengths of these children, a greater effort can be made to create a more inclusive and supportive environment that empowers the children to live life to the fullest. 

1 Bendixen, R. M., Senesac, C., Lott, D. J., & Vandenborne, K. (2012). “Participation and quality of life in children with Duchenne muscular dystrophy using the International Classification of Functioning, Disability, and Health.” Health and Quality of Life Outcomes, 10(1), 43.

2 International Classification of Functioning, Disability, and Health-Children and Youth Version. https://www.cdc.gov/nchs/data/icd/icfoverview_finalforwho10sept.pdf

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