For individuals with Duchenne muscular dystrophy (DMD) or Becker muscular dystrophy (BMD), transitioning to adulthood often presents significant challenges, particularly in daily living and employment, according to results from a study published recently in PLOS One.
This study examining 42 men with DMD or BMD found that more than half required support in education and employment (52.5%) and activities of daily living (57.0%). Notably, assistance with palliative care (66.6%), employment and education support (76.1%), housing assistance from a social worker (76.1%), and consultations for assistive devices (64.2%) were among the most frequently reported needs.
Interestingly, neither limitations with mobility nor breathing function significantly impacted an individual’s ability to transition to independence. Instead, the number of siblings emerged as the strongest predictor of readiness for transition. Participants with more siblings tended to report higher preparedness in most areas of adulthood, including health care, education and daily living tasks. Older age was only associated with greater readiness in education and employment, suggesting that time alone does not necessarily improve transition outcomes.
“The current study also yielded some unique findings, such as the null association of the level of motor and respiratory disability on transition outcomes, and the significance of sociodemographic factors like the number of siblings,” the authors wrote. “These results may be relevant for professionals aiming to develop training programs to facilitate the transition of people with DMD or BMD to new adult roles and responsibilities.”
Read more about the prognosis of DMD
This study highlighted that a considerable number of participants had not yet completed critical transition tasks. For example, only 23.8% had reached out to employment or educational support groups, and just 40.4% had started planning their post-education housing. In addition, while many had evaluated their home’s accessibility (78.5%) and discussed transportation needs (80.9%), fewer had received guidance on hiring personal care aides (35.7%) or using assistive technology (35.7%).
Despite the significant hurdles in education and employment, many individuals living with DMD or BMD reported a strong readiness for independent life and autonomy. More than two-thirds had completed key tasks in this domain, such as decision-making and managing personal responsibilities. However, gaps in support services suggest that many adults with DMD/BMD are left navigating crucial aspects of independence without adequate resources.
These results emphasize the need for more comprehensive planning for transition that extends beyond medical care. While healthcare transitions are often prioritized, the researchers stated this data underscores that assistance with employment, housing, and daily living is equally vital. Without targeted interventions, many individuals with DMD/BMD may struggle to fully integrate into adult life, limiting their opportunities for independence.
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