{"id":15944,"date":"2024-08-29T07:00:00","date_gmt":"2024-08-29T11:00:00","guid":{"rendered":"https:\/\/www.ptcbio.com\/?p=15944"},"modified":"2026-02-17T15:33:39","modified_gmt":"2026-02-17T20:33:39","slug":"improving-the-transition-from-pediatric-to-adult-care-in-duchenne","status":"publish","type":"post","link":"https:\/\/www.ptcbio.com\/posts\/improving-the-transition-from-pediatric-to-adult-care-in-duchenne\/","title":{"rendered":"Improving the Transition from Pediatric to Adult Care in Duchenne"},"content":{"rendered":"\n
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PTC research highlights opportunities to improve the transition experience for young adults living with Duchenne<\/em><\/strong><\/p>\n\n\n\n

In 2023, PTC supported a research project conducted by a patient-focused consultancy Redline Strategic exploring the experience for teenagers, young adults and caregivers living with Duchenne muscular dystrophy (Duchenne) as they transition from pediatric care to adult care.<\/p>\n\n\n\n

The research gathered valuable insights from participants living with Duchenne across nine European countries and highlights opportunities to improve the transition experience for young adults.<\/p>\n\n\n\n

Sian O\u2019Neill, Senior Director, Patient Engagement (PE)- EMEA APAC, and Luke Millington, PE Specialist, together with Maureen Mason, Senior Area Business Manager \u2013 Ireland, share the learnings and drivers for improving the transition experience for young adults living with Duchenne.<\/p>\n\n\n\n

Why was the research conducted?<\/strong><\/p>\n\n\n\n

Sian:<\/strong> Over the past decades, life expectancy of individuals affected by Duchenne has increased significantly, and this in turn creates new challenges and opportunities. As a teenager becomes a young adult, their healthcare needs and personal interests may change. Without proper planning for the future, transition may be a confusing time, and quality of care may be interrupted and impacted as a young adult moves from a pediatric care setting to an adult care setting.  <\/p>\n\n\n\n

The research project specifically aimed to understand transition experiences and perspectives from young adults living with Duchenne and their caregivers, how they personally think and feel about these changes, barriers they face and needs they have.<\/p>\n\n\n\n

What did the research reveal?<\/strong><\/p>\n\n\n\n

Luke:<\/strong> The research uncovered several barriers that can make transition challenging. In most countries, there is no standardized transition process in place, leaving families to figure out the transition journey for themselves. Lack of time, lack of resources and lack of proper planning, as well as the perception of Duchenne itself, can all further impact transition. A lack of mental health support was also highlighted.<\/p>\n\n\n\n

Now that the research has been completed, what\u2019s next?<\/strong><\/p>\n\n\n\n

Maureen:<\/strong> The research has provided valuable insights into the barriers and drivers of transition. Through close collaboration with patient organizations, we have enriched our research and identified opportunities to improve the transition experience across countries. These are:           <\/p>\n\n\n\n