Focusing on the Needs of Young Adults

Medical appointments for adults living with Duchenne & Becker can look very different than the care they receive as pediatric patients. At the Certified Duchenne Care Center at Children’s Hospital of Richmond at VCU, the neuromuscular team recognized that older individuals needed a tailored care approach to meet the unique needs of young adults. To this end, they established their Young Adult Clinic.

As part of this clinic, established patients with Duchenne continue to follow up with the multidisciplinary neuromuscular team with additional focus on palliative care, social work, and local resources specific to teens and adults. A male social worker and palliative care physician attends this clinic to encourage individuals to share what is most important to them and provide support to meet their interests and goals. This includes sharing resources that support daily living as an adult.

Additionally, PPMD’s Adult Advisory Committee (PAAC) President, Colin Werth, attends this clinic as a patient advocate for young adults. He provides a 1:1 non-provider perspective for discussing transitions from pediatric to adult care and strategies to enhance adult care. During each clinic, 4-5 young adults will gather together before seeing the rest of the medical team to connect and share experiences, as a way to build community and peer engagement.

“It is great to have a clinic that supports the core mission of the PAAC – to elevate the lives of individuals living with Duchenne and Becker through mentorship, outreach, and education” says Werth. “This is a holistic approach that all CDCC’s should be following. It is especially important to make sure patients are getting the mental health care and resources they need to live their best lives.”

In addition to general social support, patients continue to receive comprehensive and coordinated care with necessary subspecialists. While continuing to receive care under VCU team’s leadership, adult patients are also able to stay informed and up-to-date with Duchenne specific studies.

PPMD is grateful for the efforts and focus of adult needs provided by Dr. Amy Harper, director of Children’s Hospital of Richmond at VCU’s CDCC as well as the entire team. For more information about this clinic, visit the PPMD website or email careteam@parentprojectmd.org.