Project: Understanding the transition perspectives of young men with DMD as they transition to adult care

Centre for Leadership in Child Development

Project: Understanding the transition perspectives of young men with DMD as they transition to adult care

Investigators:

What was this study about?

Young adults with disabilities are often under-serviced in health care as they transition to adulthood. Such gaps in the system are concerning because they are linked with poorer long-term health outcomes, increased hospitalizations and reduced opportunities to participate in the community. Although there is a growing literature on transitions to adult care, youth with Duchenne Muscular Dystrophy (DMD) have been neglected.

Exploring this population is important because they live well into adulthood and have different needs than other clinical groups. DMD is often seen as a pediatric disease and therefore not associated with transition planning. Scientists and clinicians from Holland Bloorview explored the experiences of young adults with DMD, their families and clinicians as they transitioned to adult health care.

What did we do?

We conducted and recorded interviews with 16 participants (7 clinicians, 5 parents and 4 young men with DMD) about the enablers and barriers encountered while transitioning to adult health care.

Impact for clients, families and clinical practice

This study can help guide ongoing efforts to enhance transition pathways for young men with DMD as they move towards adult health care.

Young men with DMD and their caregivers reported several enablers including structural factors (i.e., leadership and advocacy), availability of care (i.e., inter-agency partnerships, teamwork), and relational factors (i.e., effective communication and family involvement).

Barriers that influenced the transition included lack of clarity around the timing, differences in models of care between pediatric and adult health care, and readiness to transition. Understanding the perspectives of young adults and clinicians is important for transition programming.

What did we learn?

  • Leadership, advocacy and the development of an inter-agency partnership between the pediatric hospital and the adult health care center enabled the transition of the adult clinic to take place.
  • Effective communication between the pediatric hospital and the adult health care center and multi-disciplinary collaboration within the pediatric clinic was essential to the transition.
  • There were several challenges with the timing of the transition of the young men with DMD to the adult health care center.
  • There is a lack of community supports, social, educational and vocational resources for young men with DMD in the adult system.
  • There is a need for more adult-oriented occupational therapy, physiotherapy, access to x-rays and support for relationships and depression.
  • Encouraging self-care and independence may be inappropriate for young men with DMD as they enter adolescence and their condition is deteriorating and need to rely on others for support.

Next steps

The team will be giving several presentations at academic conferences and also to clinical and non-clinical audiences. Our findings have also been submitted for a peer-reviewed publication. Our team is continuing to explore transition pathways for youth with DMD and other neuromuscular disorders with Phase 2 funding for our work.