Grant: Planning and Dissemination Grant - Institute Community Support

Scoliosis is an abnormal curvature of the spine that affects patients their entire lives. Patients who develop this disease as children are often diagnosed and treated first in a pediatric hospital. However, they will all eventually become adults and this creates a period of uncertainty. These people with lived experience of their disease may have challenges in obtaining the same care into adulthood. Health care systems may not be adequately adapted to carry on lifelong care for these patients. This research proposal aims to address this problem of uncertainty in this transition period. We ultimately aim to empower patients by involving them in the development of a future transition program to bridge the gap in pediatric to adult scoliosis care. Several initiatives will be supported in this proposal. First, we will determine the research priorities and needs for this population of people with lived experience by recruiting patient-partners in the development and planning of our research work. This will be essential for our research to be directly relevant to the users of the developed care program. We will conduct a literature synthesis of what has currently been described for transitional care in pediatric surgical specialties. This will help plan and identify the needs expressed in the scientific literature. We will then organize a meeting combining both experts and people with lived experience to establish the first consensus on how we should prepare, manage and treat this patient population ageing into adulthood. We will then present our works in both local, national and international conferences to help disseminate the results of this research. This will help build a network of researchers, experts and patient advisors in this new field. This research proposal will help plan the next steps of our research goals and lay the foundation for the future research program.