Perspectives of the adolescent and young adults with chronic bone conditions and general practitioners in the transition from paediatric to adult healthcare

This thesis explores the current context of transition from paediatric to adult healthcare for individuals with chronic conditions, and specifically chronic bone disorders. The current Australian context for transition is explored, while drawing upon perspectives from the published literature in best practice of transition.

To explore this, a a survey-based study of adolescents and young adults, and general practitioners was completed. This is the first report surveying both GP and adolescent and young adults with chronic bone dysplasia about their experiences and beliefs regarding the transition process from paediatric to adult medicine in Australia, demonstrating that current practices are sub-optimal for both patients and GPs. A protocol for a focus-group study to address the next steps in research in this area is proposed.

To ensure the engagement of all key stakeholders, research should focus on surveying the experiences and beliefs of the paediatric multidisciplinary team, treating adult specialists with an interest in chronic bone dysplasia and adults with chronic bone dysplasia is required. Incorporating the experiences and beliefs of everyone involved with chronic bone dysplasia will allow for an optimal transition programme to be developed. In so doing, the fallout rate of adolescents and young adults being followed up and the prevention of later complications may be reduced.