The transition from pediatric to adult health care involves multiple stakeholders working together to support young adults to transfer. The term ‘transition’ refers to the process of preparing young adults, their parents or caregivers, and the pediatric and adult care teams for the process of ‘transfer’ to the adult care system. As the culture and resources available from pediatric to adult care differ, the shift from a 'family-centred approach' to a 'person-centred' approach that emphasizes more personal responsibility for health care management can be challenging. As a result of these challenges, the process of transition of care for youth and young adults with complex health care needs into the adult care system was identified as a priority health topic for discussion at the MSSU Nova Scotia Bridge Event in June 2019. A team including researchers, patient partners, decision-makers and health care providers was formed to conduct the research.
About this Project
There is very little evidence around best practice or what types of programs best support the transition to adult care. Additionally, there is a need for local evidence around how this transfer currently takes place and what might support better transition processes for youth, young adults, and care providers. As such, this project aims to better understand current practices and experience of transition. To do this two research teams have been formed to study the transition from pediatric to adult care in Nova Scotia:
- A qualitative research study exploring the current practices and experiences of transition from pediatric to adult care from the perspective of patients, caregivers, and health care providers. Read more about this study.
- A quantitative research study using health administrative data (data collected from encounters within the medical system-collected for medical or billing purposes) to look at health care utilization before and after transition to adult care for youth with chronic conditions. Read more about this study.
The results of this work will help us to better understand how transition to adult care has taken place, what is working well and what isn’t working, and will inform changes in transition care moving forward.
A big piece of both of these studies is our collaboration with clinicians, policy-makers, health administrators and Patient Partners. Patient Partners, including past and present transitioning patients and their caregivers, have been engaged throughout this project, from the conception and shaping of the research questions being studied, to shaping the methods and developing the protocol for the studies. Patients will continue to be involved in the different stages of the study, from helping to interpret the data, to forming conclusions based on the results.
Elizabeth Jeffers, MSc, Research Project Manager, MSSU