The transition from pediatric to adult health care involves multiple people—patients and caregivers, health care providers, administrators and others—working together to support young adults. The process can be complex and marked by differences in available resources and the culture of care, moving from family-centered pediatric care to person-centered adult care.
Despite the importance of these transitions, there is a lack of evidence about best practices or types of interventions that support the transition to adult care—a process that can be highly specific to the local context.
The Transitions in Care (TIC) project is taking a two-pronged approach—combining a qualitative study with a quantitative analysis of administrative health data—to build a picture of the current transition process in Nova Scotia, and better understand the perspectives of patients, caregivers, and health care providers. This collaboration grew out of discussions at the MSSU Nova Scotia Bridge Event in June 2019, and involves stakeholders from Nova Scotia Department of Health and Wellness (DHW), IWK Health, Nova Scotia Health, and Dalhousie University, as well as Patient Partners.
“Through this research, we’re engaging multiple partners—from patients and families to researchers, administrators and clinicians—to build a comprehensive picture of the transition process. This collaborative approach will help to ensure that our research findings reflect the priorities of those involved and can effectively guide the work of the Transition of Care Committee to improve transition across the Maritimes,” said Jacklynn Pidduck, Transition Coordinator at IWK Health and co-lead on both the TIC qualitative and quantitative studies.
Patient Partners, including people who are currently transitioning or previously transferred to adult care, are central to every aspect of the project. Four Patient Partners—two with each study—have shaped the research design, contributed to study protocols and methods, and, going forward, will help with interpreting the data and formulating the findings.
“Transition can be a very difficult process for youth, and without evidence-based standards of practice for transition this can be even more so. I personally had a trying transition, and it has been incredibly meaningful to know that, in the future, youth may have a smoother and more comfortable transition experience because of this research. It is also very empowering to feel as though my voice and patient experiences are of value to a research team,” said Cassidy Bradley, Patient Partner on the TIC quantitative study.
This past year, the team behind the TIC qualitative study presented their study design and integrated knowledge translation approach at both the Canadian Health Services and Policy Research Conference and the Canadian Transitions Hub Pop-up event hosted by Children’s Healthcare Canada, and shared their research partnership experience with the CIHR Health System Impact Fellowship training program. The qualitative team also completed interviews with pediatric and adult health care providers involved in the transition process, and are currently holding focus groups with youth and caregivers who are in the process of transitioning or recently transitioned to adult care.
Meanwhile, the analysis is underway for the Transitions in Care quantitative study, which is co-led by Dr. Amy Grant, MSSU Senior Health Policy Researcher. Using administrative health data, the team are examining patterns of health care utilization for youth with four chronic illnesses and investigating the factors that influence patients’ transition to adult care.
“Together, we are building a better understanding of the transition process – what works and what doesn’t work— which will be key to the next step of developing interventions and resources to support patients and health care providers, and smooth this transition,” said Dr. Christine Cassidy, Assistant Professor, School of Nursing at Dalhousie University, Affiliate Scientist IWK Health and co-lead on the TIC qualitative study.