Blog: Family Connections with Pediatrics
A high-quality health care transition process for young people with chronic health conditions ensures that they can manage their health as they move from pediatric to adult health care. It can be confusing that there is no single set of guidelines that defines a high-quality health care transition. Understanding how health care transition should work for young people, their families, and their doctors requires that they all plan and work together for a smooth transition.
This month, Pediatrics is publishing an article focused on health care transition and how to make sure it is successful. “Quality Indicators for Youth Transitioning to Adult Care: A Systematic Review” is a review written by Toulany et al of the research on what makes health care transition successful, in general and for specific conditions (10.1542/peds.2021-055033). The authors’ goal was to learn about transition benchmarks or data that can help measure the success of health care transition, no matter what health issues a child has or where they live.
“Defining A High-Quality Transition for Youth with Intellectual and Developmental Disabilities” is an accompanying commentary to this interesting review article written by Hart et al (10.1542/peds.2022-057310). The commentary authors suggest that the needs and expectations of youth with intellectual and developmental disabilities must also be included in the way we rate the success of health care transition processes.
What are some important take-aways from the articles?
Both the article and commentary highlight actions and activities that create a safe and healthy transition to adult care, like family involvement and finding out what steps should be taken by all young people and their doctors. They also discuss some of the gaps in what has been studied about successful health care transition.
- The health care transition needs of young adults with intellectual and developmental disabilities and mental health conditions need further study.
- Race, ethnicity, sexual orientation, primary language, and socioeconomic status have not been the focus of this research. Without this research, the unique needs and experiences of youth who are minority or have fewer resources are not included in the recommendations for a high-quality health care transition process.
- Health care transition processes that don’t consider social determinants of health (like safe housing, work, and access to care) may leave out important actions that can affect health and health care transition.
What can you do with these articles?
- Talk to your child’s doctors. If your child has a chronic condition, you should start talking about health care transition as early as age 12. This can give you, your child, and your child’s doctors time to figure out what resources your child will need to move into adult health care smoothly. Your health care system and doctors might already have processes, policies, or ideas to get you started.
- Read and reflect. Young people and families of color are rarely included in the development of ways to rate health care transition. This means their perspectives about the challenges of health care transition are likely missing from the recommendations. You and your child may need to be vocal about your needs during transition, especially if you belong to a traditionally under-served group. This can help you, your child, and your child’s doctors come up with a plan that works for your child’s unique needs.
- If you’re looking for ways to get started with health care transition, Got Transition® has tools for young people, parents and caregivers, and doctors. You and your child can take a short quiz to see whether your child is ready for health care transition. Other tools include a health care transition timeline and questions to ask your child’s doctor, so you can keep the process moving forward.
- Family Voicesi, in partnership with Got Transition®, University of Missouri Kansas City, the Waisman Center, and SPAN Parent Advocacy Network, is leading a project to empower youth and young adults ages 12-26 with intellectual/developmental disabilities and their caregivers/families to manage health care transitions with no reduction in quality of care or gaps in service. The project will create a youth-driven national health care transition resource center and will help youth to direct their own transition from pediatric to adult models of care. This project is funded by the Administration for Community Living (ACL).
iNikki Montgomery is a Program Manager at Family Voices, Inc. and serves as the project director for this ACL-funded project.