Evidence Based Strategies: Transition of Care

Summertime marks a season of transition for pediatric patients. Those in school are enjoying the weather while the next academic year looms, and others are stepping out of high school into adulthood. It’s a fitting time for clinicians to reflect on another critical transition: the often-fragmented transfer of these patients from pediatric to adult health care. During this process, children with or without medical complexity are frequently lost to the health care system. 

This inevitable transition to adult care affects children across all subspecialties and settings of care. Each year, an estimated 1 million children with special health care needs will move to adult care. This process most often occurs between the ages of 21 and 23, well beyond the range of 18-21 recommended by the American Academy of Pediatrics (AAP).¹ On top of this delay, many patients face a gap in care lasting over a year. Evidence continues to support existing standardized tools of health care transition that are ready to be adopted to help these children transition effectively into adulthood. 

Finding solutions to address this discrepancy has been an identified need for over two decades. This need was highlighted in a 2002 joint policy statement by the AAP, American Academy of Family Physicians, and American College of Physicians. Subsequently, they released joint clinical reports in 2011 and 2018, identifying the “Six Core Elements of Health Care Transition”² to outline tools for the standardization of this process. The process is outlined below:

1. Creating a Transition and Care Policy/Guide to be shared with the patient and their family.
2. Tracking and Monitoring to ensure the individual is receiving each component. 
3. Completing a standardized Transition Readiness Assessment (TRA) starting at age 14-16.
4. Transition Planning including selecting an adult physician, building health literacy/independent self-care skills, and preparing for changes that happen at age 18. 
5. Transfer of Care to the adult provider, recommended to happen before the age of 22, including communication and coordination with the adult physician. 
6. Transfer Completion with the recommendation to offer pediatric consultation and assess experience and satisfaction with transition supports.

Unfortunately, the number of adolescents receiving these appropriate interventions remains well below national standards (under 50%).^3,4 Notably, there are decreased odds of receiving this information for non-white youths or in households without English or Spanish as a primary language.⁴ Many large pediatric health care systems have begun to adopt this standardized system of health care transition to improve these metrics. A 2023 study identified the results of a system-wide implementation at Children’s Mercy Kansas City that led to an increase in completion of the above assessments, documentation of discussions, and ultimately transfer orders to adult care.⁵ As more institutions adopt these measures, studies show the percentage of children receiving transition preparation can increase as much as 50%-100% over several years.⁴

These efforts don’t just improve documentation or discussion, they translate into measurable improvements in patient outcomes. Several studies indicate fewer hospitalizations, improved adherence to prescribed treatment, and consistent follow-up with adult providers.⁶ These outcomes are especially evident with directed interventions toward the most vulnerable populations, such as children with special health care needs, like those with type 1 diabetes and sickle cell disease. Helping children bridge the gap to adult care with thoughtful, early interventions is how we ensure a future of healthier, more independent adults. 

For patient and family resources, visit the Children’s Mercy patient and family page for transition to adult care. For guidance on implementation of health care transition services, including sample tools and implementation guidelines for the six steps listed above, visit ​​gottransition.org. 

References:

1. Wisk LE, Finkelstein JA, Sawicki GS, et al. Predictors of timing of transfer from pediatric- to adult-focused primary care. JAMA Pediatr. 2015;169(6):e150951. doi:10.1001/jamapediatrics.2015.0951
2. White PH, Cooley WC. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2018;142(5):e20182587. doi:10.1542/peds.2018-2587 
3. Dwyer-Matzky K, Blatt A, Asselin BL, Wood DL. Lack of preparedness for pediatric to adult-oriented health care transition in hospitalized adolescents and young adults. Acad Pediatr. 2018;18(1):102-110. doi:10.1016/j.acap.2017.07.008 
4. Javalkar K, Nazareth M, Diaz-Gonzalez de Ferris ME. Trends and disparities in health care transition preparation from 2016 to 2019: findings from the US National Survey of Children’s Health. J Pediatr. 2022;247:95-101. doi:10.1016/j.jpeds.2022.05.027 
5. Hickam T, Maddux MH, Modrcin A, White P. Outcomes of a structured ambulatory care health care transition approach in a large children’s hospital. J Adolesc Health. 2023;73(5):917-923. doi:10.1016/j.jadohealth.2023.06.005 
6. Gabriel P, McManus M, Rogers K, White P. Outcome evidence for structured pediatric to adult health care transition interventions: a systematic review. J Pediatr. 2017;188:236-269. doi:10.1016/j.jpeds.2017.05.066