Project Summary

Importance of this topic
Nearly one in five children in the United States (almost 14 million) are children and youth with special healthcare needs (CYSHCN). CYSHCN have chronic conditions (e.g., seizures, lung disease, developmental disabilities) that require intensive support from health services, families and a complex network of providers. Because of these special needs, CYSHCN often require hospital care. After a hospital stay the transition back to home can be risky. For example, many CYSHCN and their families have trouble accessing follow-up care or medications and many are readmitted to the hospital shortly after discharge. Improving the quality and safety of hospital-to-home transitions is a priority for CYSHCN and families, clinicians and health systems. 

What has been studied before and what this study will be about 
Past studies have shown the benefits of different ways of caring for patients during transitions from hospital back to home. However, there have not been studies directly comparing promising ways to provide hospital-to-home transitional care. There have also not been studies of hospital-to-home transitional care specifically for CYSHCN. 

To address this knowledge gap and learn how best to support CYSHCN, this study will compare two types of hospital-to-home transitional care for CYSHCN: 

  • A focused dose of transitional care consisting of a single phone call from a nurse care coordinator within three days of hospital discharge 
  • An extended dose of transition care consisting of a phone call followed by weekly phone calls by a nurse transition coach for one month after hospital discharge 

All calls in both groups will be structured so that helpful supports are provided during each call – for example, medication review, parent/family education and scheduling follow-up care. 

What the research team will be doing 
The three aims of this study are to: 

  • Compare two types of hospital-to-home transitional care—focused dose versus extended dose—to see which type of transitional care helps most for decreasing return visits to the hospital or emergency department (ED) and for increasing parent-reported confidence 
  • Compare how well each type of hospital-to-home transitional care could help CYSHCN patient groups who experience unequal health outcomes (e.g., CYSHCN with high clinical complexity needs and CYSHCN from racial and ethnic minority groups or living in rural areas) 
  • Evaluate the way that hospital-to-home transitional care was provided to learn how and why each approach worked Adult parents/caregivers of children under 18 years old who are in the hospital, will return to home after hospital discharge and have seen multiple specialty providers in the year before this hospital visit will be eligible for the study. The team will assign CYSHCN and their parent/caregiver by chance to receive either the focused dose or extended dose of hospital-to-home transitional care. Over three months after discharge, the team will compare hospital and ED use, caregiver confidence, caregiver strain, completed clinic visits, days spent at home, caregiver quality of life, quality of transitional care and overall health status. These study outcomes will be measured using both surveys and electronic health record data. 

Who will partner with the research team and who this research will help 
The study team will engage with multiple community partners from across North Carolina and beyond. These partners will include parents and caregivers with lived experience caring for CYSHCN, clinicians, policy makers, and health system leaders. The team will form a community advisory board consisting primarily of a diverse group of parents/caregivers of CYSHCN from across the state who will regularly work with the team during the study. Clinicians and health systems can use findings from this study to understand which form of hospital-to-home transitional care works best for CYSHCN. They will also better understand which vulnerable CYSHCN patient groups might benefit most. Together, these new learnings will help to equitably improve the overall care for all CYSHCN as they transition from hospital back to home.

Project Information

David Ming, MD
Duke University

Key Dates

60 months


Award Type
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 15, 2024