National Research Agenda

A National Research Agenda for Children and Youth with Special Health Care Needs

Children and youth with special health care needs (CYSHCN) require services beyond what is typical for pediatric patients. However, the current system is not fully equipped to meet their needs. This puts CYSHCN at risk for chronic physical, developmental, behavioral, and emotional conditions. 

There is a lot of research being done in the U.S. and beyond to improve health systems for CYSHCN. However, health outcomes have not improved. Projects are often small, cover a wide range of topics, and are not well-coordinated. To promote higher-impact research to improve the health and well-being of CYSHCN, researchers from the CYSHCNet network received input from more than 800 stakeholders to develop a coordinated national research agenda on health systems. 

The agenda:

  • Highlights important health system challenges faced by key stakeholders (e.g., patients and families, health care providers, insurers, administrators, etc.); 
  • Organizes research topics and goals to identify opportunities for high-impact research, to address system challenges and to promote progress toward improved health outcomes; and 
  • Provides examples of potential studies to fill research gaps that will guide CYSHCN investigators and other stakeholders moving forward.

Abstract and Background

Below is a video abstract by Dr. Ryan Coller, who highlights the rationale behind the creation of the National Research Agenda, the process behind defining key priority research areas and a summary of the six suggested sub-topics for future research. 

Read the full paper, published in the Journal of the American Academy of Pediatrics and  download the Project Brief.

Priority Areas & Research Topics

Child Health
Family Health
Caregiving for CYSHCN
Care Models
  • Research Agenda for Implementation of Principles of Care for Children and Youth With Special Health Care Needs
  • What are “key ingredients” of successful CYSHCN care models (care plans, crisis planning, behavioral health, social work, navigators, coaches, etc)? How can they be disseminated and implemented most efficiently?
  • How can interdisciplinary teams (including families) divide labor and co-management for CYSHCN most effectively?
  • What are the most effective integrated health system models and how can they be disseminated?
  • How can palliative care principles be integrated into routine CYSHCN care, and what is the impact?
  • How can the education and health systems better integrate to improve CYSHCN health outcomes?
  • What are the domains and metrics that should be used to assess CYSHCN systems of care (reflecting consensus across stakeholder groups)?
Health Financing
Youth-Adult Transitions
  • Transitions from Youth to Adult Care
  • What are the best models to accomplish youth-adult transition planning? How might this translate to other transitions (e.g., to new providers, new settings, new schools, etc)?
  • How do gaps in insurance and community supports during early adulthood effect CYSHCN health outcomes, and how can they be reduced?