Systems and Standards Journal Articles
March 1, 2022

Research Agenda for Implementation of Principles of Care for Children and Youth With Special Health Care Needs

By: Dennis Z. Kuo, Jennifer Lail, Meg Comeau, Emily Chesnut, Alissa Meyers, Ricardo Mosquera

Children and youth with special health care needs (CYSHCN) have a range of medical, educational, and support service needs to achieve optimal health and wellness. Principles of care for CYSHCN have been well described, but the literature is lacking particularly on implementation and integration of care across different settings and systems. The authors identify four primary areas of investigation that could further understanding of how to adopt and spread principles of care for CYSHCN:

  1. Family partner roles within and across systems
  2. Life course approach for CYSHCN
  3. Roles and training of interdisciplinary team members
  4. Implementation, spread, and sustainability studies

To investigate these areas, the authors recommend the use of implementation science and comparative effectiveness research methods.  A common set of metrics including health care utilization, clinical outcomes, and family and provider needs should also be considered to evaluate implementation of the principles of care.

This article is part of a supplement to Academic Pediatrics that outlines a national health systems research agenda for CYSHCN. Learn more about the supplement and access all the articles.