Background: Care coordination (CC) involves a critical, cross-cutting set of activities. In the United States (US), consensus about core
functions and competencies is lacking; ambiguity exists regarding disciplines, outcomes, measures, and financing. Effectively
transitioning care from pediatric to adult systems of care remains a significant challenge.
Objective: Present a newly developed, multidisciplinary framework for CC, including definition, characteristics, competencies, levels,
outcomes, as well as recommendations for future policy, research and education. Look at challenges currently facing youth
with special health care needs attempting to transition to adult systems of care.
Results: Developing a family-centered system of health care requires full engagement of patients, youth, and families in the planning
and implementation process. The CC framework offers strategies including clarification of definition of CC, role descriptions,
characteristics, core competencies, levels of service, and culturally-effective approaches. The framework also details anticipated
outcomes resulting from the experience of receiving and providing highly effective coordination of care. The family-centered
‘medical home’ is highlighted as a hub for community-based CC. Functional relationships and communications are assumed at
points of engagement along the health care continuum and across community partner organizations. The CC framework provides
a structured approach to empower youth with chronic conditions and their families/caregivers to address and overcome some
of the challenges of transitioning care from pediatrics to adult health systems.
Conclusions: To achieve a high performance health care system, it is essential to create, sustain, and measure the performance of an integrated,
consistent CC infrastructure. This is systematically lacking at the present time in the US. Driving this transformation will
be the creation and implementation of multiple elements and promoting factors within the healthcare system and across multiple
sectors of the broader community. These factors will enable effective transitions from pediatric to adult health care systems.
Grateful acknowledgement is made to The Commonwealth Fund and to the US Maternal and Child Health Bureau for partial support of this work. The presenter wants to acknowledge the contributions of Jeanne McAllister, BSN, MS, MHA, Jill Popp, MA and to colleagues at the US Healthy and Ready to Work National Resource Center.