Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system.

Discourse about childhood chronic conditions has transitioned in the last decade from focusing primarily on broad groups of children with special health care needs to concentrating in large part on smaller groups of children with medical complexity (CMC). Although a variety of definitions have been applied, the term CMC has most commonly been defined as children and youth with serious chronic conditions, substantial functional limitations, increased health and other service needs, and increased health care costs. The increasing attention paid to CMC has occurred because these children are growing in impact, represent a disproportionate share of health system costs, and require policy and programmatic interventions that differ in many ways from broader groups of children with special health care needs. But will this change in focus lead to meaningful changes in outcomes for children with serious chronic diseases, or is the pediatric community simply adopting terminology with resonance in adult-focused health systems? In this article, we will explore the implications of the rapid emergence of pediatric complex care in child health services practice and research. As an emerging field, pediatric care systems should thoughtfully and rapidly develop evidence-based solutions to the new challenges of caring for CMC, including (1) clearer definitions of the target population, (2) a more appropriate incorporation of components of care that occur outside of hospitals, and (3) a more comprehensive outcomes measurement framework, including the recognition of potential limitations of cost containment as a target for improved care for CMC.

Primary care medical homes may improve health outcomes for children with special healthcare needs (CSHCN), by improving care coordination. However, community-based primary care practices may be challenged to deliver comprehensive care coordination to complex subsets of CSHCN such as children with medical complexity (CMC). Linking a tertiary care center with the community may achieve cost effective and high quality care for CMC. The objective of this study was to evaluate the outcomes of community-based complex care clinics integrated with a tertiary care center.

Children with medical complexity (CMC) are a subset of children and youth with special health care needs with high resource use and health care costs. Novel care delivery models in which care coordination and other services to CMC are provided are a focus of national and local health care and policy initiatives. Current models of care for CMC can be grouped into 3 main categories: (1) primary care–centered models, (2) consultative- or comanagement-centered models, and (3) episode-based models. Each model has unique advantages and disadvantages. Evaluations of these models have demonstrated positive outcomes, but most studies have limited generalizability for broader populations of CMC. A lack of standardized outcomes and population definitions for CMC hinders assessment of the comparative effectiveness of different models of care and identification of which components of the models lead to positive outcomes. Ongoing challenges include inadequate support for family caregivers and threats to the sustainability of models of care. Collaboration among key stakeholders (patients, families, providers, payers, and policy makers) is needed to address the gaps in care and create best practice guidelines to ensure the delivery of high-value care for CMC.

The burden of chronic disease is placing pressure on the Canadian health care system. A small but important chronic disease population is children with medical complexity, defined as individuals with: high family-identified needs; complex chronic disease necessitating specialized care; functional disability; and high health care utilization. These patients present a challenge to community providers who are expected to provide holistic care and manage complex issues, often with a paucity of services and supports. Alternative models of care may address the complex needs of this population. In addition, strategies can be implemented in community practices that may assist with the care of children with medical complexity such as collaborative care, engagement of key workers, focus on goal-directed care and use of care plans. The paediatric community should engage in health care reform discussions focused on chronic disease to ensure that the complex needs of these children are met.