We are pleased to present a supplement to Pediatrics entitled “Building Systems That Work for Children with Complex Health Care Needs.” These articles are based on a symposium sponsored by the Lucile Packard Foundation for Children’s Health, which gathered families, providers, payers, advocates, and policy makers to discuss the key issues facing children with medical complexity (CMC). Traditionally, systems design initiatives have been focused on children with special health care needs, defined as “those who have 1 or more chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally”1 This conference is focused on CMC, a growing subpopulation of children with special health care needs whose care is singularly challenging to health systems. CMC are defined as those with severe chronic conditions, functional limitations, family-identified needs, and resource utilization.2,3 

The symposium, conducted in December 2015 in Washington, District of Columbia, was an intensive although short (1.5 days) gathering of experts and thought leaders in the field of pediatric complex care. Critical issues from the viewpoint of many experts and stakeholder groups were identified. Several broad themes emerged from the conference.4 First, the needs of CMC are insufficiently addressed in national health reform discussions, in which care of chronically ill adults is often emphasized. Second, there is an urgent need to focus on population management for CMC, appropriately assessing levels of service and coordination needs and appropriately allocating limited resources to provide services tailored to those needs in the most effective manner. Third, care planning and care coordination need to be family centered and focused on integration of care. Fourth, health systems need to promote self-management among CMC and their families across the spectrum of age and developmental ability. Fifth, models of team care, including comanagement among multiple team members, must be refined for CMC because they all receive multiple services across the continuum of care. Finally, new models of payment such as accountable care hold promise to incentivize improved care but need to be designed with the unique needs of CMC in mind because inadvertent conflicts often arise between child and family needs and system complexities. Attendees agreed that the session was just the first step in a large body of work to be done to further high-quality, family-centered care to best meet the needs of CMC. This supplement is an effort to capture the most important insights from the symposium and identify the next steps.

The authors of the articles begin with the most important perspective: that of families of CMC. Allshouse et al5 present how the perspective of those families on the front lines should inform systems development for their children. Individual health care encounters take a back seat to the tremendous system complexities families must master, and the benefits of appropriately financed strategies to implement team-based care are highlighted. The authors conclude that families must not just participate in system redesign efforts but help guide them.

Next, Cohen et al6 provide an overview of the forces driving a growing emphasis within clinical systems and health services research on CMC and explore their implications for pediatric health care systems that care for this population. They raise important questions about the relationship between this emphasis and how it might drive changes in practice and policy that benefit the health of CMC. The authors conclude that pediatric health systems must define populations of interest more clearly; incorporate components of care across inpatient, outpatient, and community delivery settings; and measure outcomes more comprehensively, focusing on health care processes and outcomes as well as cost reduction.

From the standpoint of individual care models and processes, the supplement then dives deeply into key issues health systems must address to provide high-quality care to CMC. Pordes et al7 review different models of outpatient care and key considerations for program development to ensure that CMC have the benefits of a medical home regardless of the model in which care is delivered. The authors evaluate the merits of primary-care centered, comanagement, and episodic care models and conclude that ongoing collaboration among multiple stakeholders is necessary to further refine models of care that meet the needs of CMC. Kuo et al8 explore the foundational activity of care coordination that must exist in any model of care and what health systems must build to implement it effectively. The authors posit that effective systems of care coordination require appropriate infrastructure, leadership in design and implementation, use of coordination and training tools, and careful resource allocation. Finally, Lozano and Houtrow9 detail how self-management should be promoted among CMC, recognizing the critical differences in appropriate self-management approaches between children and adults. The authors conclude that standardized approaches and tools, interdisciplinary engagement, and leveraged community resources are all essential to promote self-management.

The supplement then pivots to issues of law, ethics, and policy, all central to any system that enables appropriate care strategies for CMC. Perkins and Agrawal10 review the legal rights of CMC and the protections they afford children in the midst of changes in health financing that may affect coverage of needed services. The authors conclude that advocacy is required by multiple stakeholders to ensure that legal protections of CMC are protected and enforced. Feudtner et al11 analyze ethical considerations involved as principles of population health, including risk stratification, are increasingly applied to policy decisions affecting care. The authors posit a framework for ethical evaluation of risk assessment and risk stratification programs to ensure that they meet the needs of children and families, not just health systems and payers, and avoid inadvertently exacerbating rather than mitigating risk. Finally, Langer et al12 explore the challenges and implications of a shift to value-based payment for this population, concluding that legislative advocacy is required to ensure appropriate value-based payments are appropriate for CMC.

Tremendous progress has been made in recent years in highlighting the needs of CMC and building a theoretical and empirical basis to guide health systems development. However, much work remains to be done. The articles in this supplement point to areas of opportunity for clinical quality improvement, research, systems integration, and policy development, and we hope that the insights presented will stimulate further progress in the years to come.

     
  • CMC

    children with medical complexity

FUNDING: No external funding.

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.