Children with medical complexity (CMC) have multiple chronic conditions and require an array of medical- and community-based providers. Dedicated care coordination is increasingly seen as key to ...addressing the fragmented care that CMC often encounter. Often conceptually misunderstood, care coordination is a team-driven activity that organizes and drives service integration. In this article, we examine models of care coordination and clarify related terms such as care integration and case management. The location of care coordination resources for CMC may range from direct practice provision to external organizations such as hospitals and accountable care organizations. We discuss the need for infrastructure building, design and implementation leadership, use of care coordination tools and training modules, and appropriate resource allocation under new payment models.
Introduction
Since 2001, the Health Resources and Services Administration’s Maternal and Child Health Bureau (HRSA MCHB) has funded and directed the National Survey of Children’s Health (NSCH) and ...the National Survey of Children with Special Health Care Needs (NS-CSHCN), unique sources of national and state-level data on child health and health care. Between 2012 and 2015, HRSA MCHB redesigned the surveys, combining content into a single survey, and shifting from a periodic interviewer-assisted telephone survey to an annual self-administered web/paper-based survey utilizing an address-based sampling frame.
Methods
The U.S. Census Bureau fielded the redesigned NSCH using a random sample of addresses drawn from the Census Master Address File, supplemented with a unique administrative flag to identify households most likely to include children. Data were collected June 2016–February 2017 using a multi-mode design, encouraging web-based responses while allowing for paper mail-in responses. A parent/caregiver knowledgeable about the child’s health completed an age-appropriate questionnaire. Experiments on incentives, branding, and contact strategies were conducted.
Results
Data were released in September 2017. The final sample size was 50,212 children; the overall weighted response rate was 40.7%. Comparison of 2016 estimates to those from previous survey iterations are not appropriate due to sampling and mode changes.
Discussion
The NSCH remains an invaluable data source for key measures of child health and attendant health care system, family, and community factors. The redesigned survey extended the utility of this resource while seeking a balance between previous strengths and innovations now possible.
During the latter half of the twentieth century, an explosion of research elucidated a growing number of causes of disease and contributors to health. Biopsychosocial models that accounted for the ...wide range of factors influencing health began to replace outmoded and overly simplified biomedical models of disease causation. More recently, models of lifecourse health development (LCHD) have synthesized research from biological, behavioral and social science disciplines, defined health development as a dynamic process that begins before conception and continues throughout the lifespan, and paved the way for the creation of novel strategies aimed at optimization of individual and population health trajectories. As rapid advances in epigenetics and biological systems research continue to inform and refine LCHD models, our healthcare delivery system has struggled to keep pace, and the gulf between knowledge and practice has widened. This paper attempts to chart the evolution of the LCHD framework, and illustrate its potential to transform how the MCH system addresses social, psychological, biological, and genetic influences on health, eliminates health disparities, reduces chronic illness, and contains healthcare costs. The LCHD approach can serve to highlight the foundational importance of MCH, moving it from the margins of national debate to the forefront of healthcare reform efforts. The paper concludes with suggestions for innovations that could accelerate the translation of health development principles into MCH practice.
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.
Identification of children at risk of developmental delay and/or impairment requires valid measurement of early child development (ECD). We systematically assess ECD measurement tools for accuracy ...and feasibility for use in routine services in low-income and middle-income countries (LMIC).
Building on World Bank and peer-reviewed literature reviews, we identified available ECD measurement tools for children aged 0-3 years used in ≥1 LMIC and matrixed these according to
(child age) and
(ECD domains) they measure at population or individual level. Tools measuring <2 years and covering ≥3 developmental domains, including cognition, were rated for accuracy and feasibility criteria using a rating approach derived from Grading of Recommendations, Assessment, Development and Evaluations.
61 tools were initially identified, 8% (n=5) population-level and 92% (n=56) individual-level screening or ability tests. Of these, 27 tools covering ≥3 domains beginning <2 years of age were selected for rating accuracy and feasibility. Recently developed population-level tools (n=2) rated highly overall, particularly in reliability, cultural adaptability, administration time and geographical uptake. Individual-level tool (n=25) ratings were variable, generally highest for reliability and lowest for accessibility, training, clinical relevance and geographical uptake.
Although multiple measurement tools exist, few are designed for multidomain ECD measurement in young children, especially in LMIC. No available tools rated strongly across
accuracy and feasibility criteria with accessibility, training requirements, clinical relevance and geographical uptake being poor for most tools. Further research is recommended to explore this gap in fit-for-purpose tools to monitor ECD in routine LMIC health services.
This article, written by a group of experienced parents of children with medical complexity (CMC), provides an overview of the demands of managing care from their unique perspective. The article ...articulates why attention to understanding the challenges that families of CMC face with a fragmented health care system, inadequate health insurance coverage, deficits in the delivery of medical care, and problems accessing other critical services (as well as lack of support for children and adolescents in developing and exercising self-management skills) are vital to efforts to improve the current system and positively impact the life course of vulnerable populations. The authors discuss the financial and intangible costs experienced by families of CMC and other stakeholders (including providers, payers, and others), as well as the benefits that can result when effective, flexible, comanaged team-based care coordination is provided within the environment that is the most natural locus of care for the family. The authors detail the role of policy strategies that provide protections for CMC and the importance of family-led advocacy and support organizations in helping families "on the front lines." Throughout the article, the case is made that families authentically involved at every level of health care systems are critical partners in designing policies and systems that will improve care for CMC. The experiences of families of CMC should inform and guide efforts to improve systems of care, thus positively impacting the life course of this vulnerable population.
From 1990-2010, worldwide child mortality declined by 43%, and maternal mortality declined by 40%. This paper compares two sources of progress: improvements in societal coverage of health ...determinants versus improvements in the impact of health determinants as a result of technical change.
This paper decomposes the progress made by 146 low- and middle-income countries (LMICs) in lowering childhood and maternal mortality into one component due to better health determinants like literacy, income, and health coverage and a second component due to changes in the impact of these health determinants. Health determinants were selected from eight distinct health-impacting sectors. Health determinants were selected from eight distinct health-impacting sectors. Regression models are used to estimate impact size in 1990 and again in 2010. Changes in the levels of health determinants were measured using secondary data.
The model shows that respectively 100% and 89% of the reductions in maternal and child mortality since 1990 were due to improvements in nationwide coverage of health determinants. The relative share of overall improvement attributable to any single determinant varies by country and by model specification. However, in aggregate, approximately 50% of the mortality reductions were due to improvements in the health sector, and the other 50% of the mortality reductions were due to gains outside the health sector.
Overall, countries improved maternal and child health (MCH) from 1990 to 2010 mainly through improvements in the societal coverage of a broad array of health system, social, economic and environmental determinants of child health. These findings vindicate efforts by the global community to obtain such improvements, and align with the post-2015 development agenda that builds on the lessons from the MDGs and highlights the importance of promoting health and sustainable development in a more integrated manner across sectors.
Children with medical complexity (CMC) often require multiple services across the continuum of care, such as therapies and home nursing. However, sufficient access to needed services is not assured ...and varies considerably by payer, many of whom who face pressures to control health spending. In this article, we review the rights of CMC in Medicaid, the Children's Health Insurance Program, and various forms of private health insurance to receive services that are necessary to promote optimal health, development, and family functioning. Controlling laws such as the Americans with Disabilities Act and the Early and Periodic Screening, Diagnostic, and Treatment provisions of the Medicaid Act are discussed, and precedential court decisions affecting CMC are reviewed. Implications for policy, advocacy, and payment model design are explored in the context of current emphasis on spending reduction.
Almost half of young children in the United States live in poverty or near poverty. The American Academy of Pediatrics is committed to reducing and ultimately eliminating child poverty in the United ...States. Poverty and related social determinants of health can lead to adverse health outcomes in childhood and across the life course, negatively affecting physical health, socioemotional development, and educational achievement. The American Academy of Pediatrics advocates for programs and policies that have been shown to improve the quality of life and health outcomes for children and families living in poverty. With an awareness and understanding of the effects of poverty on children, pediatricians and other pediatric health practitioners in a family-centered medical home can assess the financial stability of families, link families to resources, and coordinate care with community partners. Further research, advocacy, and continuing education will improve the ability of pediatricians to address the social determinants of health when caring for children who live in poverty. Accompanying this policy statement is a technical report that describes current knowledge on child poverty and the mechanisms by which poverty influences the health and well-being of children.
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