Capitated, Multisector, Universal Preventive Health Care for Children and Youth.

This Viewpoint discusses the need to reorganize the provision of well-child care whereby responsibility for services is formally divided and coordinated and funding is free from traditional, risk-based health insurance.

Quality of Life and Well-Being for Children and Youth With Special Health Care Needs and their Families: A Vision for the Future.

OBJECTIVES: To fulfill the promise of a life of dignity, autonomy, and independence for children and youth with special health care needs (CYSHCN) and their families, greater value must be assigned to meaningful outcomes, such as quality of life and well-being. METHODS: Despite decades of research, programs, and measurements addressing quality of life and well-being for CYSHCN and their families, there still is no consensus on how to measure, implement, or achieve them. RESULTS: As the US health care system strives to reach the health care goals of safe, efficient, effective, equitable, timely, and patient-centered care, youth and families must be equal partners at all levels of the health care system-from clinical decision making to designing and implementing programs and policies. CONCLUSIONS: The health care system must systematically measure the priorities of CYSHCN and their families. It also must incorporate data on quality of life and well-being when developing services, supports, and systems that help CYSHCN and their families to flourish rather than hindering them.

The Emergence of Life Course Intervention Research: Optimizing Health Development and Child Well-Being.

Advances in life course health science, systems biology, and epigenetics suggest that health development can be represented as a trajectory affected by multiple risk and protective factors arrayed in a relational developmental ecosystem across child, family, community, and systems levels. Despite tremendous potential for early life interventions at multiple levels of this ecosystem to improve children's life course health trajectories, this potential has not been fully explored. In fact, Life Course Health Development is a low priority for both health care and research funding. Representing the work of the Life Course Intervention Research Network, this supplement to Pediatrics reports on the first steps taken to define the emerging discipline of life course intervention research. Articles cover the characteristics of life course interventions together with a research framework and core competencies for this work. Topics include family, community, and youth engagement as vital components of grounding this work in health equity, family health development and its measurement, supporting children after prematurity, and new approaches to early childhood mental health. Schools and telehealth are considered innovative platforms for life course interventions, whereas cross-sector partnerships are recognized as key components of interventions to address childhood adversity. Researchers apply a Life Course Health Development lens to juvenile justice issues, including the minimum age law, and consider potential trade-offs whereby "striving" (education and income mobility) can limit "thriving" (health mobility) for people of color and those raised in low-income families. Finally, we present the Australian experience of embedding life course interventions in longitudinal studies.

What Makes an Intervention a Life Course Intervention?

OBJECTIVES: To develop an initial list of characteristics of life course interventions to inform the emerging discipline of life course intervention research. METHODS: The Life Course Intervention Research Network, a collaborative national network of >75 researchers, service providers, community representatives, and thought leaders, considered the principles, characteristics, and utility of life course interventions. After an in-person launch meeting in 2019, the steering committee collaboratively and iteratively developed a list of life course intervention characteristics, incorporating a modified Delphi review process. RESULTS: The Life Course Intervention Research Network identified 12 characteristics of life course interventions. These interventions (1) are aimed at optimizing health trajectories; (2) are developmentally focused, (3) longitudinally focused, and (4) strategically timed; and are (5) designed to address multiple levels of the ecosystem where children are born, live, learn, and grow and (6) vertically, horizontally, and longitudinally integrated to produce a seamless, forward-leaning, health optimizing system. Interventions are designed to (7) support emerging health development capabilities; are (8) collaboratively codesigned by transdisciplinary research teams, including stakeholders; and incorporate (9) family-centered, (10) strengths-based, and (11) antiracist approaches with (12) a focus on health equity. CONCLUSIONS: The intention for this list of characteristics of life course interventions is to provide a starting point for wider discussion and to guide research development. Incorporation of these characteristics into intervention designs may improve emerging health trajectories and move critical developmental processes and pathways back on track, even optimizing them to prevent or reduce adverse outcomes.

Building a Life Course Intervention Research Framework.

OBJECTIVES: To report on first steps toward building a Life Course Intervention Research Framework (LCIRF) to guide researchers studying interventions to improve lifelong health. METHODS: The Life Course Intervention Research Network, a collaborative national network of >75 researchers, service providers, community representatives and thought leaders, participated in an iterative review process. Building on the revised Medical Research Council Guidance for Developing and Evaluating Complex Interventions, they identified 12 additional key models with features for inclusion in the LCIRF, then incorporated the 12 characteristics identified by the Life Course Intervention Research Network as actionable features of Life Course Interventions to produce the new LCIRF. RESULTS: The LCIRF sets out a detailed step-wise approach to intervention development: (1) conceptualization and planning, (2) design, (3) implementation, (4) evaluation, and (5) spreading and scaling of interventions. Each step is infused with life course intervention characteristics including a focus on (1) collaborative codesign (2) health optimization, (3) supporting emerging health development capabilities (4) strategic timing, (5) multilevel approaches, and (6) health equity. Key features include a detailed transdisciplinary knowledge synthesis to inform intervention development; formation of strong partnerships with family, community, and youth representatives in intervention codesign; a means of testing the impact of each intervention on biobehavioral processes underlying emerging health trajectories; and close attention to intervention context. CONCLUSIONS: This first iteration of the LCIRF has been largely expert driven. Next steps will involve widespread partner engagement in framework refinement and further development. Implementation will require changes to the way intervention studies are organized and funded.

Pediatric Preventive Care: Population Health and Individualized Care.

Well-child care is a near-universal service for young children toward which a great deal of time and professional resources are devoted but for which there is scant evidence of effectiveness in routine practice. It is composed of many components, the value of which likely varies with the quality of their provision and the needs and priorities of the children and families who receive them. Achieving more efficient and effective preventive care will require that pediatric practices segment the population they serve and design schedules and staffing to match patients' health, well-being, personal and social circumstances, and service needs. Care should be individualized and include essential screening, tests, procedures, and education on the basis of assessment of patients' and families' needs and priorities. The traditional schedule of individual, comprehensive preventive care visits should be reconsidered and replaced with a schedule that allows complete care to be provided over a series of visits, including those for acute and chronic care. Preventive pediatric care should be provided in family-centered, team-based practices with strong linkages to other providers in the community who serve and support children and families. Care should make use of the wide variety of modalities that exist, and face-to-face time should be reserved for those services that are both important and uniquely responsive to in-office intervention. This model of preventive care will require changes in training, responsibilities and reimbursement of health care team members, and enhanced communication and collaboration among all involved, especially with families.

Developing a Structure of Essential Services for a Child and Adolescent Mental Health System.

Policy Points That child and adolescent mental health services needs are frequently unmet has been known for many decades, yet few systemic solutions have been sought and fewer have been implemented at scale. Key among the barriers to improving child and adolescent mental health services has been the lack of well-organized primary mental health care. Such care is a mutual but uncoordinated responsibility of multiple disciplines and agencies. Achieving consensus on the essential structures and processes of mental health services is a feasible first step toward creating an organized system.

Life Course Health Development in Pediatric Practice.

The development of health is a cumulative, dynamic, and lifelong process responding to a variety of biological and behavioral influences, of which those in childhood are especially influential and, indeed, formative. Reflecting the balance of positive and adverse experiences during childhood, initial trajectories for future health and development emerge. Preventive pediatric care can anticipate and respond to those experiences and the personal and social circumstances in which they occur. These actions can promote better health and prevent chronic illness during adulthood. Building on the life course health development framework, ways to positively affect patterns of individual and population health practice are identified. Maximizing the opportunity to influence children's health over their lifetime will require purposeful partnerships with other entities with which children and their families interact as well as improvements in pediatric care processes. The latter includes expanding the databases that drive service (such as registries, care plans, and referrals) and adopting proactive, strengths-based, patient and family-centered, comprehensive, multidisciplinary models of care.

Screening Tools for Autism Spectrum Disorder in Primary Care: A Systematic Evidence Review.

CONTEXT: Recommendations conflict regarding universal application of formal screening instruments in primary care (PC) and PC-like settings for autism spectrum disorder (ASD). OBJECTIVES: We systematically reviewed evidence for universal screening of children for ASD in PC. DATA SOURCES: We searched Medline, PsychInfo, Educational Resources Informational Clearinghouse, and Cumulative Index of Nursing and Allied Health Literature. STUDY SELECTION: We included studies in which researchers report psychometric properties of screening tools in unselected populations across PC and PC-like settings. DATA EXTRACTION: At least 2 authors reviewed each study, extracted data, checked accuracy, and assigned quality ratings using predefined criteria. RESULTS: We found evidence for moderate to high positive predictive values for ASD screening tools to identify children aged 16 to 40 months and 1 study for ≥48 months in PC and PC-like settings. Limited evidence evaluating sensitivity, specificity, and negative predictive value of instruments was available. No studies directly evaluated the impact of screening on treatment or harm. LIMITATIONS: Potential limitations include publication bias, selective reporting within studies, and a constrained search. CONCLUSIONS: ASD screening tools can be used to accurately identify percentages of unselected populations of young children for ASD in PC and PC-like settings. The scope of challenges associated with establishing direct linkage suggests that clinical and policy groups will likely continue to guide screening practices. ASD is a common neurodevelopmental disorder associated with significant life span costs.1,2 Growing evidence supports functional gains and improved outcomes for young children receiving intensive intervention, so early identification on a population level is a pressing public health challenge.3,4.

Status Complexicus? The Emergence of Pediatric Complex Care.

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.