The Collaborative Improvement and Innovation Network for Children With Medical Complexity.

In response to a number of emerging issues, in 2017 the federal Maternal and Child Health Bureau funded its first collaborative quality improvement network aimed at improving the quality of life for children with medical complexity, the well-being of their families and the cost-effectiveness of their care. This paper is intended as a brief introduction to the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity or CMC CoIIN project. In it, you will learn about the origins of the project, the guiding principles used to cocreate and promote measurable, meaningful family engagement in systems-level change efforts, its goals and objectives, the impact of the coronavirus disease 2019 pandemic on the project and some high-level learnings from our experiences, which have implications for future care delivery improvements for this growing and vulnerable population of children.

Annual Days With a Health Care Encounter for Children and Youth Enrolled in Medicaid: A Multistate Analysis.

Objective: To assess the number of days that children experienced a health care encounter and associations between chronic condition types and health care encounters.

Methods: Retrospective analysis of data from 5,082,231 children ages 0 to 18 years enrolled in Medicaid during 2017 in 12 US states contained in the IBM Watson Marketscan Medicaid Database. We counted and categorized enrollees' encounter days, defined as unique days a child had a health care visit, by type of health service.

A Blueprint for Change: Guiding Principles for a System of Services for Children and Youth With Special Health Care Needs and Their Families.

Children and youth with special health care needs (CYSHCN) and their families continue to face challenges in accessing health care and other services in an integrated, family-centered, evidence-informed, culturally responsive system. More than 12 million, or almost 86%, of CYSHCN ages 1-17 years do not have access to a well-functioning system of services. Further, the inequities experienced by CYSHCN and their families, particularly those in under-resourced communities, highlight the critical need to address social determinants of health and our nation's approach to delivering health care.

Oral Health Among Children and Youth With Special Health Care Needs.

Objectives: We sought to estimate the prevalence of oral health problems and receipt of preventive oral health (POH) services among children and youth with special health care needs (CYSHCN) and investigate associations with child- and family-level characteristics.

Methods: We used pooled data from the 2016-2018 National Survey of Children's Health. The analytic sample was limited to children 1 to 17 years old, including 23 099 CYSHCN and 75 612 children without special health care needs (non-CYSHCN).

Associations Between Health Care Transition Preparation Among Youth in the U.S. and Other Components of a Well-Functioning System of Services.

Purpose: This study examines the relationships between receipt of health care transition (HCT) preparation among U.S. youth and five other components of a well-functioning system of services (family partnership in decision-making, medical home, early/continuous screening for special health care needs [SHCN], continuous/adequate health insurance, access to community-based services).

Access to the Medical Home Among Children With and Without Special Health Care Needs.

Unlabelled: : media-1vid110.1542/5840358562001PEDS-VA_2018-1795 OBJECTIVES: The medical home is central to providing quality health care for children. Access to the medical home has historically been tracked by using the National Survey of Children With Special Health Care Needs and the National Survey of Children's Health (NSCH).

Transition Planning Among US Youth With and Without Special Health Care Needs.

Background: Researchers have shown that most youth with special health care needs (YSHCN) are not receiving guidance on planning for health care transition. This study examines current transition planning among US youth with and without special health care needs (SHCN).

Methods: The 2016 National Survey of Children's Health is nationally representative and includes 20 708 youth (12-17 years old).

Health Care Utilization and Unmet Need Among Youth With Special Health Care Needs.

Purpose: To examine unmet health needs and health care utilization among youth with special health care needs (YSHCN).

Methods: We analyzed data among youth aged 12-17 years using the 2016 National Survey of Children's Health. We conducted descriptive analyses comparing YSHCN with non-YSHCN, and bivariate and multivariable analyses examining associations between dependent and independent measures.

Relationship-focused vs. Structural Activities in Medical Home Measurement in Pediatrics.

Objectives The Family-Centered Medical Home (FCMH) has become a model of effective and efficient primary care. However, efforts to measure the FCMH may ignore its complexity. We sought to determine whether U.

A Learning Collaborative Approach to Improve Primary Care STI Screening.

The Bronx Ongoing Pediatric Screening (BOPS) project sought to improve screening for sexual activity and sexually transmitted infections (gonorrhea and chlamydia [GCC] and HIV) in a primary care network, employing a modified learning collaborative, real-time clinical data feedback to practices, improvement coaching, and a pay-for-quality monetary incentive. Outcomes are compared for 11 BOPS-participating sites and 10 non-participating sites. The quarterly median rate for documenting sexual activity status increased from 55% to 88% (BOPS sites) and from 13% to 74% (non-BOPS sites).

Medical Homes for Children With Special Health Care Needs: Primary Care or Subspecialty Service?

Objective: To examine primary care pediatricians' (PCPs) beliefs about whether the family-centered medical home (FCMH) should be in primary or subspecialty care for children with different degrees of complexity; and to examine practice characteristics associated with these beliefs.

Methods: Data from the American Academy of Pediatrics Periodic Survey (PS 79) conducted in 2012 were analyzed. Outcomes were agreement/strong agreement that 1) primary care should be the FCMH locus for most children with special health care needs (CSHCN) and 2) subspecialty care is the best FCMH locus for children with rare or complex conditions.

Newborn screening for sickle cell diseases in the United States: A review of data spanning 2 decades.

Unlabelled: Sickle cell disease is a group of disorders, the majority of which are detected through state newborn screening programs. There is limited knowledge of disease prevalence in the U.S.

Assuring Adequate Health Insurance for Children With Special Health Care Needs: Progress From 2001 to 2009-2010.

Objective: To report on coverage and adequacy of health insurance for children with special health care needs (CSHCN) in 2009-2010 and assess changes since 2001.

Methods: Data were from the National Survey of Children with Special Health Care Needs (NS-CSHCN), a random-digit telephone survey with 40,243 (2009-2010) and 38,866 (2001) completed interviews. Consistency and adequacy of insurance was measured by: 1) coverage status, 2) gaps in coverage, 3) coverage of needed services, 4) reasonableness of uncovered costs, and 5) ability to see needed providers, as reported by parents.

Toward an integrated public health approach for epilepsy in the 21st century.

Epilepsy, a complex spectrum of disorders, merits enhanced public health action. In 2012, the Institute of Medicine (IOM) released a seminal report on the public health dimensions of the epilepsies, recommending actions in 7 domains. The report urged a more integrated and coordinated national approach for care centering on the whole patient, including heightened attention to comorbidities and quality of life; more timely referral and access to treatments; and improved community resources, education, stakeholder collaboration, and public communication.

Inborn errors of metabolism identified via newborn screening: Ten-year incidence data and costs of nutritional interventions for research agenda planning.

Inborn errors of metabolism (IEM) are genetic disorders in which specific enzyme defects interfere with the normal metabolism of exogenous (dietary) or endogenous protein, carbohydrate, or fat. In the U.S.

Assessing Systems of Care for US Children with Epilepsy/Seizure Disorder.

Background. The proportion of US children with special health care needs (CSHCN) with epilepsy/seizure disorder who receive care in high-quality health service systems was examined. Methodology.

Current status of transition preparation among youth with special needs in the United States.

Objective: To examine current US performance on transition from pediatric to adult health care and discuss strategies for improvement.

Methods: The 2009-2010 National Survey of Children with Special Health Care Needs is a nationally representative sample with 17 114 parent respondents who have youth with special health care needs (YSHCN) ages 12 and 18. They are asked about transition to an adult provider, changing health care needs, increasing responsibility for health care needs, and maintaining insurance coverage.

A framework for key considerations regarding point-of-care screening of newborns.

Newborn screening is performed under public health authority, with analysis carried out primarily by public health laboratories or other centralized laboratories. Increasingly, opportunities to improve infant health will arise from including screening tests that are completed at the birth centers instead of in centralized laboratories, constituting a significant shift for newborn screening. This report summarizes a framework developed by the US Secretary of Health and Human Services Advisory Committee on Heritable Disorders in Newborns and Children based on a series of meetings held during 2011 and 2012.

Tracking clinical genetic services for newborns identified through newborn dried bloodspot screening in the United States-lessons learned.

To determine how US newborn dried bloodspot screening (NDBS) programs obtain patient-level data on clinical genetic counseling services offered to families of newborns identified through newborn NDBS and the extent to which newborns and their families receive these services. These data should serve to inform programs and lead to improved NDBS follow-up services. Collaborations were established with three state NDBS programs that reported systematically tracking genetic counseling services to newborns and their families identified through NDBS.

Newborn Screening System Performance Evaluation Assessment Scheme (PEAS).

Newborn screening (NBS) reaches approximately all of the 4 million newborns in the United States each year and has been effective in significantly reducing the morbidity and mortality that results from certain congenital conditions. The comprehensive NBS system can be divided into preanalytic (education and screening), analytic (laboratory testing), and postanalytic (reporting, short-term follow-up/tracking, diagnosis, treatment/management, ancillary services, and outcome evaluation) activities. To monitor and improve the screening system, there has been increasing emphasis on evaluation models.

Integrating child health information systems in public health agencies.

Public health agencies at state and local levels are integrating information systems to improve health outcomes for children. An assessment was conducted to describe the extent to which public health agencies are currently integrating child health information systems (CHIS). Using online technology information was collected, to assess completed and planned activities related to integration of CHIS, maturity of these systems, and factors that influence decisions by public health agencies to pursue integration activities.

Access to the medical home: new findings from the 2005-2006 National Survey of Children with Special Health Care Needs.

Objective: This article reports new findings from the 2005-2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) regarding parental perceptions of the extent to which children with special health care needs (CSHCN) have access to a medical home.

Methods: Five criteria were analyzed to describe the extent to which CSHCN receive care characteristic of the medical home concept. Data on 40840 children included in the NS-CSHCN were used to assess the presence of a medical home, as indicated by achieving each of the 5 criteria.

Newborn dried bloodspot screening: mapping the clinical and public health components and activities.

Purpose: To define components and activities of the entire Newborn Dried Bloodspot Screening process, highlighting long-term follow-up-both clinical and public health-as a basis for defining requirements for information systems to support the process.

Methods: Convene a workgroup of experts involved in various aspects of Newborn Dried Bloodspot Screening and conduct an analysis of the components and activities involved, applying Business Process Analysis, part of a collaborative requirements definition process conceived by the Public Health Informatics Institute.

Results: The Newborn Dried Bloodspot Screening workgroup identified four primary business processes: screening, confirmatory/diagnostic testing, transition to long-term follow-up, and intervention management (long-term follow-up).