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. To advance the system and prioritize well-being and optimal health for CYSHCN, the Health Resources and Services Administration's Maternal and Child Health Bureau, with input from diverse stakeholders, developed a set of core principles and actionable strategies for the field. This article presents principles and strategies in the Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and Their Families (Blueprint for Change), which acknowledges the comprehensive needs of CYSHCN, a changing health care system, and the disparities experienced by many CYSHCN. Four critical areas drive the Blueprint for Change: health equity, family and child well-being and quality of life, access to services, and financing of services. Although discussed separately, these critical areas are inherently interconnected and intend to move the field forward at the community, state, and federal levels. Addressing these critical areas requires a concerted, holistic, and integrated approach that will help us achieve the goal that CYSHCN enjoy a full life from childhood through adulthood and thrive in a system that supports their families and their social, health, and emotional needs, ensuring their dignity, autonomy, independence, and active participation in their communities.

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). Parent- and caregiver-reported measures of oral health problems were fair or poor teeth condition, decayed teeth and cavities, toothaches, and bleeding gums. POH services were preventive dental visits, cleanings, tooth brushing and oral health care instructions, fluoride, and sealants. Bivariate and multivariable logistic regression analyses were conducted. RESULTS: A higher proportion of CYSHCN than non-CYSHCN received a preventive dental visit in the past year (84% vs 78%, P < .0001). Similar patterns were found for the specific preventive services examined. However, CYSHCN had higher rates of oral health problems compared with non-CYSHCN. For example, decayed teeth and cavities were reported in 16% of CYSHCN versus 11% in non-CYSHCN (P < .0001). In adjusted analyses, several factors were significantly associated with decreased prevalence of receipt of POH services among CYSHCN, including younger or older age, lower household education, non-English language, lack of health insurance, lack of a medical home, and worse condition of teeth. CONCLUSIONS: CYSHCN have higher rates of POH service use yet worse oral health status than non-CYSHCN. Ensuring appropriate use of POH services among CYSHCN is critical to the reduction of oral health problems.

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). METHODS: Data came from the combined 2016-2017 National Survey of Children's Health (n = 29,617 youth ages 12-17). Parents/caregivers answered questions about their child's health care experiences, which were combined to measure receipt of HCT preparation and the other five components of a well-functioning system of services. Unadjusted and adjusted analyses were conducted to examine associations, stratified by youth with and without special health care needs (YSHCN/non-YSHCN). RESULTS: About 16.7% of YSCHN and 13.9% of non-YSHCN received HCT preparation (p = .0040). Additionally, 25.3% of YSHCN and 27.3% of non-YSHCN received all five remaining components of a system of services (p = .1212). HCT preparation was positively associated with receipt of the combined five components among both YSHCN (adjusted prevalence rate ratio = 1.53, 95% confidence interval: 1.20-1.86) and non-YSHCN (adjusted prevalence rate ratio = 1.63, 95% confidence interval: 1.39-1.88). Regarding individual system of services components, early and continuous screening for SHCN was significantly associated with HCT preparation for both populations. For non-YSHCN only, having a medical home was associated with HCT preparation. The remaining three components were not associated with HCT preparation for either population after adjusting for sociodemographic characteristics. CONCLUSIONS: Among both YSHCN and non-YSHCN, HCT preparation is positively associated with receipt of early and continuous screening for SHCN as well as the five combined components of a well-functioning system of services.

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

: media-1vid110.1542/5840358562001PEDS-VA_2018-1795Video Abstract 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). Between 2012 and 2015, the NSCH was redesigned, combining the 2 surveys into a single, annual assessment. In this study, we provide the latest estimates of medical home access among children in the United States. METHODS: We used data from the 2016 NSCH (N = 50 212). Medical home access was defined as a composite measure composed of 5 subcomponents (usual source of care, personal doctor or nurse, referral access, receipt of care coordination, and receipt of family-centered care) for 50 177 US children aged 0 to 17 years. We conducted bivariate analyses and logistic regression to examine the sociodemographic and health characteristics associated with reported attainment of the medical home composite measure and each subcomponent. Analyses were survey weighted. RESULTS: In 2016, 43.2% of children with special health care needs (CSHCN) and 50.0% of non-CSHCN were reported to have access to a medical home. Attainment of the medical home composite measure varied significantly by sociodemographic characteristics among both CSHCN and non-CSHCN, as did attainment rates for each of the 5 subcomponents. The medical complexity of CSHCN was also associated with attainment rates of all outcomes. CONCLUSIONS: The medical home incorporates elements of care considered necessary for providing comprehensive, quality care. Our results indicate that there is still room to improve access to the medical home among all children.

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). Parents and/or caregivers were asked if transition planning occurred, based on the following elements: (1) doctor or other health care provider (HCP) discussed the eventual shift to an HCP who cares for adults, (2) an HCP actively worked with youth to gain self-care skills or understand changes in health care at age 18, and (3) youth had time alone with an HCP during the last preventive visit. Sociodemographic and health system characteristics were assessed for associations with transition planning. RESULTS: Nationally, 17% of YSHCN and 14% of youth without SHCN met the overall transition measure. Older age (15-17 years) was the only sociodemographic factor associated with meeting the overall transition measure and individual elements for YSHCN and youth without SHCN. Other sociodemographic characteristics associated with transition planning differed among the 2 populations. Receipt of care coordination and a written plan was associated with transition planning for YSHCN. CONCLUSIONS: This study reveals that few youth with and without SHCN receive transition planning support. It underscores the need for HCPs to work with youth independently and in collaboration with parents and/or caregivers throughout adolescence to gain self-care skills and prepare for adult-focused care.

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. Six dependent variables represented unmet needs and utilization. Adjusted analyses controlled for sociodemographic and health measures. RESULTS: A total of 5,862 individuals were identified as YSHCN, and nearly 70% had three or more comorbid conditions. Over 90% used medical care, preventive care, or dental care in the past 12 months, while 8% reported having unmet health needs (compared with 2.8% of non-YSHCN). Using a typology of qualifying criteria for special health care needs, we found that YSHCN with increasing complexity of needs were more likely to report unmet health needs, use of mental health care services, and emergency department use, compared with YSHCN using medication only to manage their conditions. All YSHCN living in households below 400% federal poverty level were less likely to utilize nearly all types of health care examined, with the exception of mental health care use, compared with those at or above 400% federal poverty level. CONCLUSIONS: Differences in complexity of needs, race/ethnicity, and poverty status highlight existing gaps in health care utilization and persistent unmet health needs among YSHCN. Efforts should focus on strengthening coordinated systems of care that optimally meet the needs of YSHCN so they may thrive in their families and communities.

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.S. primary care pediatricians view structure-focused and relationship-focused practice activities of the FCMH as distinct constructs and how these constructs are associated with practice functions. Methods We analyzed data from the 2012 American Academy of Pediatrics Periodic Survey of Fellows #79 (n = 572) addressing opinions and practice activities related to the FCMH. Through a modified Delphi expert process, we selected items believed to be primarily structure-focused and items that were relationship-focused. Confirmatory factor analysis was used to test whether these constructs were distinct. Separate structural equation models assessed whether structure-focused and relationship-focused activities predicted three broader survey items: (1) interest in FCMH; (2) application for FCMH recognition; and (3) whether a team meets to discuss FCMH improvements. Results The initial two-factor model did not fit well, but improved with movement of two items from the structure to the relationship-focused group. The two factors correlated at r = 0.70. Respondents with increased relationship-focused activities had statistically higher odds of having medium/high interest in FCMH, and having a team meet to discuss FCMH improvements. Respondents with increased structure-focused activities also had higher odds of having team meetings to discuss FCMH improvements, but lower odds of applying for FCMH recognition. Conclusions for Practice The FCMH is multi-dimensional, with relationship- and structure-focused activities differentially linked to pediatrician reports of broader FCMH functions.

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. POPULATION: We report 20 years of case finding and laboratory data for sickle cell disease and trait to assist in: planning for health services delivery; providing data for researchers; aiding in tracking health outcome trends; and assessing sickle gene prevalence in the newborn population. During the 20-year period, there were 39,422 confirmed cases of sickle cell disease among 76,527,627 newborn births screened (1:1941) and 1,107,875 laboratory reports of probable sickle trait among 73,951,175 newborn births screened (1:67). The highest sickle cell disease incidence during the 20 years was in the District of Columbia (1:437) followed by Mississippi (1:683) and South Carolina (1:771). For sickle cell trait, the highest incidences were in the District of Columbia (1:22), Mississippi (1:26), and South Carolina (1:31).

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. Bivariate and multivariable analyses were conducted to assess factors associated with adequate insurance coverage in 2009-2010. Unadjusted and adjusted prevalence estimates were examined to identify changes in the type of insurance coverage and the proportion of CSHCN with adequate coverage by insurance type. RESULTS: The proportion of CSHCN with private coverage decreased from 64.7% to 50.7% between 2001 and 2009-2010, while public coverage increased from 21.7% to 34.7%; the proportion of CSHCN without any insurance declined from 5.2% to 3.5%. The proportion of CSHCN with adequate coverage varied over time and by insurance type: among privately covered CSHCN, the proportion with adequate coverage declined (62.6% to 59.6%), while among publicly covered CSHCN, the proportion with adequate insurance increased (63.0% to 70.7%). Publicly insured CSHCN experienced improvements in each of the 3 adequacy components. CONCLUSIONS: There has been a continued shift from private to public coverage, which is more affordable, offers benefits that are more likely to meet CSHCN needs, and allowed CSHCN to see necessary providers.

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., many IEM are detected through state newborn screening (NBS) programs. To inform research on IEM and provide necessary resources for researchers, we are providing: tabulation of ten-year state NBS data for selected IEM detected through NBS; costs of medical foods used in the management of IEM; and an assessment of corporate policies regarding provision of nutritional interventions at no or reduced cost to individuals with IEM. The calculated IEM incidences are based on analyses of ten-year data (2001-2011) from the National Newborn Screening Information System (NNSIS). Costs to feed an average person with an IEM were approximated by determining costs to feed an individual with an IEM, minus the annual expenditure for food for an individual without an IEM. Both the incidence and costs of nutritional intervention data will be useful in future research concerning the impact of IEM disorders on families, individuals and society.

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. The US Department of Health and Human Services responded to this report by accelerating and integrating ongoing initiatives and beginning new ones. This article summarizes recent federally supported activities promoting an integrated public health approach for epilepsy, highlighting progress in response to the landmark 2012 IOM report and identifying opportunities for continued public health action.

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. We analyzed the association of selected characteristics with successful transition preparation. RESULTS: Overall, 40% of YSHCN meet the national transition core outcome. Several factors are associated with transition preparation, including female gender; younger age; white race; non-Hispanic ethnicity; income ≥400% of poverty; little or no impact of condition on activities; having a condition other than an emotional, behavioral, or developmental condition; having a medical home; and being privately insured. CONCLUSIONS: Most YSHCN are not receiving needed transition preparation. Although most providers are encouraging YSHCN to assume responsibility for their own health, far fewer are discussing transfer to an adult provider and insurance continuity. Although changes in sample design limit trend analysis, there have been no discernible improvements since this transition outcome was measured in the 2005-2006 National Survey of Children with Special Health Care Needs. The 2011 release of the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians clinical recommendations on transition, new transition tools, and the spread of medical home should stimulate future improvements in transition performance.

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. These meetings were for the purpose of evaluating whether conditions identifiable through point-of-care screening should be added to the recommended universal screening panel, and to identify key considerations for birth hospitals, public health agencies, and clinicians when point-of-care newborn screening is implemented.

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. A study protocol and data abstraction form were developed and IRB approvals obtained. Data from three state NDBS programs on a total of 151 patients indicated that genetic services are documented systematically only by metabolic clinics, most often by genetic counselors. Data from 69 endocrinology patients indicated infrequent referrals for genetic services; as expected higher for congenital adrenal hyperplasia than congenital hypothyroidism. Endocrinology patients were often counseled by physicians. While systematic tracking of genetic counseling services may be desirable for quality assurance of NDBS follow-up services, current systems do not appear conducive to this practice. Clinical records are not typically shared with NDBS programs and tracking of follow-up clinical genetic services has not been generally defined as a NDBS program responsibility. Rather, tracking of clinical services, while recognized as useful data, has been viewed by NDBS programs as a research project. The associated IRB requirements for patient-related research may pose an additional challenge. National guidance for NDBS programs that define quality genetic service indicators and monitoring responsibilities are needed. US experiences in this regard may provide information that can assist developing programs in avoiding tracking issues.

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. Federal sponsorship of a model performance evaluation and assessment scheme (PEAS) has resulted in a comprehensive listing of quality indicators for system self-assessment. We review the PEAS evolution process in an effort to illustrate the necessary infrastructure considerations in a well-functioning NBS system. Readers are encouraged to identify their role in the system and to interact appropriately at the local level. The comprehensive PEAS indicator list is provided as an Appendix.

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. Of the 39 public health agencies that participated, 18 (46%) reported already integrating some or all of their CHIS, and 13 (33%) reported to be planning to integrate during the next 3 years. Information systems most commonly integrated include Early Hearing Detection and Intervention (EHDI), immunization, vital records, and Newborn Dried Bloodspot Screening (NDBS). Given the high priority that has been placed on using technology to improve health status in the United States, the emphasis on expanding the capability for the electronic exchange of health information, and federal support for electronic health records by 2014, public health agencies should be encouraged and supported in their efforts to develop, implement, and maintain integrated CHIS to facilitate the electronic exchange of health information with the clinical healthcare sector.

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. RESULTS: Results of the survey indicate that (1) approximately one half of CSHCN receive care that meets all 5 criteria established for a medical home; (2) access to a medical home is affected significantly by race/ethnicity, income, health insurance status, and severity of the child's condition; (3) parents of children who do have a medical home report significantly less delayed or forgone care and significantly fewer unmet needs for health care and family support services; and (4) limited improvements have occurred since success rates were first measured by using the 2001 NS-CSHCN. CONCLUSIONS: The findings suggest that, although some components of the medical home concept have been achieved for most CSHCN, care synonymous with the principles underlying the medical home is not yet in place for a significant number of CSHCN and their families.

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). Long-term follow-up includes care coordination/ongoing treatment, continuous quality improvement, knowledge generation, and knowledge management and dissemination. In addition, the Newborn Dried Bloodspot Screening workgroup identified public health care coordination as a new and important role to assure successful long-term follow-up. This role is defined in some detail. CONCLUSION: Successful newborn screening systems rely on effective partnerships to ensure that there is appropriate screening, diagnosis, and follow-up. Coordinating care across multiple settings and service providers, ensuring continuity of care over time, and generating new knowledge about heritable disorders requires information systems that can fully support the process. Developing such information systems requires a clear understanding of the Newborn Dried Bloodspot Screening process and documentation of the roles and responsibilities for all involved. Business process analysis can be applied to Newborn Dried Bloodspot Screening and other child health programs to help achieve that outcome.