Children and Youth With Special Health Care Needs: A Profile.

BACKGROUND AND OBJECTIVES: The National Survey of Children's Health (NSCH) is the nation's primary source for data on children and youth with special health care needs (CYSHCN) and the only source for state-level estimates. We provide the latest estimates of CYSHCN in the United States, describe population characteristics, as well as the proportion that are served in a well-functioning system of care. METHODS: Data from the 2016, 2017, 2018, and 2019 NSCH were appended, resulting in a final analytic sample of 30 301 CYSHCN. Bivariate associations between the covariates and SHCN status as well as the 6 core outcomes that comprise a well-functioning system of care were examined using χ2 tests. Multivariable logistic regression was used to identify factors independently associated with SHCN status and a well-functioning system of care. RESULTS: The overall prevalence of CYSHCN was 18.8% and ranged from 13.6% in Hawaii to 24% of individuals included in the NSCH in West Virginia. The most reported type of SHCN was prescription medication use (29.3%), whereas 25.9% of CYSHCN had functional limitations. Over one-third reported no daily activity impacts, whereas 18.9% reported consistent or significant daily impacts. CYSHCN were more likely than non-CYSHCN to be male, older, non-Hispanic Black, live in poverty, and have public insurance but disparities by race and ethnicity and income were no longer significant after adjustment. Only 14.9% of CYSHCN were reported to receive care in a well-organized system. Rates were substantially lower among older and more heavily affected children with adjusted rate ratios for access to a well-functioning system of care, indicating a 72% reduction for adolescents (12-17), compared with young children (0-5) and a 24% to 53% reduction for those with more than a prescription medication qualifying need. CONCLUSIONS: CYSHCN remain a sizable and diverse population with distinct challenges in accessing well-functioning systems of care, particularly for those with the greatest needs. Our results provide a profile of the population designed to inform future surveillance, research, program, and policy priorities showcased in this Special Issue.

Neonatal Abstinence Syndrome and Maternal Opioid-Related Diagnoses in the US, 2010-2017.

Importance: Substantial increases in both neonatal abstinence syndrome (NAS) and maternal opioid use disorder have been observed through 2014. Objective: To examine national and state variation in NAS and maternal opioid-related diagnoses (MOD) rates in 2017 and to describe national and state changes since 2010 in the US, which included expanded MOD codes (opioid use disorder plus long-term and unspecified use) implemented in International Classification of Disease, 10th Revision, Clinical Modification. Design, Setting, and Participants: Repeated cross-sectional analysis of the 2010 to 2017 Healthcare Cost and Utilization Project's National Inpatient Sample and State Inpatient Databases, an all-payer compendium of hospital discharge records from community nonrehabilitation hospitals in 47 states and the District of Columbia. Exposures: State and year. Main Outcomes and Measures: NAS rate per 1000 birth hospitalizations and MOD rate per 1000 delivery hospitalizations. Results: In 2017, there were 751 037 birth hospitalizations and 748 239 delivery hospitalizations in the national sample; 5375 newborns had NAS and 6065 women had MOD documented in the discharge record. Mean gestational age was 38.4 weeks and mean maternal age was 28.8 years. From 2010 to 2017, the estimated NAS rate significantly increased by 3.3 per 1000 birth hospitalizations (95% CI, 2.5-4.1), from 4.0 (95% CI, 3.3-4.7) to 7.3 (95% CI, 6.8-7.7). The estimated MOD rate significantly increased by 4.6 per 1000 delivery hospitalizations (95% CI, 3.9-5.4), from 3.5 (95% CI, 3.0-4.1) to 8.2 (95% CI, 7.7-8.7). Larger increases for MOD vs NAS rates occurred with new International Classification of Disease, 10th Revision, Clinical Modification codes in 2016. From a census of 47 state databases in 2017, NAS rates ranged from 1.3 per 1000 birth hospitalizations in Nebraska to 53.5 per 1000 birth hospitalizations in West Virginia, with Maine (31.4), Vermont (29.4), Delaware (24.2), and Kentucky (23.9) also exceeding 20 per 1000 birth hospitalizations, while MOD rates ranged from 1.7 per 1000 delivery hospitalizations in Nebraska to 47.3 per 1000 delivery hospitalizations in Vermont, with West Virginia (40.1), Maine (37.8), Delaware (24.3), and Kentucky (23.4) also exceeding 20 per 1000 delivery hospitalizations. From 2010 to 2017, NAS and MOD rates increased significantly for all states except Nebraska and Vermont, which only had MOD increases. Conclusions and Relevance: In the US from 2010 to 2017, estimated rates of NAS and MOD significantly increased nationally and for the majority of states, with notable state-level variation.

Determinants of rural-urban differences in health care provider visits among women of reproductive age in the United States.

BACKGROUND: Rural health disparities and access gaps may contribute to higher maternal and infant morbidity and mortality. Understanding and addressing access barriers for specialty women's health services is important in mitigating risks for adverse childbirth events. The objective of this study was to investigate rural-urban differences in health care access for women of reproductive age by examining differences in past-year provider visit rates by provider type, and quantifying the contributing factors to these findings. METHODS AND FINDINGS: Using a nationally-representative sample of reproductive age women (n = 37,026) from the Medical Expenditure Panel Survey (2010-2015) linked to the Area Health Resource File, rural-urban differences in past-year office visit rates with health care providers were examined. Blinder-Oaxaca decomposition analysis quantified the portion of disparities explained by individual- and county-level sociodemographic and provider supply characteristics. Overall, there were no rural-urban differences in past-year visits with women's health providers collectively (65.0% vs 62.4%), however differences were observed by provider type. Rural women had lower past-year obstetrician-gynecologist (OB-GYN) visit rates than urban women (23.3% vs. 26.6%), and higher visit rates with family medicine physicians (24.3% vs. 20.9%) and nurse practitioners/physician assistants (NPs/PAs) (24.6% vs. 16.1%). Lower OB-GYN availability in rural versus urban counties (6.1 vs. 13.7 providers/100,000 population) explained most of the rural disadvantage in OB-GYN visit rates (83.8%), and much of the higher family physician (80.9%) and NP/PA (50.1%) visit rates. Other individual- and county-level characteristics had smaller effects on rural-urban differences. CONCLUSION: Although there were no overall rural-urban differences in past-year visit rates, the lower OB-GYN availability in rural areas appears to affect the types of health care providers seen by women. Whether rural women are receiving adequate specialized women's health care services, while seeing a different cadre of providers, warrants further investigation and has particular relevance for women experiencing high-risk pregnancies and deliveries.

Regional variation in Black infant mortality: The contribution of contextual factors.

BACKGROUND: Compared to other racial/ethnic groups, infant mortality rates (IMR) are persistently highestamong Black infants in the United States, yet there is considerable regional variation. We examined state and county-level contextual factors that may explain regional differences in Black IMR and identified potential strategies for improvement. METHODS AND FINDINGS: Black infant mortality data are from the Linked Birth/Infant Death files for 2009-2011. State and county contextual factors within social, economic, environmental, and health domains were compiled from various Census databases, the Food Environment Atlas, and the Area Health Resource File. Region was defined by the nine Census Divisions. We examined contextual associations with Black IMR using aggregated county-level Poisson regression with standard errors adjusted for clustering by state. Overall, Black IMR varied 1.5-fold across regions, ranging from 8.78 per 1,000 in New England to 13.77 per 1,000 in the Midwest. In adjusted models, the following factors were protective for Black IMR: higher state-level Black-White marriage rate (rate ratio (RR) per standard deviation (SD) increase = 0.81, 95% confidence interval (CI):0.70-0.95), higher state maternal and child health budget per capita (RR per SD = 0.96, 95% CI:0.92-0.99), and higher county-level Black index of concentration at the extremes (RR per SD = 0.85, 95% CI:0.81-0.90). Modeled variables accounted for 35% of the regional variation in Black IMR. CONCLUSIONS: These findings are broadly supportive of ongoing public policy efforts to enhance social integration across races, support health and social welfare program spending, and improve economic prosperity. Although contextual factors accounted for about a third of regional variation, further research is needed to more fully understand regional variation in Black IMR disparities.

Urban-Rural Infant Mortality Disparities by Race and Ethnicity and Cause of Death.

INTRODUCTION: Infant mortality rates are higher in nonmetropolitan areas versus large metropolitan areas. Variation by race/ethnicity and cause of death has not been assessed. Urban-rural infant mortality rate differences were quantified by race/ethnicity and cause of death. METHODS: National Vital Statistics System linked birth/infant death data (2014-2016) were analyzed in 2019 by 3 urban-rural county classifications: large metropolitan, medium/small metropolitan, and nonmetropolitan. Excess infant mortality rates (rate differences) by urban-rural classification were calculated relative to large metropolitan areas overall and for each racial/ethnic group. The number of excess deaths, population attributable fraction, and proportion of excess deaths attributable to underlying causes of death was calculated. RESULTS: Nonmetropolitan areas had the highest excess infant mortality rate overall. Excess infant mortality rates were substantially lower for Hispanic infants than other races/ethnicities. Overall, 7.4% of infant deaths would be prevented if all areas had the infant mortality rate of large metropolitan areas. With more than half of births occurring outside of large metropolitan areas, the population attributable fraction was highest for American Indian/Alaska Natives (20.3%) and whites, non-Hispanic (14.3%). Excess infant mortality rates in both nonmetropolitan and medium/small metropolitan areas were primarily attributable to sudden unexpected infant deaths (42.3% and 31.9%) and congenital anomalies (30.1% and 26.8%). This pattern was consistent for all racial/ethnic groups except black, non-Hispanic infants, for whom preterm-related and sudden unexpected infant deaths accounted for the largest share of excess infant mortality rates. CONCLUSIONS: Infant mortality increases with rurality, and excess infant mortality rates are predominantly attributable to sudden unexpected infant deaths and congenital anomalies, with differences by race/ethnicity regarding magnitude and cause of death.

Prevalence and Factors Associated With Safe Infant Sleep Practices.

OBJECTIVES: To examine prevalence of safe infant sleep practices and variation by sociodemographic, behavioral, and health care characteristics, including provider advice. METHODS: Using 2016 Pregnancy Risk Assessment Monitoring System data from 29 states, we examined maternal report of 4 safe sleep practices indicating how their infant usually slept: (1) back sleep position, (2) separate approved sleep surface, (3) room-sharing without bed-sharing, and (4) no soft objects or loose bedding as well as receipt of health care provider advice corresponding to each sleep practice. RESULTS: Most mothers reported usually placing their infants to sleep on their backs (78.0%), followed by room-sharing without bed-sharing (57.1%). Fewer reported avoiding soft bedding (42.4%) and using a separate approved sleep surface (31.8%). Reported receipt of provider advice ranged from 48.8% (room-sharing without bed-sharing) to 92.6% (back sleep position). Differences by sociodemographic, behavioral, and health care characteristics were larger for safe sleep practices (∼10-20 percentage points) than receipt of advice (∼5-10 percentage points). Receipt of provider advice was associated with increased use of safe sleep practices, ranging from 12% for room-sharing without bed-sharing (adjusted prevalence ratio: 1.12; 95% confidence interval: 1.09-1.16) to 28% for back sleep position (adjusted prevalence ratio: 1.28; 95% confidence interval: 1.21-1.35). State-level differences in safe sleep practices spanned 20 to 25 percentage points and did not change substantially after adjustment for available characteristics. CONCLUSIONS: Safe infant sleep practices, especially those other than back sleep position, are suboptimal, with demographic and state-level differences indicating improvement opportunities. Receipt of provider advice is an important modifiable factor to improve infant sleep practices.

Black-White Disparities in Preterm Birth: Geographic, Social, and Health Determinants.

INTRODUCTION: Reducing racial/ethnic disparities in preterm birth is a priority for U.S. public health programs. The study objective was to quantify the relative contribution of geographic, sociodemographic, and health determinants to the black, non-Hispanic and white, non-Hispanic preterm birth disparity. METHODS: Cross-sectional 2016 U.S. birth certificate data (analyzed in 2018-2019) were used. Black-white differences in covariate distributions and preterm birth and very preterm birth rates were examined. Decomposition methods for nonlinear outcomes based on logistic regression were used to quantify the extent to which black-white differences in covariates contributed to preterm birth and very preterm birth disparities. RESULTS: Covariate differences between black and white women were found within each category of geographic, sociodemographic, and health characteristics. However, not all covariates contributed substantially to the disparity. Close to 38% of the preterm birth and 31% of the very preterm birth disparity could be explained by black-white covariate differences. The largest contributors to the disparity included maternal education (preterm birth, 11.3%; very preterm birth, 9.0%), marital status/paternity acknowledgment (preterm birth, 13.8%; very preterm birth, 14.7%), source of payment for delivery (preterm birth, 6.2%; very preterm birth, 3.2%), and hypertension in pregnancy (preterm birth, 9.9%; very preterm birth, 8.3%). Interpregnancy interval contributed a more sizable contribution to the disparity (preterm birth, 6.2%, very preterm birth, 6.0%) in sensitivity analyses restricted to all nonfirstborn births. CONCLUSIONS: These findings demonstrate that the known portion of the disparity in preterm birth is driven by sociodemographic and preconception/prenatal health factors. Public health programs to enhance social support and preconception care, specifically focused on hypertension, may provide an efficient approach for reducing the racial gap in preterm birth.

Good practices for the design, analysis, and interpretation of observational studies on birth spacing and perinatal health outcomes.

BACKGROUND: Meta-analyses of observational studies have shown that women with a shorter interpregnancy interval (the time from delivery to start of a subsequent pregnancy) are more likely to experience adverse pregnancy outcomes, such as preterm delivery or small for gestational age birth, than women who space their births further apart. However, the studies used to inform these estimates have methodological shortcomings. METHODS: In this commentary, we summarise the discussions of an expert workgroup describing good practices for the design, analysis, and interpretation of observational studies of interpregnancy interval and adverse perinatal health outcomes. RESULTS: We argue that inferences drawn from research in this field will be improved by careful attention to elements such as: (a) refining the research question to clarify whether the goal is to estimate a causal effect vs describe patterns of association; (b) using directed acyclic graphs to represent potential causal networks and guide the analytic plan of studies seeking to estimate causal effects; (c) assessing how miscarriages and pregnancy terminations may have influenced interpregnancy interval classifications; (d) specifying how key factors such as previous pregnancy loss, pregnancy intention, and maternal socio-economic position will be considered; and (e) examining if the association between interpregnancy interval and perinatal outcome differs by factors such as maternal age. CONCLUSION: This commentary outlines the discussions of this recent expert workgroup, and describes several suggested principles for study design and analysis that could mitigate many potential sources of bias.

Title V Maternal and Child Health Services Block Grant Priority Needs and Linked Performance Measures: Current Patterns and Trends (2000-2015).

Objective As part of the Title V Maternal and Child Health (MCH) Services Block Grant, administered by the Health Resources and Services Administration's (HRSA's) Maternal and Child Health Bureau (MCHB), states are required to conduct a comprehensive needs assessment identifying MCH priorities every 5 years. The most current needs assessment (2015) occurred after a transformation of the program, in which a new performance measurement framework was created. This analysis examined current patterns and trends in state MCH priorities and selected performance measures to identify changing needs and inform technical support. Methods Multiple coders categorized: (1) state priority needs from 2000 to 2015 into focus areas and subcategories for examination of current, diminishing, and emerging needs; and (2) the selection of linked national and state performance measures in 2015 for all 59 states and jurisdictions. Results Between 2000 and 2015, the proportion of states with a need around pre- and inter-conception care increased from 19% to 66%. More states had needs in the breastfeeding subcategory (42%) compared with 20% of states or less in previous years. Fewer states had needs around data capacity than in past years. Emerging needs included supporting families/relationships. The most commonly selected national performance measures (NPMs) were around breastfeeding and well-woman visits. The state performance measures (SPMs) analysis also emphasized assets, with measures around community/context and positive development. Teen births and postpartum depression were areas where multiple states had SPMs. Conclusions for practice Increasing and emerging needs may help to inform technical assistance and future national measures for the Title V program.

Prevalence and Variation of Developmental Screening and Surveillance in Early Childhood.

Importance: Since 2001, the American Academy of Pediatrics has recommended universal developmental screening and surveillance to promote early diagnosis and intervention and to improve the outcomes of children with developmental delays and disabilities. Objective: To examine the current prevalence and variation of developmental screening and surveillance of children by various sociodemographic, enabling, and health characteristics. Design, Setting, and Participants: This cross-sectional analysis of the Health Resources and Services Administration's 2016 National Survey of Children's Health-a nationally representative survey of US children completed between June 2016 and February 2017-examined 5668 randomly selected children 9 through 35 months of age whose parent or caregiver responded to the address-based survey by mail or via a website. All analyses were weighted to account for the probability of selection and nonresponse and to reflect population counts of all noninstitutionalized US children residing in housing units. Main Outcomes and Measures: Developmental screening was measured through a validated set of 3 items indicating receipt in the past year of parent-completed screening from a health care professional with age-appropriate content regarding language development and social behavior. Surveillance was determined by an item capturing verbal elicitation of developmental concerns by a health care professional. Results: Of the estimated 9.0 million children aged 9 through 35 months, an estimated 30.4% (95% CI, 28.0%-33.0%) were reported by their parent or guardian to have received a parent-completed developmental screening and 37.1% (95% CI, 34.4%-39.8%) were reported to have received developmental surveillance from a health care professional in the past year. Characteristics associated with screening and/or surveillance that remained significant after adjustment included primary household language, family structure, household education, income, medical home, past-year preventive visit, child health status, and special health care needs. Having health care that meets medical home criteria was significantly associated with both developmental screening (adjusted rate ratio, 1.34; 95% CI, 1.13-1.57) and surveillance (adjusted rate ratio, 1.24; 95% CI, 1.08-1.42), representing an 8 to 9 absolute percentage point increase. State-level differences spanned 40 percentage points for screening (17.2% in Mississippi and 58.8% in Oregon) and surveillance (19.1% in Mississippi and 60.8% in Oregon), with approximately 90% of variation not explained by child and family characteristics. Conclusions and Relevance: Despite more than a decade of initiatives, rates of developmental screening and surveillance remain low. However, state-level variation indicates continued potential for improvement. Systems-level quality improvement efforts, building on the medical home, will be necessary to achieve recommended screening and surveillance goals.

The Collaborative Improvement and Innovation Network (CoIIN) to Reduce Infant Mortality: An Outcome Evaluation From the US South, 2011 to 2014.

OBJECTIVES: To evaluate the impact of the Southern Public Health Regions' (Regions IV and IV) Collaborative Improvement and Innovation Network (CoIIN) to Reduce Infant Mortality, supported by the US Health Resources and Services Administration. METHODS: We examined pre-post change (2011-2014) for CoIIN strategies with available outcome data from vital records (early elective delivery, smoking) and the Pregnancy Risk Assessment Monitoring System (safe sleep) as well as preterm birth and infant mortality for Regions IV and VI relative to all other regions. RESULTS: For most outcomes, CoIIN improvements were greater in Regions IV and VI than in other regions. For example, early elective delivery decreased by 22% versus 14% in other regions, smoking cessation during pregnancy increased by 7% versus 2%, and back sleep position increased by 5% versus 2%. Preterm birth decreased by 4%, twice that observed in other regions, but infant mortality reductions did not differ significantly. CONCLUSIONS: The CoIIN approach to public health improvement shows promise in accelerating progress in intermediate outcomes and preterm birth. Impact on infant mortality may require additional strategies and sustained efforts.

A new performance measurement system for maternal and child health in the United States.

OBJECTIVE: The Title V Maternal and Child Health (MCH) Block Grant is the linchpin for US MCH services. The first national performance measures (NPMs) for MCH were instituted in 1997. Changing trends in MCH risk factors, outcomes, health services, data sources, and advances in scientific knowledge, in conjunction with budgetary constraints led the Maternal and Child Health Bureau (MCHB) to design a new performance measurement system. METHODS: A workgroup was formed to develop a new system. The following guiding principles were used: (1) Afford States more flexibility and reduce the overall reporting burden; (2) Improve accountability to better document Title V's impact; (3) Develop NPMs that encompass measures in: maternal and women's health, perinatal health, child health, children with special health care needs, adolescent health, and cross-cutting areas. RESULTS: A three-tiered performance measurement system was proposed with national outcome measures (NOMs), NPMs and evidence-based/informed strategy measures (ESMs). NOMs are the ultimate goals that MCHB and States are attempting to achieve. NPMs are measures, generally associated with processes or programs, shown to affect NOMs. ESMs are evidence-based or informed measures that each State Title V program develops to affect the NPMs. There are 15 NPMs from which States select eight, with at least one from each population area. MCHB will provide the data for the NOMs and NPMs, when possible. CONCLUSIONS: The new performance measurement system increases the flexibility and reduces the reporting burden for States by allowing them to choose 8 NPMs to target, and increases accountability by having States develop actionable ESMs. SIGNIFICANCE: The new national performance measure framework for maternal and child health will allow States more flexibility to address their areas of greatest need, reduce their data reporting burden by having the Maternal and Child Health Bureau provide data for the National Outcome and Performance Measures, yet afford States the opportunity to develop measurable strategies to address their selected performance measures.

Financial and nonfinancial burden among families of CSHCN: changes between 2001 and 2009-2010.

OBJECTIVE: We use the latest data to explore multiple dimensions of financial burden among children with special health care needs (CSHCN) and their families in 2009-2010 and changes since 2001. METHODS: Five burden indicators were assessed using the 2001 and 2009-2010 National Surveys of CSHCN: past-year health-related out-of-pocket expenses of ≥$1,000 or ≥ 3% of household income; perceived financial problems; changes in family employment; and >10 hours of weekly care provision/coordination. Unadjusted and adjusted prevalence estimates were used to assess burden in 2009-2010 and calculate absolute and relative measures of change since 2001. Prevalence rate ratios for each burden type in 2009-2010 compared to 2001 were estimated by logistic regression. RESULTS: Nearly half of CSHCN and their families experienced some form of burden in 2009-2010. The percentage of CSHCN living in families that paid ≥$1,000 or ≥ 3% of household income out of pocket for health care rose 120% and 35%, respectively, between 2001 and 2009-2010, while the prevalence of caregiving and employment burdens declined. Relative to 2001, in 2009-2010, CSHCN who were privately insured or least affected by their conditions were 1.7 times as likely to live in families that paid ≥ 3% of household income out of pocket, while publicly insured children were 20% less likely to do so and those most severely affected were 12% more likely to do so. CONCLUSIONS: Over the past decade, increases in financial burden and declines in employment and caregiving burdens were observed for CSHCN families. Public insurance expansions may have buffered increases in financial burden, yet disparities persist.

Excess infant mortality among Native Hawaiians: identifying determinants for preventive action.

OBJECTIVES: We identified potential determinants and cause-specific sources of excess infant mortality among Native Hawaiians. METHODS: We compared infant mortality rates among Native Hawaiians and Whites by using data from the 2002 to 2009 Hawai'i State Linked Birth/Infant Death Cohort File. We evaluated the components of excess infant mortality by age and underlying cause of death as well as maternal sociodemographic, behavioral, and chronic condition disparities. RESULTS: The Native Hawaiian infant mortality rate was more than twice that for Whites (7.9 vs 3.5/1000 live births). Excess Native Hawaiian infant mortality was equally apportioned to neonatal and postneonatal deaths. Preterm-related causes of death accounted for 43.9% of the infant mortality disparity, followed by sudden unexpected infant death (21.6%) and injury (5.6%). In multivariable models, maternal educational inequality accounted for the largest portion of the neonatal mortality disparity (20.9%); younger maternal age (12.2%) and smoking (9.5%) were the only significant contributors to the postneonatal mortality disparity. CONCLUSIONS: Addressing educational inequalities, promoting safe sleep practices, and reducing smoking among Native Hawaiian mothers would help to eliminate excess infant mortality.