Adolescents With Inflammatory Bowel Disease Have Decreased Rates of Health Maintenance Visits.

INTRODUCTION: Inflammatory bowel disease (IBD) commonly presents during adolescence and may affect health care utilization. This study aimed to assess rates of health maintenance examinations (HMEs) in adolescents with IBD with their primary care physicians (PCPs). METHODS: This is a single center, case-control study of adolescents with IBD who received their IBD care and primary care within the same healthcare system. Adolescents diagnosed with IBD between 13 and 17 years of age were matched 1:1 by age, gender, race/ethnicity, and insurance status to healthy controls. Patient demographics, IBD characteristics, and health outcomes were extracted from the medical record. HME rate was defined as having one HME with a PCP during a 12-month period. RESULTS: This study included 150 IBD-control matched pairs. HME rates were similar at baseline between cases and controls (83% vs 85%, P = 0.53) but approached significance in year 1 post-diagnosis (77% vs 85%, P = 0.056). In year 2 post-diagnosis, IBD patients had less frequent HME (62% vs 74%, P = 0.0486). Disease severity did not affect HME rates. IBD patients from under-represented minority groups had lower rates than matched controls (46.2% vs 91.7%, P = 0.03). Meningococcal and human papilloma vaccination rates were lower in cases versus controls (79% vs 94%, P = 0.0005 and 60% vs 84%, P < 0.0001). CONCLUSION: Adolescents with IBD have less frequent HME and lower rates of certain vaccinations than their peers. Those from underrepresented minority groups are at particular risk. Given the important issues addressed at HMEs, gastroenterologists should recommend that adolescents with IBD have ongoing PCP engagement to optimize health outcomes.

Healthcare access and adverse family impact among U.S. children ages 0-5 years by prematurity status.

BACKGROUND: Many children and their families are affected by premature birth. Yet, little is known about their healthcare access and adverse family impact during early childhood. This study aimed to (1) examine differences in healthcare access and adverse family impact among young children by prematurity status and (2) determine associations of healthcare access with adverse family impact among young children born prematurely. METHODS: This was a secondary analysis of cross-sectional 2016 and 2017 National Survey of Children's Health data. The sample included 19,482 U.S. children ages 0-5 years including 242 very low birthweight (VLBW) and 2205 low birthweight and/or preterm (LBW/PTB) children. Prematurity status was defined by VLBW (i.e., < 1500 g at birth) and LBW/PTB (i.e., 1500-2499 g at birth and/or born at < 37 weeks with or without LBW). Healthcare access measures were adequate health insurance, access to medical home, and developmental screening receipt. Adverse family impact measures were ≥ $1000 in annual out-of-pocket medical costs, having a parent cut-back or stop work, parental aggravation, maternal health not excellent, and paternal health not excellent. The relative risk of each healthcare access and adverse family impact measure was computed by prematurity status. Propensity weighted models were fit to estimate the average treatment effect of each healthcare access measure on each adverse family impact measure among children born prematurely (i.e., VLBW or LBW/PTB). RESULTS: Bivariate analysis results showed that VLBW and/or LBW/PTB children generally fared worse than other children in terms of medical home, having a parent cut-back or stop working, parental aggravation, and paternal health. Multivariable analysis results only showed, however, that VLBW children had a significantly higher risk than other children of having a parent cut-back or stop work. Adequate health insurance and medical home were each associated with reduced adjusted relative risk of ≥$1000 in annual out-of-pocket costs, having a parent cut-back or stop work, and parental aggravation among children born prematurely. CONCLUSIONS: This study's findings demonstrate better healthcare access is associated with reduced adverse family impact among U.S. children ages 0-5 years born prematurely. Population health initiatives should target children born prematurely and their families.

Adolescents' use of the built environment for physical activity.

BACKGROUND: Physical activity is a health-enhancing behavior, but few adolescents achieve the recommended levels of moderate-to-vigorous physical activity. Understanding how adolescents use different built environment spaces for physical activity and activity varies by location could help in designing effective interventions to promote moderate-to-vigorous physical activity. The objective of this study was to describe the locations where adolescents engage in physical activity and compare traditional intensity-based measures with continuous activity when describing built environment use patterns among adolescents. METHODS: Eighty adolescents aged 11-14 years recruited from community health and recreation centers. Adolescents wore accelerometers (Actigraph GT3X) and global positioning system receivers (QStarz BT-Q1000XT) for two separate weeks to record their physical activity levels and locations. Accelerometer data provided a continuous measure of physical activity and intensity-based measures (sedentary time, moderate-to-vigorous physical activity). Physical activity was mapped by land-use classification (home, school, park, playground, streets & sidewalks, other) using geographic information systems and this location-based activity was assessed for both continuous and intensity-based physical activity derived from mixed-effects models which accounted for repeated measures and clustering effects within person, date, school, and town. RESULTS: Mean daily moderate-to-vigorous physical activity was 22 minutes, mean sedentary time was 134 minutes. Moderate-to-vigorous physical activity occurred in bouts lasting up to 15 minutes. Compared to being at home, being at school, on the streets and sidewalks, in parks, and playgrounds were all associated with greater odds of being in moderate-to-vigorous physical activity and achieving higher overall activity levels. Playground use was associated with the highest physical activity level (ß = 172 activity counts per minute, SE = 4, p < 0.0001) and greatest odds of being in moderate-to-vigorous physical activity (odds ratio 8.3, 95% confidence interval 4.8-14.2). CONCLUSION: Adolescents were more likely to engage in physical activity, and achieved their highest physical activity levels, when using built environments located outdoors. Novel objective methods for determining physical activity can provide insight into adolescents' spatial physical activity patterns, which could help guide physical activity interventions. Promoting zoning and health policies that encourage the design and regular use of outdoor spaces may offer another promising opportunity for increasing adolescent physical activity.

Decision analysis, economic evaluation, and newborn screening: challenges and opportunities.

The number of conditions included in newborn screening panels has increased rapidly in the United States during the past decade, and many more conditions are under consideration for addition to state panels. The rare nature of candidate conditions for newborn screening makes their evaluation challenging. The scarcity of data on the costs of screening, follow-up, treatment, and long-term disability must be addressed to improve the evaluation process for nominated conditions. Decision analyses and economic evaluations can help inform policy decisions for newborn screening programs by providing a systematic approach to synthesizing available evidence and providing projected estimates of long-term clinical and economic outcomes when long-term data are not available. In this review, we outline the types of data required for the development of decision analysis and cost-effectiveness models for newborn screening programs and discuss the challenges faced when applying these methods in the arena of newborn screening to help inform policy decisions.Genet Med advance online publication 5 April 2012.

Barriers to specialty care and specialty referral completion in the community health center setting.

OBJECTIVE: To assess the frequency of barriers to specialty care and to assess which barriers are associated with an incomplete specialty referral (not attending a specialty visit when referred by a primary care provider) among children seen in community health centers. STUDY DESIGN: Two months after their child's specialty referral, 341 parents completed telephone surveys assessing whether a specialty visit was completed and whether they experienced any of 10 barriers to care. Family/community barriers included difficulty leaving work, obtaining childcare, obtaining transportation, and inadequate insurance. Health care system barriers included getting appointments quickly, understanding doctors and nurses, communicating with doctors' offices, locating offices, accessing interpreters, and inconvenient office hours. We calculated barrier frequency and total barriers experienced. Using logistic regression, we assessed which barriers were associated with incomplete referral, and whether experiencing ≥ 4 barriers was associated with incomplete referral. RESULTS: A total of 22.9% of families experienced incomplete referral. 42.0% of families encountered 1 or more barriers. The most frequent barriers were difficulty leaving work, obtaining childcare, and obtaining transportation. On multivariate analysis, difficulty getting appointments quickly, difficulty finding doctors' offices, and inconvenient office hours were associated with incomplete referral. Families experiencing ≥ 4 barriers were more likely than those experiencing ≤ 3 barriers to have incomplete referral. CONCLUSION: Barriers to specialty care were common and associated with incomplete referral. Families experiencing many barriers had greater risk of incomplete referral. Improving family/community factors may increase satisfaction with specialty care; however, improving health system factors may be the best way to reduce incomplete referrals.

The Unique Value Proposition of Pediatric Health Care.

This document provides a framework for the value proposition of pediatric health care. It is intended to provide a succinct set of principles for establishing this proposition that demonstrates the short- and long-term value to the child and family, the health care system, and society as a whole.

Medicaid and the Children's Health Insurance Program: Optimization to Promote Equity in Child and Young Adult Health.

The American Academy of Pediatrics envisions a child and adolescent health care system that provides individualized, family-centered, equitable, and comprehensive care that integrates with community resources to help each child and family achieve optimal growth, development, and well-being. All infants, children, adolescents, and young adults should have access to this system. Medicaid and the Children's Health Insurance Program (CHIP) provide critical support and foundation for this vision. Together, the programs currently serve about half of all children, many of whom are members of racial and ethnic minoritized populations or have complex medical conditions. Medicaid and CHIP have greatly improved the health and well-being of US infants, children, adolescents, and young adults. This statement reviews key program aspects and proposes both program reforms and enhancements to support a higher-quality, more comprehensive, family-oriented, and equitable system of care that increases access to services, reduces disparities, and improves health outcomes into adulthood. This statement recommends foundational changes in Medicaid and CHIP that can improve child health, achieve greater equity in health and health care, further dismantle structural racism within the programs, and reduce major state-by-state variations. The recommendations focus on (1) eligibility and duration of coverage; (2) standardization of covered services and quality of care; and (3) program financing and payment. In addition to proposed foundational changes in the Medicaid and CHIP program structure, the statement indicates stepwise, coordinated actions that regulation from the Centers for Medicare and Medicaid Services or federal legislation can accomplish in the shorter term. A separate technical report will address the origins and intents of the Medicaid and CHIP programs; the current state of the program including variations across states and payment structures; Medicaid for special populations; program innovations and waivers; and special Medicaid coverage and initiatives.

Mental Health of Caregivers of Children with Medical Complexity During COVID-19.

OBJECTIVE: The purpose of this study is to investigate the relationship between mental health and financial burden among caregivers of children with medical complexity (CMC) during the COVID-19 pandemic. METHODS: We conducted a cross-sectional survey on the mental health and financial burden of caregivers of CMC from April 2020 to April 2021. The study sample included 70 caregivers. We analyzed the association between caregiver mental health and caregiver demographics and child characteristics through bivariate linear regressions. We then used multivariate linear regression to assess the association between caregiver mental health and caregiver financial burden adjusting for significant covariates from our bivariate analysis. RESULTS: Caregivers reported lower mental health scores (56.2) and higher financial burden scores (15.5) than reference population means: (72.6; SD 20.2) and (10.4; SD 2.2), respectively. Financial burden [-3.4; p = 0.0003; CI: -5.1 to -1.6] and child age [-0.1; p = 0.02; CI: 0.2-1.8] were significantly associated with caregiver mental health in our bivariate analysis. In our multivariate analysis, caregivers with an increased financial burden had lower mental health scores [-3.0; p = 0.002; CI: -4.8 to -1.2]. CONCLUSION: Caregivers of children with medically complex conditions experienced more mental health symptoms and greater financial burdens than normative samples during the COVID-19 pandemic. Parents with a greater financial burden also tend to have more mental health issues. Eligibility for financial assistance should include financial burden and income when providing help to families in this population. Local and national stakeholders should consider the provision of financial help in their quest to improve the mental health of caregivers.

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. We used International Classification of Disease-10 diagnosis code categories from Agency for Healthcare Research and Quality's Chronic Condition Indicator System to identify chronic mental and physical health conditions. RESULTS: Median (interquartile range [IQR]) annual encounter days was 6 (2-13). Children in the 91st to 98th and ≥99th percentiles for encounter days experienced a median of 49 (IQR 38-70) and 229 (IQR 181, 309) days, respectively; these children accounted for 52.6% of days for the cohort. As encounter days increased from the 25th to >90th percentile, the percentage of children with co-existing mental and physical health conditions increased from <0.1% to 47.4% (P < .001). Outpatient visits accounted for a total of 68.3% and 62.2% of days for children the 91st to 98th and ≥99th percentiles. CONCLUSION: Ten percent of children enrolled in Medicaid averaged health care encounters at least 1 day per week; 1% experienced health care encounters on most weekdays. Further investigation is needed to understand how families perceive frequent health care encounters, including how to facilitate their children's care in the most feasible way.

Impact of type 1 diabetes mellitus on the family is reduced with the medical home, care coordination, and family-centered care.

OBJECTIVES: To examine whether the medical home, care coordination, or family-centered care was associated with less impact of type 1 diabetes mellitus (T1D) on families' work, finances, time, and school attendance. STUDY DESIGN: With the 2005 to 2006 National Survey of Children with Special Health Care Needs, we compared impact in children with T1D (n = 583) with that in children with other special health care needs (n = 39 944) and children without special health care needs (n = 4945). We modeled the associations of the medical home, care coordination, and family-centered care with family impact in T1D. RESULTS: Seventy-five percent of families of children with T1D reported a major impact compared with 45% of families of children with special health care needs (P < .0001) and 17% of families of children without special health care needs (P < .0001). In families of children with T1D, 35% reported restricting work, 38% reported financial impact, 41% reported medical expenses >$1000/year, 24% reported spending ≥11 hours/week caring or coordination care, and 20% reported ≥11 school absences/year. The medical home, care coordination, and family-centered care were associated with less work and financial impact. CONCLUSIONS: In childhood T1D, most families experience major impact. Better systems of health care delivery may help families reduce some of this impact.

Underinsurance Among Children in the United States.

OBJECTIVES: We describe the change in the percentage of children lacking continuous and adequate health insurance (underinsurance) from 2016 to 2019. We also examine the relationships between child health complexity and insurance type with underinsurance. METHODS: Secondary analysis of US children in the National Survey of Children's Health combined 2016-2019 dataset who had continuous and adequate health insurance. We calculated differences in point estimates, with 95% confidence intervals (CIs), to describe changes in our outcomes over the study period. We used multivariable logistic regression adjusted for sociodemographic characteristics and examined relationships between child health complexity and insurance type with underinsurance. RESULTS: From 2016 to 2019, the proportion of US children experiencing underinsurance rose from 30.6% to 34.0% (+3.4%; 95% CI, +1.9% to +4.9%), an additional 2.4 million children. This trend was driven by rising insurance inadequacy (24.8% to 27.9% [+3.1%; 95% CI, +1.7% to +4.5%]), which was mainly experienced as unreasonable out-of-pocket medical expenses. Although the estimate of children lacking continuous insurance coverage rose from 8.1% to 8.7% (+0.6%), it was not significant at the 95% CI (-0.5% to +1.7%). We observed significant growth in underinsurance among White and multiracial children, children living in households with income ≥200% of the federal poverty limit, and those with private health insurance. Increased child health complexity and private insurance were significantly associated with experiencing underinsurance (adjusted odds ratio, 1.9 and 3.5, respectively). CONCLUSIONS: Underinsurance is increasing among US children because of rising inadequacy. Reforms to the child health insurance system are necessary to curb this problem.

Association of Neighborhood Characteristics With Pediatric Asthma.

OBJECTIVE: To examine associations between neighborhood characteristics and asthma prevalence and severity among low-income children in a large nationally representative sample. METHODS: Data source: 2018 National Survey of Children's Health, limited to low-income children, ages 0-17 years. We grouped parent responses about neighborhood characteristics into 5 scores: neighborhood support, safety, resources and quality, and a total score. Logistic regression compared rates and severity of asthma by neighborhood scores, adjusting for age, sex, race, and income. RESULTS: Of 8,653 low-income children, those living in neighborhoods with better total neighborhood scores were significantly less likely to have parent-reported asthma; OR = 0.9, 95% CI: 0.8-1.0; P = .02, with similar findings for children living in neighborhoods with higher support, safety, and quality scores. We found no associations between neighborhood scores and asthma severity in this population. CONCLUSIONS: Favorable neighborhoods are associated with lower parent-reported asthma prevalence in low-income children but not asthma severity. These data may support providers and policy makers interested in child asthma in addressing neighborhood improvement.

Emergency Department Utilization of Adolescents and Young Adults with Autism Spectrum Disorder.

This study examined emergency department (ED) utilization by adolescents and young adults, 12-30 years of age (AYA) with autism spectrum disorder (ASD) using the 2016 Healthcare Cost and Utilization Project/National Emergency Department Sample (HCUP/NEDS). We investigated the principal reason for an ED visit, presence of an ambulatory care sensitive condition (ACSC), and likelihood of hospital admission following ED encounter in ASD and Non-ASD cohorts. The ASD cohort had a higher proportion of ED visits for ACSC diagnoses as compared to the Non-ASD cohort. In addition, the likelihood of admission following an ED visit in the ASD cohort was 3.7 times greater than in the Non-ASD cohort.

Moving From Spending to Investment: A Research Agenda for Improving Health Care Financing for Children and Youth With Special Health Care Needs.

Children and youth with special health care needs (CYSHCN) use disproportionately more health care resources than non-CYSHCN, and their unique needs merit additional consideration. Spending on health care in the United States is heavily concentrated on acute illnesses through fee-for-service (FFS). Payment reform frameworks have focused on shifting away from FFS, addressing health outcomes and the experience of care while lowering costs, particularly for high resource utilizers. The focus of payment reform efforts to date has been on adults with chronic illnesses, with less priority given to investment in children's health and life course. Spending for children's health is also considered an investment in their growth and development with long-term outcomes at stake, so research questions should focus on where and how such spending should be targeted. This paper discusses high-priority research topics in the area of health care financing for CYSHCN in the context of what is currently known and important knowledge gaps related to investment for CYSHCN. It proceeds to describe 3 potential research projects that can address these topics, following a framework informed by the priority questions identified in a previous multistakeholder research agenda development process. We focus on 3 areas: benefits, payment models, and quality measures. Specific aims and hypotheses are offered, as well as suggestions for approaches and thoughts on potential implications.

What Types of Hospitals Do Adolescents and Young Adults With Complex Chronic Conditions Use?

BACKGROUND AND OBJECTIVE: Hospitalizations for children with complex chronic conditions (CCC) at pediatric hospitals have risen over time. Little is known about what hospital types, pediatric or adult, adolescents, and young adults (AYA) with CCCs use. We assessed the types of hospitals used by AYAs with CCCs. METHODS: We performed a cross-sectional study of 856,120 hospitalizations for AYAs ages 15-to-30 years with ≥1 CCC in the 2017 National Inpatient Sample. We identified AYA with CCC by ICD-10-CM diagnosis codes using the pediatric CCC classification system version 2. Hospital types included pediatric hospitals (n = 70), adult hospitals with pediatric services (n = 277), and adult hospitals without pediatric services (n = 3975). We analyzed age trends by hospital type and CCC count in 1-year intervals and dichotomously (15-20 vs 21-30 years) with the Cochran-Armitage test. RESULTS: The largest change in pediatric hospitals used by AYA with CCCs occurred between 15 and 20 years with 39.7% versus 7.7% of discharges respectively (P< 0.001). For older AYA (21 to 30 years), 1.0% of discharges occurred at pediatric hospitals, compared with 65.6% at adult hospitals without pediatric services (P < 0.001). Older AYA at pediatric hospitals had more technology dependence (42.5%) versus younger AYA (27.6%, p < 0.001). CONCLUSIONS: Most discharges for AYAs ≥21 years with CCCs were from adult hospitals without pediatric services. Higher prevalence of technology dependence and neuromuscular CCCs, as well as multiple CCCs, for AYA 21-to-30 years discharged from pediatric hospitals may be related to specific care needs only found in pediatric settings and challenges transferring into adult hospital care.