Patterns of primary and specialty care among children with sickle cell anemia.

BACKGROUND AND OBJECTIVE: National guidelines recommend that children with sickle cell anemia (SCA) be seen regularly by primary care providers (PCPs) as well as hematologists to receive comprehensive, multidisciplinary care. The objective is to characterize the patterns of primary and hematology care for children with SCA in Michigan. METHODS: Using validated claims definitions, children ages 1-17 years with SCA were identified using Michigan Medicaid administrative claims from 2010 to 2018. We calculated the number of outpatient PCP and hematologist visits per person-year, as well as the proportion of children with at least one visit to a PCP, hematologist, or both a PCP and hematologist annually. Negative binomial regression was used to calculate annual rates of visits for each provider type. RESULTS: A total of 875 children contributed 2889 person-years. Of the total 22,570 outpatient visits, 52% were with a PCP and 34% with a hematologist. Annually, 87%-93% of children had a visit with a PCP, and 63%-85% had a visit with a hematologist. Approximately 66% of total person-years had both visit types within a year. The annual rate ranged from 2.3 to 2.5 for hematologist visits and from 3.7 to 4.1 for PCP visits. CONCLUSIONS: Substantial gaps exist in the receipt of annual hematology care. Given that the majority of children with SCA see a PCP annually, strategies to leverage primary care visits experienced by this population may be needed to increase receipt of SCA-specific services.

Spanish-Speaking Caregiver Preferences for Social Determinants of Health Screening.

Equitable social determinants of health (SDOH) screening has been recommended by the Centers for Medicare & Medicaid Services and the Joint Commission; however, little is known about Spanish-speaking caregiver preferences on how they would like to be screened. We conducted a cross-sectional study at 3 pediatric clinics (October-December 2019). Caregivers completed (in English or Spanish) an SDOH screening preferences survey. Three hundred eighty-two of 443 caregivers approached (response rate = 86.2%) completed the survey. Most were female, preferred Spanish, and completed only high school. Spanish-speaking caregivers had greater odds of preferring verbal SDOH screening (odds ratio: 4.1; 95% confidence interval, 1.8-9.2) than English-speaking caregivers. Verbal SDOH screening should be a consideration in families who speak Spanish. Future studies should utilize qualitative methods to further explore Spanish-speaking caregiver preferences for SDOH screening.

Identifying drivers of cost in pediatric liver transplantation.

Understanding the economics of pediatric liver transplantation (LT) is central to high-value care initiatives. We examined cost and resource utilization in pediatric LT nationally to identify drivers of cost and hospital factors associated with greater total cost of care. We reviewed 3295 children (<21 y) receiving an LT from 2010 to 2020 in the Pediatric Health Information System to study cost, both per LT and service line, and associated mortality, complications, and resource utilization. To facilitate comparisons, patients were stratified into high-cost, intermediate-cost, or low-cost tertiles based on LT cost. The median cost per LT was $150,836 [IQR $104,481-$250,129], with marked variance in cost within and between hospital tertiles. High-cost hospitals (HCHs) cared for more patients with the highest severity of illness and mortality risk levels (67% and 29%, respectively), compared to intermediate-cost (60%, 21%; p <0.001) and low-cost (51%, 16%; p <0.001) hospitals. Patients at HCHs experienced a higher prevalence of mechanical ventilation, total parental nutrition use, renal comorbidities, and surgical complications than other tertiles. Clinical (27.5%), laboratory (15.1%), and pharmacy (11.9%) service lines contributed most to the total cost. Renal comorbidities ($69,563) and total parental nutrition use ($33,192) were large, independent contributors to total cost, irrespective of the cost tertile ( p <0.001). There exists a significant variation in pediatric LT cost, with HCHs caring for more patients with higher illness acuity and resource needs. Studies are needed to examine drivers of cost and associated outcomes more granularly, with the goal of defining value and standardizing care. Such efforts may uniquely benefit the sicker patients requiring the strategic resources located within HCHs to achieve the best outcomes.

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.

Inadequacy of Current Screening Measures for Health-Related Social Needs.

This Viewpoint discusses recently established quality measures designed to screen patients for health-related social needs and how they may not only come up short, but impede progress in health equity.

Racial Discrimination in Late Adolescence and Mental Health Outcomes Among Participants in the Panel Study of Income Dynamics.

PURPOSE: To assess whether racial discrimination experienced at ages 18-21 years is associated with psychological distress and well-being, and investigate potential moderators of this relationship. METHODS: We used panel data collected from 2005 to 2017 from 661 participants in the Transition into Adulthood Supplement of the Panel Study of Income Dynamics. The Everyday Discrimination Scale measured racial discrimination. The Kessler six and Mental Health Continuum Short Form assessed psychological distress and well-being, respectively. Generalized linear mixed modeling was used to model outcomes and test potential moderating variables. RESULTS: Approximately 25% of participants experienced high levels of racial discrimination. In analyses of panel data, these participants had significantly worse psychological distress (odds ratio = 6.04, 95% confidence interval: 3.41, 8.67) and lower levels of emotional well-being (odds ratio = 4.61, 95% confidence interval: 1.87, 7.36) compared to those who did not. Race and ethnicity moderated the relationship. DISCUSSION: Exposure to racial discrimination in late adolescence was associated with worse mental health outcomes. This study has important implications for interventions addressing the need for mental health support that is critical for adolescents who experience racial discrimination.

Psychologists as leaders in equitable science: Applications of antiracism and community participatory strategies in a pediatric behavioral medicine clinical trial.

Psychologists have an ethical responsibility to advance health equity and can play a significant role in improving health care experiences for families racialized as Black, including those with sickle cell disease (SCD), a group of genetic blood disorders primarily affecting communities of color. Parents of children with SCD report experiences of stigma and discrimination due to racism in the health care system. The current commentary describes the application of antiracism and participatory strategies to the research design, implementation, and dissemination of a behavioral medicine clinical trial (Engage-HU; NCT03442114) of shared decision-making (SDM) for pediatric patients with SCD, including (a) the development of a research question to promote justice for racialized groups; (b) a focus on "redressing imbalances" through SDM and a multidisciplinary, inclusive research team led by a Black psychologist; (c) community participatory approaches through the integration of stakeholder feedback across the study; and (d) centering context by attending to structural realities in response to the COVID-19 and racism pandemics. With attention to the fact that most primary caregivers of children with SCD are Black women, an intersectionality lens was applied. Implications and considerations for psychologists working to advance health equity in medical settings are also discussed. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Creating Healing-Centered Health Systems by Reimagining Social Needs Screening and Supports.

This Viewpoint describes how pediatric health care systems can use health-related social needs screening implementation as an opportunity to reimagine more healing-centered systems.

Antibiotic Use Without a Prescription: A Multisite Survey of Patient, Health System, and Encounter Characteristics.

BACKGROUND: Using antibiotics without a prescription is potentially unsafe and may increase the risk of antimicrobial resistance. We evaluated the effect of patient, health system, and clinical encounter factors on intention to use antibiotics without a prescription that were (1) purchased in the United States, (2) obtained from friends or relatives, (3) purchased abroad, or (4) from any of these sources. METHODS: The survey was performed January 2020-June 2021 in 6 publicly funded primary care clinics and 2 private emergency departments in Texas, United States. Participants included adult patients visiting 1 of the clinical settings. Nonprescription use was defined as use of antibiotics without a prescription; intended use was professed intention for future nonprescription antibiotic use. RESULTS: Of 564 survey respondents (33% Black and 47% Hispanic or Latino), 246 (43.6%) reported prior use of antibiotics without a prescription, and 177 (31.4%) reported intent to use antibiotics without a prescription. If feeling sick, respondents endorsed that they would take antibiotics obtained from friends/relatives (22.3% of 564), purchased in the United States without a prescription (19.1%), or purchased abroad without a prescription (17.9%). Younger age, lack of health insurance, and a perceived high cost of doctor visits were predictors of intended use of nonprescription antibiotics from any of the sources. Other predictors of intended use were lack of transportation for medical appointments, language barrier to medical care, Hispanic or Latino ethnicity, and being interviewed in Spanish. CONCLUSIONS: Patients without health insurance who report a financial barrier to care are likely to pursue more dangerous nonprescription antimicrobials. This is a harm of the US fragmented, expensive healthcare system that may drive increasing antimicrobial resistance and patient harm.

Faculty Perspectives on Diversity, Equity, and Inclusion: Building a Foundation for Pediatrics.

ABSTRACT: Pediatric departments and children's hospitals (hereafter pediatric academic settings) increasingly promote the tenets of diversity, equity, and inclusion (DEI) as guiding principles to shape the mission areas of clinical care, education, research, and advocacy. Integrating DEI across these domains has the potential to advance health equity and workforce diversity. Historically, initiatives toward DEI have been fragmented with efforts predominantly led by individual faculty or subgroups of faculty with little institutional investment or strategic guidance. In many instances, there is a lack of understanding or consensus regarding what constitutes DEI activities, who engages in DEI activities, how faculty feel about their engagement, and what is an appropriate level of support. Concerns also exist that DEI work falls disproportionately to racial and ethnic groups underrepresented in medicine, exacerbating what is termed the minority tax. Despite these concerns, current literature lacks quantitative data characterizing such efforts and their potential impact on the minority tax. As pediatric academic settings invest in DEI programs and leadership roles, there is imperative to develop and use tools that can survey faculty perspectives, assess efforts, and align DEI efforts between academic faculty and health systems. Our exploratory assessment among academic pediatric faculty demonstrates that much of the DEI work in pediatric academic settings is done by a small number of individuals, predominantly Black faculty, with limited institutional support or recognition. Future efforts should focus on expanding participation among all groups and increasing institutional engagement.

TCD screening and spending among children with sickle cell anemia.

OBJECTIVES: National guidelines recommend that children with sickle cell anemia receive annual transcranial Doppler (TCD) screening to assess stroke risk. Our objectives were to estimate the rate of TCD screening among privately insured children with sickle cell anemia, estimate out-of-pocket spending for TCD screening, and evaluate the association between TCD screening and enrollment in high-deductible health plans (HDHPs). STUDY DESIGN: Cross-sectional. METHODS: Using the 2009-2017 IBM MarketScan Commercial Database, we identified children aged 2 to 15 years who met a validated claims-based definition of sickle cell anemia. We calculated the proportion of children receiving annual TCD screening and out-of-pocket spending per TCD screen. Using logistic regression with generalized estimating equations, we modeled the receipt of annual TCD screening as a function of HDHP enrollment, controlling for demographics and year. RESULTS: The 2519 children in the analysis accounted for 7197 person-years of enrollment; 14% of person-years were from HDHP enrollees. During 2009-2017, the proportion of children receiving TCD screening ranged from 40% to 44%. Median out-of-pocket spending for TCD screening was $20 overall and $65 among HDHP enrollees. Out-of-pocket spending exceeded $100 for 27% of all screens and 42% of screens among HDHP enrollees. HDHP enrollment was not associated with TCD screening (adjusted odds ratio, 0.99; 95% CI, 0.85-1.15). CONCLUSIONS: Among privately insured children with sickle cell anemia, fewer than half received annual TCD screening. Out-of-pocket spending exceeded $100 for 27% of TCD screens. Although HDHP enrollment was not associated with TCD screening, additional studies are needed to assess whether cost sharing might deter this screening.

Asthma outcomes in pediatric patients with 30-day follow-up after an asthma hospitalization in a Medicaid-managed care program.

BACKGROUND: National asthma guidelines recommend an outpatient follow-up after hospitalization for asthma. Our aim is determine if a follow-up visit within 30 days after an asthma hospitalization impacts risk for re-hospitalization and emergency department visits for asthma within the following year. METHODS: This was a retrospective cohort study of claims data of Texas Children's Health Plan (a Medicaid managed care program) members age 1 to <18 years and hospitalized for asthma between January 1, 2012, and December 31, 2018. Primary outcomes were days to re-hospitalization and emergency department visit between 30 days and 365 days following the index hospitalization. RESULTS: We identified 1,485 children age 1 to <18 years hospitalized for asthma. Comparing those with a 30 day follow-up to those without, there was no difference in days to re-hospitalization (adjusted hazard ratio 1.23, 95% Confidence Interval (CI) 0.74-2.06) or emergency department visit for asthma (aHR 1.08, 95% CI 0.88-1.33). Inhaled corticosteroid and short acting beta agonist dispensing were greater in the group completing the 30 day follow-up (means of 2.8 and 4.8 respectively for those with follow-up, 1.6 and 3.5 respectively for those without, p < 0.0001). CONCLUSION: Having a follow-up outpatient visit within 30 days of an asthma hospitalization is not associated with a decrease in asthma re-hospitalization or emergency department visit in the 30-365 day period following the index hospitalization. Non-adherence to regular use of inhaled corticosteroid medication was high in both groups. These findings suggest need for improvement in the quality and quantity of post hospital asthma follow-up.

Social Needs Screening in Hospitalized Pediatric Patients: A Randomized Controlled Trial.

BACKGROUND AND OBJECTIVE: Addressing adverse social determinants of health is an upstream approach to potentially improve child health outcomes and health equity. We aimed to determine if systematically screening and referring for social needs in hospitalized pediatric patients increased families' enrollment in publicly available resources. METHODS: Randomized controlled trial at a large urban children's hospital enrolled English-speaking caregivers of patients 0 to 36 months of age on the general pediatrics service from June 2016 to July 2017. The intervention arm received the WE CARE Houston social needs intervention (screener and resource referrals based on screening results and receptiveness to help); the control arm received standard of care. Baseline social risk data were collected for all participants. Caregivers who screened positive for mental health need, substance abuse, or domestic violence received additional support, including from social workers. The primary outcome was enrollment in resources at 6 months postdischarge. Univariate and multivariable analysis was performed to identify associations. RESULTS: Our study sample consisted of 413 caregivers from diverse sociodemographic/socioeconomic backgrounds. Overall, 85% of study participants had ≥1 social risk (median 2, range 0-9). WE CARE Houston identified caregiver employment, health insurance, primary care physician, depression, childcare, smoking, and food resources as the most prevalent social needs. Among these, caregivers were most receptive to resources for childcare, mental health, health insurance, and primary care. There was no significant difference in enrollment in new resources by study arm. CONCLUSION: Screening for social needs in the hospital is feasible and can result in the identification of social needs, but further work is needed to successfully address these needs.

Translating Research into Child Health Policy: Aligning Incentives and Building a New Discourse.

Research has led to major achievements in public policy and child health. Despite the gains, the need for research to inform policy remains paramount against a backdrop of inadequate public health investments, health inequities, and public skepticism toward science. However, the translation of research into child health policy has often been slow due to misalignments in incentives between researchers and policy makers and a paucity of conceptual models to inform translation. This article outlines barriers to translation, provides examples of discordance between evidence and policy, summarizes models to inform translation, and offers strategies to improve translation of research to policy.