Characterizing medical decision-making in sickle cell disease during childhood: Qualitative perspectives of caregivers.

INTRODUCTION: Sickle cell disease (SCD) is the most common genetic disorder among children. As the most common type of SCD, sickle cell anemia (SCA) is associated with severe complications across the lifespan. As parents/caregivers hold primary disease management responsibility during childhood, their involvement in disease management activities, including medical decision-making, is critical to successful and timely management of pediatric SCD. However, the processes through which caregivers make SCD-related decisions remain unknown. The current paper examined caregivers' decision-making processes and priorities when managing their child's SCD. METHODS: Parents and primary caregivers (N = 27) of children with SCA (ages 0-12) completed individual semi-structured qualitative interviews exploring links between caregivers' decision-making and both daily and ongoing SCA management practices. Data were transcribed verbatim, cleaned, systematically coded, and analyzed using applied thematic analysis. RESULTS: Participating caregivers were primarily Black or African American (88.9%), mothers (81.5%), publicly insured (55.6%), and single (51.9%). Caregivers described medical decision-making across acute symptom response, preventive disease management, and treatment initiation and/or discontinuation. Across these contexts of disease management, caregivers overarchingly prioritized protecting and improving their child's quality of life. Caregivers' medical decision-making processes were influenced by their SCA management experience, acquisition of SCA knowledge, and trust in medical providers. The extent to which these influences impacted caregivers' decision-making varied based on disease severity, disease management experience, and time since diagnosis. DISCUSSION: Findings highlight how processes underlying caregivers' decision-making are directly influenced and informed by caregivers' lived experiences. Future work should develop provider-initiated collaborative interventions to support medical decision-making.

Sociodemographic and clinical indicators of children and young people with cerebral palsy and reported unmet social needs.

AIM: To determine the frequency, type, clinical, and sociodemographic associations of unmet social needs in children with cerebral palsy (CP). METHOD: We conducted a cross-sectional study of parents and carers of children with CP attending a specialist hospital clinic between July and September 2022. Unmet social needs were self-identified using a survey, guided by the WE CARE survey instrument and adapted to the local context. Sociodemographic and clinical data were obtained from medical records. We performed descriptive analysis of participants' unmet social needs, sociodemographic factors, and clinical factors, and examined for associations using a χ2 test and logistic regression. RESULTS: A total of 105 parents and carers completed the survey. Of these, 68 (64.8%) reported one or more unmet social need, with 24 (22.9%) reporting three or more unmet needs. A higher number (three or more) of unmet needs was associated with Gross Motor Function Classification System levels IV and V (odds ratio [OR] = 3.77, 95% confidence interval [CI] = 1.44-9.86) and intellectual disability (OR = 4.63, 95% CI = 1.61-13.31), but were not significant when corrected for neighbourhood socioeconomic disadvantage. The greatest socioeconomic disadvantage was associated with housing concerns (p = 0.002), food (p = 0.026), and financial insecurity (p = 0.02). INTERPRETATION: Unmet social needs are experienced by most families of children with CP. This study highlights the importance of systematic pathways to identify and address unmet social needs.

Disparities in Receipt of Guideline-adherent Blood Pressure Screening: An Observational Examination of Electronic Health Record Data from a Massachusetts Healthcare System.

OBJECTIVE: To describe the prevalence of blood pressure (BP) screening according to the 2017 American Academy of Pediatrics (AAP) guidelines and differences according to social vulnerability indicators. STUDY DESIGN: We extracted electronic health record data from January 1, 2018, through December 31, 2018, from the largest healthcare system in Central Massachusetts. Outpatient visits for children aged 3-17 years without a prior hypertension diagnosis were included. Adherence was defined by the American Academy of Pediatrics guideline (≥1 BP screening for children with a body mass index [BMI] of <95th percentile) and at every encounter for children with a BMI of ≥95th percentile). Independent variables included social vulnerability indicators at the patient level (insurance type, language, Child Opportunity Index, race/ethnicity) and clinic level (location, Medicaid population). Covariates included child's age, sex, and BMI status, and clinic specialty, patient panel size, and number of healthcare providers. We used direct estimation to calculate prevalence estimates and multivariable mixed effects logistic regression to determine the odds of receiving guideline-adherent BP screening. RESULTS: Our sample comprised 19 695 children (median age, 11 years; 48% female) from 7 pediatric and 20 family medicine clinics. The prevalence of guideline-adherent BP screening was 89%. In our adjusted model, children with a BMI of ≥95th percentile, with public insurance, and who were patients at clinics with larger Medicaid populations and larger patient panels had a lower odds of receiving guideline-adherent BP screening. CONCLUSIONS: Despite overall high adherence to BP screening guidelines, patient- and clinic-level disparities were identified.

Bidirectional processes linking social determinants of health and pediatric sickle cell anemia management: A qualitative study.

BACKGROUND: Children with sickle cell anemia (SCA) have substantial medical needs and more unmet basic needs than children with other medical conditions. Despite a recent focus on social determinants of health (SDoH), there remains an incomplete understanding of the processes linking SDoH and disease management, particularly for youth with SCA. This study elucidated these processes and identified ways to mitigate deleterious effects of adverse SDoH on SCA management. METHODS: Parents/primary caregivers (N = 27) of children with SCA (≤12 years old) participated in semi-structured interviews regarding SCA management and SDoH and completed quantitative measures of basic needs. Qualitative data were systematically coded and analyzed using applied thematic analysis. Quantitative data were presented descriptively. RESULTS: Three qualitative themes were identified. First, SCA management is bidirectionally linked with the social environment, whereby challenges of SCA management can hinder basic needs from being met, and unmet basic needs and financial hardship hinder SCA management. Second, due to limited resources, parents/caregivers are faced with difficult choices between prioritizing basic needs versus SCA management. Third, addressing material, emotional, and informational needs may improve SCA management. Quantitatively, 73% of families endorsed ≥1 basic need, including food insecurity (42%), housing instability (62%), and/or energy insecurity 19% (vs. 20%). CONCLUSION: Despite documented associations, there remains a poor understanding of the processes linking SDoH and health. Findings underscore how day-to-day conditions undermine the management of SCA treatments, symptoms, and complications, limiting treatment effectiveness. Understanding these processes may inform family-centered, health equity interventions and policies to improve living conditions, disease management, and health outcomes.

Role of ethnicity/language in documented rates of pediatric asthma prescription refills.

OBJECTIVE: Medication maintenance is critical in the management of asthma. We investigated the differences in electronic health record (EHR) documentation of medication refills for Spanish- and English-speaking Latino children and non-Hispanic white children by examining rates of albuterol rescue inhaler refills from 2005 to 2017, and and inhaled corticosteroid refills from 2015 to 2017 in a multi-state network of community health centers (CHCs). METHODS: We used data from the ADVANCE network of CHCs. Our sample consisted of children aged 3-17, with a diagnosis of asthma and either albuterol or inhaled corticosteroid prescriptions (n = 39,162; n = 4,738 children, respectively). Negative binomial regression was used to calculate rates of refills per prescription adjusted for relevant patient-level covariates. Analyses stratified by asthma severity were also conducted. RESULTS: English-speaking Latino children had lower rates of albuterol refills compared with non-Hispanic white children (rate ratio [RR] = 0.88, 95% confidence interval [CI]: 0.80-0.98), a trend that persisted among children with moderate/severe persistent asthma severity (RR = 0.85, 95% CI: 0.76-0.95). Spanish-speaking Latino and non-Hispanic white children had similar albuterol refills. Inhaled corticosteroid refill rates were comparable between all groups. CONCLUSIONS: In a multi-state network, these findings suggest that CHCs deliver equitable asthma care related to prescription refills between their Latino and white patients, but there is still opportunity for providers to ensure that their English-speaking Latino patients have access to necessary emergency asthma medication.

A cross-sectional study of relationships between social risks and prevalence and severity of pediatric chronic conditions.

BACKGROUND: To examine the differential relationships between seven social risk factors (individually and cumulatively) with the prevalence and severity of asthma, attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), and overweight/obesity in children. METHODS: Using the 2017-2018 National Survey of Children's Health, we examined associations between social risk factors (caregiver education, caregiver underemployment, discrimination, food insecurity, insurance coverage, neighborhood support, and neighborhood safety) and the prevalence and severity of asthma, ADHD, ASD, and overweight/obesity. We used multivariable logistic regression to assess the relationship between individual and cumulative risk factors with each pediatric chronic condition, controlling for child sex and age. RESULTS: Although each social risk factor was significantly associated with increased prevalence and/or severity of at least one of the pediatric chronic conditions we investigated, food insecurity was significantly associated with higher disease prevalence and severity for all four conditions. Caregiver underemployment, low social support, and discrimination were significantly associated with higher disease prevalence across all conditions. For each additional social risk factor a child was exposed to, their odds of having each condition increased: overweight/obesity (aOR: 1.2, 95% CI: [1.2, 1.3]), asthma (aOR: 1.3, 95% CI: [1.2, 1.3], ADHD (aOR: 1.2, 95% CI: [1.2, 1.3]), and ASD (aOR: 1.4, 95% CI: [1.3, 1.5]). CONCLUSIONS: This study elucidates differential relationships between several social risk factors and the prevalence and severity of common pediatric chronic conditions. While more research is needed, our results suggest that social risks, particularly food insecurity, are potential factors in the development of pediatric chronic conditions.

Clinical and public policy interventions to address food insecurity among children.

PURPOSE OF REVIEW: This article describes the impacts of food insecurity (FI) on child health, outlines clinical and public policy interventions to mitigate FI in children, and defines new paradigms in population health to ameliorate the harmful effects of FI in children. RECENT FINDINGS: Rates of FI among children have dramatically increased with the onset of the COVID-19 pandemic, with particular adverse impact on low-income children. Population health innovations in screening, referral, and social service integration offer new opportunities to address FI. SUMMARY: Despite advances in clinical practice and public policy, FI remains a persistent issue for many US children. Clinicians and policymakers have opportunities to leverage clinical and community-based integration to improve service delivery opportunities to ameliorate childhood hunger and racial and socioeconomic inequity in the United States.

Latino-white disparities in ICD-coded asthma diagnosis among US children.

INTRODUCTION: It is uncertain if disparities in asthma diagnosis between Latino and non-Hispanic white children stem from differences in diagnosis over time among children presenting with similar clinical scenarios suggestive of asthma. METHODS: We evaluated the odds of International Classification of Disease (ICD)-coded asthma diagnosis in Latino (English and Spanish preferring) and non-Hispanic white children, overall (N = 524,456) and among those presenting with possible asthma indicators (N = 85,516) over a 13-year period, using electronic health record data from a multi-state network of community health centers. RESULTS: Among those with possible asthma indicators, Spanish-preferring Latinos had lower adjusted odds of ICD-coded asthma diagnosis compared to non-Hispanic whites (OR = 0.87, 95%CI = 0.77-0.99); English-preferring Latinos did not differ from non-Hispanic whites. Differences in ICD-coded diagnosis between ethnicity/language groups varied by presenting symptom. CONCLUSIONS: Spanish-preferring Latino children may be less-likely to have ICD-coded asthma documented in the EHR when presenting with certain clinical indicators suggestive of asthma. Clinicians should be cognizant of the need for the follow-up of these indicators in Spanish-preferring Latino children.

Supplemental Nutrition Assistance Program participation and health care expenditures in children.

BACKGROUND: The Supplemental Nutrition Assistance Program (SNAP) has well-established positive impacts on child health outcomes, including increased birth weight and decreased likelihood of underweight status. Studies in adult populations suggest that SNAP is associated with lower health care costs, although less is known in children. METHODS: Retrospective analysis of U.S. children (age <18 years) living in low-income households (< 200% of the federal poverty level) in the 2013-2017 Medical Expenditure Panel Survey. We used multivariable regression, adjusting for sociodemographic and clinical covariates, to model the effect of continuous SNAP enrollment on health expenditures as compared to non-enrollees at 12 and 24 months. RESULTS: The sample included 5,626 children, of whom 49.2% consistently received SNAP for the entire two-year survey period. Compared with SNAP non-recipients, SNAP-recipient households more often had incomes below 100% FPL (78.3% vs 37.9%), and children in SNAP-recipient households were more often publicly insured (94.9% vs 64.5%). Unadjusted expenditures were lower for children in SNAP-recipient households at 12 ($1222 vs $1603) and 24 months ($2447 vs $3009). However, when adjusting for sociodemographic and clinical differences, no statistically significant differences in health care expenditures, including emergency department, inpatient, outpatient, and prescription costs, were identified. CONCLUSION: SNAP participant children experience heightened social hardships across multiple domains. There were no differences in short term health care costs based on SNAP enrollment when accounting for differences in sociodemographic and clinical factors. Despite demonstrated child health benefits, we found that sustained enrollment in SNAP over a two-year period did not generate significant short- term health care cost reductions. Our findings suggest that although SNAP is intended to act as a benefit towards the health and well-being of its recipients, unlike among adults, it may not reduce health care costs among children.

Trends in food insecurity rates at an academic primary care clinic: a retrospective cohort study.

BACKGROUND: Healthcare organizations are increasingly screening and addressing food insecurity (FI); yet, limited data exists from clinic-based settings on how FI rates change over time. The objective of this study was to evaluate household FI trends over a two-year period at a clinic that implemented a FI screening and referral program. METHODS: In this retrospective cohort study, data were extracted for all visits at one academic primary care clinic for all children aged 0-18 years whose parents/guardians had been screened for FI at least once between February 1, 2018 to February 28, 2019 (Year 1) and screened at least once between March 1, 2019 to February 28, 2020 (Year 2). Bivariate analyses tested for differences in FI and demographics using chi-square tests. Mixed effects logistic regression was used to assess change in FI between Years 1 and 2 with random intercept for participants controlling for covariates. The interaction between year and all covariates was evaluated to determine differences in FI change by demographics. RESULTS: Of 6182 patients seen in Year 1, 3691 (59.7%) were seen at least once in Year 2 and included in this study. In Year 1, 19.6% of participants reported household FI, compared to 14.1% in Year 2. Of those with FI in Year 1, 40% had FI in Year 2. Of those with food security in Year 1, 92.3% continued with food security in Year 2. Compared to Hispanic/Latinx participants, African American/Black (OR: 3.53, 95% CI: 2.33, 5.34; p < 0.001) and White (OR: 1.88, 95% CI: 1.06, 3.36; p = 0.03) participants had higher odds of reporting FI. African American/Black participants had the largest decrease in FI between Years 1 and 2 (- 7.9, 95% CI: - 11.7, - 4.1%; p < 0.0001). CONCLUSIONS: Because FI is transitional, particularly for racial/ethnic minorities, screening repeatedly can identify families situationally experiencing FI.

Addressing unmet basic needs for children with sickle cell disease in the United States: clinic and staff perspectives.

BACKGROUND: The purpose of this study was to assess pediatric hematology clinic staff's perspectives regarding barriers and facilitators in addressing unmet basic needs for children with sickle cell disease (SCD). METHODOLOGY: Six focus groups were held at four urban pediatric hematology clinics in the Northeastern region of the United States from November to December 2019. Discussion questions were developed to align with the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) implementation science framework, focusing on the domains of context and recipient and how clinics address adverse social determinants of health (SDoH) in their patient populations. A summative content analytical approach was taken to identify major themes in the data. RESULTS: We discerned the following themes: (1) families of children with SCD experience numerous unmet basic needs; (2) clinic staff believed they had a role to play in addressing these unmet basic needs; (3) staff felt their ability to address families' unmet basic needs depended upon caregivers' capacity to act on staff's recommendations; and (4) clinic staff's ability to address these needs was limited by organizational and systemic factors beyond their control. CONCLUSIONS: These findings have important implications for how best to address adverse SDoH for this vulnerable pediatric population so that urban-based pediatric hematology clinics can more equitably support families.

Addressing Social Determinants of Health Within Healthcare Delivery Systems: a Framework to Ground and Inform Health Outcomes.

Social determinants of health (SDoH) are the conditions in which people live and work that shape access to essential social and economic resources. Calls for healthcare systems to intervene on unmet social needs have stimulated several large-scale initiatives across the country. Yet, such activities are underway in the absence of a unifying conceptual framework outlining the potential mechanisms by which healthcare-based unmet social need interventions can improve health outcomes. Drawing on theoretical foundations and empirical evidence about the relationship between unmet social needs and health, the authors developed the OASIS (Outcomes from Addressing SDoH in Systems) conceptual framework to map the known and hypothesized pathways by which unmet social need screening and referral interventions may impact outcomes. The OASIS framework may help guide policy makers, healthcare system leaders, clinicians, and researchers to utilize a more unified approach in their efforts to implement and evaluate unmet social need interventions and thus foster the development of an evidence base to inform healthcare systems to more effectively mitigate the consequences of unmet social needs. Adopting an overarching conceptual framework for addressing unmet social needs by healthcare systems holds promise for better achieving health equity and promoting health at the individual and population levels.

Implementing an EHR-based Screening and Referral System to Address Social Determinants of Health in Primary Care.

BACKGROUND: Social determinants affect health, yet there are few systematic clinical strategies in primary care that leverage electronic health record (EHR) automation to facilitate screening for social needs and resource referrals. An EHR-based social determinants of health (SDOH) screening and referral model, adapted from the WE CARE model for pediatrics, was implemented in urban adult primary care. OBJECTIVES: This study aimed to: (1) understand the burden of SDOH among patients at Boston Medical Center; and (2) evaluate the feasibility of implementing a systematic clinical strategy to screen new primary care patients for SDOH, use EHR technology to add these needs to the patient's chart through autogenerated ICD-10 codes, and print patient language-congruent referrals to available resources upon patient request. RESEARCH DESIGN: This observational study assessed the number of patients who were screened to be positive and requested resources for social needs. In addition, we evaluated the feasibility of implementing our SDOH strategy by determining the proportion of: eligible patients screened, providers signing orders for positive patient screenings, and provider orders for resource referral guides among patients requesting resource connections. RESULTS: In total, 1696 of 2420 (70%) eligible patients were screened. Employment (12%), food insecurity (11%), and problems affording medications (11%) were the most prevalent concerns among respondents. In total, 367 of 445 (82%) patients with ≥1 identified needs (excluding education) had the appropriate ICD-10 codes added to their visit diagnoses. In total, 325 of 376 (86%) patients who requested resources received a relevant resource referral guide. CONCLUSIONS: Implementing a systematic clinical strategy in primary care using EHR workflows was successful in identifying and providing resource information to patients with SDOH needs.

Perspectives from the Society for Pediatric Research: interventions targeting social needs in pediatric clinical care.

The social determinants of health (SDoH) are defined by the World Health Organization as the "conditions in which people are born, grow, live, work, and age." Within pediatrics, studies have highlighted links between these underlying social, economic, and environmental conditions, and a range of health outcomes related to both acute and chronic disease. Additionally, within the adult literature, multiple studies have shown significant links between social problems experienced during childhood and "adult diseases" such as diabetes mellitus and hypertension. A variety of potential mechanisms for such links have been explored including differential access to care, exposure to carcinogens and pathogens, health-affecting behaviors, and physiologic responses to allostatic load (i.e., toxic stress). This robust literature supports the importance of the SDoH and the development and evaluation of social needs interventions. These interventions are also driven by evolving economic realities, most importantly, the shift from fee-for-service to value-based payment models. This article reviews existing evidence regarding pediatric-focused clinical interventions that address the SDoH, those that target basic needs such as food insecurity, housing insecurity, and diminished access to care. The paper summarizes common challenges encountered in the evaluation of such interventions. Finally, the paper concludes by introducing key opportunities for future inquiry.

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.

Evaluating the Accountable Health Communities Demonstration Project.

Despite substantial evidence documenting the social patterning of disease, relatively little information is available on how the health care system can best intervene on social determinants to impact individual and population health. Announced in January 2016, the Centers for Medicare and Medicaid Innovation's (CMMI) Accountable Health Communities (AHC) initiative provides an important opportunity to improve the evidence base around integrated social and medical care delivery. To maximize learning from this large-scale demonstration, comprehensive evaluation efforts should focus on effectiveness and implementation research by supporting local, regional, and national studies across a range of outcomes. Findings from this demonstration could transform how, when, and which patients' health-related social needs are addressed within the health care delivery system. Such findings would strongly complement other initiatives to address social factors outside of health care.

Influence of Maternal Depression on WIC Participation in Low-Income Families.

OBJECTIVES: To date, little is known regarding the impact of maternal depression on participation in public benefit programs. This study examines whether maternal depression is predictive of lower WIC participation in early childhood. METHODS: This was a secondary data analysis using weighted data from the Early Childhood Longitudinal Study, Birth Cohort. Maternal data collected when children were 9 and 24 months of age were used. 9 months was considered baseline, and 24 months was considered follow-up. The study cohort consisted of 3841 low income mothers, defined as <185 % federal poverty level, who reported WIC participation at baseline. Baseline maternal depressive symptoms were measured by a 12-item abbreviated version of the Center for Epidemiologic Studies Depression Scale. WIC participation was assessed by maternal self-report. RESULTS: At baseline, 24.5 % of mothers were depressed (raw score >9). The majority of mothers were white, unemployed, and born in the US. Most received Medicaid (74 %) and almost half received SNAP (47 %). At follow-up, 80.1 % of mothers reported WIC participation. In multivariable analysis, maternal depression at baseline was significantly associated with decreased WIC participation at follow-up (aOR 0.74; 95 % CI 0.55-0.99). CONCLUSIONS: Our results suggest that maternal depression is an independent risk factor for decreased WIC participation in low-income families with young children. Primary and secondary prevention strategies aimed at maternal depression may positively impact low-income families' participation in public benefit programs. Further longitudinal and interventional studies are needed in order to inform clinical practice and public health policy.

Addressing Psychosocial Adversity Within the Patient-Centered Medical Home: Expert-Created Measurable Standards.

The Patient-Centered Medical Home (PCMH) may be improved by embedding identification and response for patients' experiences with psychosocial adversity, but how this might optimally occur in practice has not been well-specified. We sought input from an expert panel to define feasible elements that could adapt the PCMH to adequately respond to patients' experiences with psychosocial adversity. From December 2012 through September 2013, we used a Delphi process to systematically obtain expert opinions and reach consensus. We invited 37 experts to participate in three successive and iterative rounds of questionnaires, with each round based on aggregated, de-identified data from the prior round. We first asked experts to generate elements to adapt the PCMH, using the National Committee for Quality Assurance (NCQA's) established six PCMH standards as the foundation. We then asked the experts to rate these elements on a 5-point Likert scale, and finally specify what they considered the most and least valuable elements. Eighteen of the 37 (49 %) invited experts responded to the first survey, and constituted our sample. Experts identified 35 elements that fell under the six NCQA standards. The top rated elements included using a screening tool to identify adversity; training providers to address psychosocial adversity; having a team member with mental health expertise; providing culturally-competent care; and having written patient information related to adversity and coping. This study derived key elements that may enhance the PCMH's ability to improve patient outcomes by purposefully identifying and responding to their psychosocial adversity.