Most children will experience some type of trauma during childhood, and many children suffer from significant adversities. Research in genetics, neuroscience, and epidemiology all provide evidence that these experiences have effects at the molecular, cellular, and organ level, with consequences on physical, emotional, developmental, and behavioral health across the life span. Trauma-informed care translates that science to inform and improve pediatric care and outcomes. To practically address trauma and promote resilience, pediatric clinicians need tools to assess childhood trauma and adversity experiences as well as practical guidance, resources, and interventions. In this clinical report, we summarize current, practical advice for rendering trauma-informed care across varied medical settings.
Preventing Childhood Toxic Stress: Partnering With Families and Communities to Promote Relational Health
By focusing on the safe, stable, and nurturing relationships (SSNRs) that buffer adversity and build resilience, pediatric care is on the cusp of a paradigm shift that could reprioritize clinical activities, rewrite research agendas, and realign our collective advocacy. Driving this transformation are advances in developmental sciences as they inform a deeper understanding of how early life experiences, both nurturing and adverse, are biologically embedded and influence outcomes in health, education, and economic stability across the life span. This revised policy statement on childhood toxic stress acknowledges a spectrum of potential adversities and reaffirms the benefits of an ecobiodevelopmental model for understanding the childhood origins of adult-manifested disease and wellness. It also endorses a paradigm shift toward relational health because SSNRs not only buffer childhood adversity when it occurs but also promote the capacities needed to be resilient in the future. To translate this relational health framework into clinical practice, generative research, and public policy, the entire pediatric community needs to adopt a public health approach that builds relational health by partnering with families and communities. This public health approach to relational health needs to be integrated both vertically (by including primary, secondary, and tertiary preventions) and horizontally (by including public service sectors beyond health care). The American Academy of Pediatrics asserts that SSNRs are biological necessities for all children because they mitigate childhood toxic stress responses and proactively build resilience by fostering the adaptive skills needed to cope with future adversity in a healthy manner.
There are multiple conditions that can make children prone to having a sudden cardiac arrest (SCA) or sudden cardiac death (SCD). Efforts have been made by multiple organizations to screen children for cardiac conditions, but the emphasis has been on screening before athletic competition. This article is an update of the previous American Academy of Pediatrics policy statement of 2012 that addresses prevention of SCA and SCD. This update includes a comprehensive review of conditions that should prompt more attention and cardiology evaluation. The role of the primary care provider is of paramount importance in the evaluation of children, particularly as they enter middle school or junior high. There is discussion about whether screening should find any cardiac condition or just those that are associated with SCA and SCD. This update reviews the 4 main screening questions that are recommended, not just for athletes, but for all children. There is also discussion about how to handle post-SCA and SCD situations as well as discussion about genetic testing. It is the goal of this policy statement update to provide the primary care provider more assistance in how to screen for life-threatening conditions, regardless of athletic status.
Of the nearly 3.8 million infants born in the United States in 2018, 8.3% had low birth weight (ie, weight <2500 g) and 10% were born preterm (ie, gestational age of <37 weeks). Ten to fifteen percent of infants (approximately 500 000 annually), including low birth weight and preterm infants and others with congenital anomalies, perinatally acquired infections, and other diseases, require admission to a NICU. Every year, approximately 3600 infants in the United States die of sudden unexpected infant death (SUID), including sudden infant death syndrome (SIDS), unknown and undetermined causes, and accidental suffocation and strangulation in an unsafe sleep environment. Preterm and low birth weight infants are 2 to 3 times more likely than healthy term infants to die suddenly and unexpectedly. Thus, it is important that health care professionals prepare families to maintain their infant in a safe home sleep environment as per recommendations of the American Academy of Pediatrics. Medical needs of the NICU infant often require practices such as nonsupine positioning, which should be transitioned as soon as medically possible and well before hospital discharge to sleep practices that are safe and appropriate for the home environment. This clinical report outlines the establishment of appropriate NICU protocols for the timely transition of these infants to a safe home sleep environment. The rationale for these recommendations is discussed in the accompanying technical report "Transition to a Safe Home Sleep Environment for the NICU Patient," included in this issue of Pediatrics.
Of the nearly 3.8 million infants born in the United States in 2018, 8.3% had low birth weight (<2500 g [5.5 lb]) and 10% were born preterm (gestational age of <37 completed weeks). Many of these infants and others with congenital anomalies, perinatally acquired infections, and other disease require admission to a NICU. In the past decade, admission rates to NICUs have been increasing; it is estimated that between 10% and 15% of infants will spend time in a NICU, representing approximately 500 000 neonates annually. Approximately 3600 infants die annually in the United States from sleep-related deaths, including sudden infant death syndrome International Classification of Diseases, 10th Revision (R95), ill-defined deaths (R99), and accidental suffocation and strangulation in bed (W75). Preterm and low birth weight infants are particularly vulnerable, with an incidence of death 2 to 3 times greater than healthy term infants. Thus, it is important for health care professionals to prepare families to maintain their infant in a safe sleep environment, as per the recommendations of the American Academy of Pediatrics. However, infants in the NICU setting commonly require care that is inconsistent with infant sleep safety recommendations. The conflicting needs of the NICU infant with the necessity to provide a safe sleep environment before hospital discharge can create confusion for providers and distress for families. This technical report is intended to assist in the establishment of appropriate NICU protocols to achieve a consistent approach to transitioning NICU infants to a safe sleep environment as soon as medically possible, well before hospital discharge.
Integrating Web Services/Applications to Improve Pediatric Functionalities in Electronic Health Records
The past decade has seen a substantial increase in the use of electronic health records (EHRs) by health care providers caring for children. However, gaps in pediatric-specific functionalities continue to exist in some EHR systems, including population-specific growth curves, immunization clinical decision support, weight-based medication dosing with rounding, calculation of pediatric hypertension percentiles, age-specific developmental assessment, newborn bilirubin nomograms, anticipatory guidance reminders, and other functionalities described elsewhere. Implementing pediatric functionalities into EHRs is critical to the provision of safe pediatric care. As an alternative to direct implementation in EHRs, EHR vendor agnostic Web applications, Web services, and application programming interfaces offer an opportunity to provide pediatric functionalities and eliminate the need for each vendor to develop these functionalities. Successful implementation of Web services and related technologies requires responsible attention from both EHR vendors and developers of Web services, Web applications, and application programming interfaces to the use of data terminology standards, adherence to privacy and security requirements, rigorous testing, change management processes, and robust system support and maintenance. Education of health care providers about opportunities to improve pediatric functionalities in EHRs by using these services can facilitate discussions in EHR user groups in which vendors can be lobbied to implement them. This policy statement emphasizes the need to address pediatric-specific functionalities in EHRs by providing insight and recommendations into the development, maintenance, integration, and support of these novel solutions.
Electronic health record (EHR) systems do not uniformly implement pediatric-supportive functionalities. One method of adding these capabilities across EHR platforms is to integrate Web services and Web applications that may perform decision support and store data in the cloud when the EHR platform is able to integrate Web services. Specific examples of these services are described, such as immunization clinical decision support services, consumer health resources, and bilirubin nomograms. Health care providers, EHR vendors, and developers share responsibilities in the appropriate development, integration, and use of Web services and Web applications as they relate to best practices in the areas of data security and confidentiality, technical availability, audit trails, terminology and messaging standards, compliance with the Health Insurance Portability and Accountability Act, testing, usability, and other considerations. It is desirable for health care providers to have knowledge of Web services and Web applications that can improve pediatric capabilities in their own EHRs because this will naturally inform discussions concerning EHR features and facilitate implementation and subsequent use of these capabilities by clinicians caring for children.
Laboratory testing is performed frequently in the NICU. Unnecessary tests can result in increased costs, blood loss, and pain, which can increase the risk of long-term growth and neurodevelopmental impairment. Our aim was to decrease routine screening laboratory testing in all infants admitted to our NICU by 20% over a 24-month period.METHODS
We designed and implemented a multifaceted quality improvement project using the Institute for Healthcare Improvement’s Model for Improvement. Baseline data were reviewed and analyzed to prioritize order of interventions. The primary outcome measure was number of laboratory tests performed per 1000 patient days. Secondary outcome measures included number of blood glucose and serum bilirubin tests per 1000 patient days, blood volume removed per 1000 patient days, and cost. Extreme laboratory values were tracked and reviewed as balancing measures. Statistical process control charts were used to track measures over time.RESULTS
Over a 24-month period, we achieved a 26.8% decrease in laboratory tests performed per 1000 patient days (51 000 fewer tests). We observed significant decreases in all secondary measures, including a decrease of almost 8 L of blood drawn and a savings of $258 000. No extreme laboratory values were deemed attributable to the interventions. Improvement was sustained for an additional 7 months.CONCLUSIONS
Targeted interventions, including guideline development, dashboard creation and distribution, electronic medical record optimization, and expansion of noninvasive and point-of-care testing resulted in a significant and sustained reduction in laboratory testing without notable adverse effects.
Pediatric behavioral health admissions to children’s hospitals for disposition planning are steadily increasing. These children may exhibit violent behaviors, which can escalate to application of physical limb restraints for safety. Using quality improvement methodology, we sought to decrease physical restraint use on children admitted to our children’s hospital for behavioral health conditions from a baseline mean of 2.6% of behavioral health patient days to <1%.METHODS
We included all children ≥3 years of age admitted to our hospital medicine service with a primary behavioral health diagnosis from July 1, 2016, to February 1, 2020. A multidisciplinary team, formed in July 2018, tested interventions based on key drivers targeted toward our aim. The primary outcome measure was the percent of behavioral health patient days on which physical restraints were ordered. The balancing measure was the percent of patient days with a staff injury event. Statistical process control charts were used to view and analyze data.RESULTS
Our cohort included 3962 consecutive behavioral health patient encounters, encompassing a total of 9758 patient days. A 2-year baseline revealed physical restraint orders placed on 2.6% of behavioral health patient days, which was decreased to 0.9% after interventions and has been sustained over 19 months without any change in staff injuries.CONCLUSIONS
Team-based quality improvement methodology was associated with a sustained reduction in physical restraint use on children admitted for behavioral health conditions to our children’s hospital. These results indicate that physical restraint use can be safely reduced in children’s hospitals.
Caregivers of children with medical complexity (CMC) face many stressors related to their child’s medical condition(s). Financial stress and its impact on housing has been reported to be a challenge among this population. However, unique housing challenges specific to CMC, including disability accommodations in the home and housing space and layout, have yet to be examined in the literature.METHODS
We conducted 20 individual semistructured interviews with parents of CMC. Interviews were recorded, coded, and analyzed by using thematic analysis to emphasize, examine, and record patterns of meaning within the data.RESULTS
Eighteen mothers and 2 fathers participated in individual interviews. Two major themes and subthemes (in parentheses) were identified: (1) the impact of health on housing (housing preferences, housing possibilities, and housing outcome as a trade-off) and (2) the impact of housing on health (health of the caregiver and health of the child). Parents had preferences regarding the location and layout of their home specific to their child’s illness and medical needs. In addition, parents indicated their child’s illness affected their income and home ownership status, which in turn shaped their housing possibilities. The location and layout of the family home was often the result of a trade-off between the caregiver’s housing preferences and possibilities.CONCLUSIONS
Housing outcomes among CMC are often the result of a trade-off between housing preferences and possibilities, both of which are influenced by the child’s health status. Policy changes targeting housing accessibility and affordability are vital to support the health of CMC.
Congenital anomalies affect 3% to 5% of births and remain the leading cause of infant death in the United States. As whole exome and genome sequencing are increasingly used to diagnose underlying genetic disease, the patient’s clinical presentation remains the most important context for interpreting sequencing results, including frequently reported variants of uncertain significance (VUS). Classification of a variant as VUS acknowledges limits on evidence to establish whether a variant can be classified as pathogenic or benign according to the American College of Medical Genetics guidelines. Importantly, the VUS designation reflects limits on the breadth of evidence linking the genetic variant to a disease. However, available evidence, although limited, may be surprisingly relevant in an individual patient’s case. Accordingly, a VUS result should be approached neither as nondiagnostic genetic result nor as automatically "uncertain" in its potential to guide clinical decision-making. In this article, we discuss a case of an infant born at 29 weeks 4 days without a corpus callosum, whose whole genome sequencing yielded compound heterozygous variants both classified as VUS in ROBO1, a gene encoding for a receptor involved in a canonical signaling mechanism that guides axons across midline. Approaching the VUS result as potentially pathogenic, we found the infant ultimately had pituitary dysfunction and renal anomalies consistent with other reported ROBO1 variants and basic science literature. Accordingly, we highlight resources for variant interpretation available to clinicians to evaluate VUS results, particularly as they inform the diagnosis of individually rare but collectively common rare diseases.
Studies supporta recent decline in public benefit enrollment among immigrant families. We aimed to describe health and resource use, barriers to use, and immigration-related fear in families with undocumented parents compared with families without undocumented parents. We also aimed to assess associations with discontinuation of public benefits and fear of deportation.METHODS
We assessed immigration concerns and enrollment in Medicaid, Supplemental Nutrition Assistance Program (SNAP), and Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) with an 89-item anonymous, cross-sectional survey of English- and Spanish-speaking caregivers of hospitalized children. Multivariable logistic regression was used to assess associations with discontinuation of public benefits and fear of deportation.RESULTS
Of 527 families approached, 399 enrolled (105 with 1 or more undocumented parent, 275 with no undocumented parent, and 19 with undisclosed immigration status). Compared with families without undocumented parents, families with undocumented parents had higher levels of poverty and food insecurity. Controlling for perceived eligibility, public benefit use was similar across groups. Of families with undocumented parents, 29% reported public benefit discontinuation because of immigration concerns, and 71% reported fear of deportation. Having an undocumented parent was associated with public benefit disenrollment (odds ratio: 46.7; 95% confidence interval: 5.9–370.4) and fear of deportation (odds ratio: 24.3; 95% confidence interval: 9.6–61.9).CONCLUSIONS
Although families with undocumented parents had higher levels of poverty and food insecurity compared with families without undocumented parents, public benefit use was similar between groups. Immigration-related fear may be a barrier to public benefit use in this population.
Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care programs over the past decade, little is known about the current operational features of PPC programs across the country.METHODS
The National Palliative Care Registry collects annualized data on palliative care programs’ structures, processes, and staffing. Using data from the 2018 registry survey, we report on the operational features of inpatient PPC programs across the United States.RESULTS
Fifty-four inpatient PPC programs submitted data about their operations. Programs reported a median of 3.8 full-time equivalent staff per 10 000 hospital admissions (range 0.7–12.1) across the core interdisciplinary team, yet few (37%) met the minimum standards of practice for staffing. Programs provided more annual consults if they were longer-standing, had more interdisciplinary full-time equivalent staff, offered 24/7 availability for patients and families, or were at larger hospitals. The majority of programs reported concern for burnout (63%) and an inability to meet clinical demand with available staffing (60%).CONCLUSIONS
There is considerable variability in PPC program operations and structure in hospitals. This study affirms the need for updated program standards and guidelines, as well as research that describes how different care delivery models impact outcomes for patients, families, staff, and health care systems. Future studies that further define the clinical demand, workload, and sustainability challenges of PPC programs are necessary to foster the provision of high-quality PPC and maintain a vital clinical workforce.
Maintenance intravenous fluids (IVFs) are commonly used in the hospital setting. Hypotonic IVFs are commonly used in pediatrics despite concerns about high incidence of hyponatremia. We aimed to increase isotonic maintenance IVF use in children admitted from the emergency department (ED) from a baseline of 20% in 2018 to >80% by December 2019.METHODS
We included patients aged 28 days to 18 years receiving maintenance IVFs (rate >10 mL/hour) at the time of admission. Patients with active chronic medical problems were excluded. Interventions included institutional discussions on isotonic IVF based on literature review, education on isotonic IVF use per the American Academy of Pediatrics guideline (isotonic IVF use with appropriate potassium chloride and dextrose), electronic medical record changes to encourage isotonic IVF use, and group practice review with individual physician audit and feedback. Balancing measures were the frequency of serum electrolyte checks within 24 hours of ED admission and occurrence of hypernatremia. Data were analyzed by using statistical process control charts.RESULTS
Isotonic maintenance IVF use improved, with special cause observed twice; the 80% goal was met and sustained. No difference was noted in serum electrolyte checks within 24 hours of admission (P > .05). There was no increase in occurrence of hypernatremia among patients who received isotonic IVF compared with those who received hypotonic IVF (P > .05).CONCLUSIONS
The application of improvement methods resulted in improved isotonic IVF use in ED patients admitted to the inpatient setting. Institutional readiness for change at the time of the American Academy of Pediatrics guideline release and hardwiring of preferred fluids via electronic medical record changes were critical to success.
A diverse pediatric workforce reflecting the racial/ethnic representation of the US population is an important factor in eliminating health inequities. Studies reveal minimal improvements over time in the proportions of underrepresented in medicine (URiM) physicians; however, studies assessing trends in pediatric URiM trainee representation are limited. Our objective was to evaluate longitudinal trends in racial/ethnic representation among a cross-section of US pediatric trainees and to compare it to the US population.METHODS
Repeated cross-sectional study of graduate medical education census data on self-reported race/ethnicity of pediatric residents and subspecialty fellows from 2007 to 2019. To evaluate trends in URiM proportions over time, the Cochran-Armitage test was performed. Data on self-reported race/ethnicity of trainees were compared with the general population data over time by using US Census Bureau data.RESULTS
Trends in URiM proportions were unchanged in residents (16% in 2007 to 16.5% in 2019; P = .98) and, overall, decreased for fellows (14.2% in 2007 to 13.5% in 2019; P = .002). URiM fellow trends significantly decreased over time in neonatal-perinatal medicine (P < .001), infectious diseases (P < .001), and critical care (P = .006) but significantly increased in endocrinology (P = .002) and pulmonology (P = .009). Over time, the percentage of URiM pediatric trainee representation was considerably lower compared to the US population.CONCLUSIONS
The continued underrepresentation of URiM pediatric trainees may perpetuate persistent health inequities for minority pediatric populations. There is a critical need to recruit and retain pediatric URiM residents and subspecialty fellows.
The progression of gender-expansive behavior to gender dysphoria and to gender-affirming hormonal treatment (GAHT) in children and adolescents is poorly understood.METHODS
A cohort of 958 gender-diverse (GD) children and adolescents who did not have a gender dysphoria–related diagnosis (GDRD) or GAHT at index were identified. Rates of first GDRD and first GAHT prescription were compared across demographic groups.RESULTS
Overall, 29% of participants received a GDRD and 25% were prescribed GAHT during the average follow-up of 3.5 years (maximum 9 years). Compared with youth assigned male sex at birth, those assigned female sex at birth were more likely to receive a diagnosis and initiate GAHT with hazard ratio (95% confidence interval) estimates of 1.3 (1.0–1.7), and 2.5 (1.8–3.3), respectively. A progression to diagnosis was more common among those aged ≥15 years at initial presentation compared with those aged 10 to 14 years and those aged 3 to 9 years (37% vs 28% vs 16%, respectively). By using the youngest group as a reference, the adjusted hazard ratios (95% confidence interval) for a GDRD were 2.0 (1.3–3.0) for age 10 to 14 years and 2.7 (1.8–3.9) for age ≥15 years. Racial and ethnic minorities were less likely to receive a diagnosis or be prescribed GAHT.CONCLUSIONS
This study characterized the progression of GD behavior in children and adolescents. Less than one-third of GD youth receive an eventual GDRD, and approximately one-quarter receive GAHT. Female sex at birth, older age of initial GD presentation to medical care, and non-Hispanic white race and ethnicity increased the likelihood of receiving diagnosis and treatment.