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OBJECTIVE Social risk screening is recommended by the American Academy of Pediatrics, but this practice is underutilized in NICUs. To address this gap in social care, we aimed to increase rates of: (1) systematic social risk screening and (2) connection with community resources, each to ≥50% over a 14-month period. METHODS We conducted a quality improvement initiative from November 2020 to January 2022. We adapted a screening tool and used Plan-Do-Study-Act cycles to integrate screening and referral to resources into clinical workflow. Primary outcome measures included the percentage of (1) families screened and (2) connection with resources. We examined screening by maternal race/ethnicity and primary language. Process measures were (1) time from admission to screening and (2) percentage of referrals provided to families reporting unmet needs and requesting assistance. We used statistical process control to assess change over time and χ2 tests to compare screening by race/ethnicity and language. RESULTS The rates of systematic screening increased from 0% to 49%. Among 103 families screened, 84% had ≥1, and 64% had ≥2 unmet needs, with a total of 221 needs reported. Education, employment, transportation, and food were the most common needs. Screening rates did not vary by race/ethnicity or language. Among families requesting assistance, 98% received referrals. The iterative improvement of a written resource guide and community partnerships led to increased rates of connection with resources from 21% to 52%. CONCLUSION Leveraging existing staff, our social risk screening and referral intervention built the capacity to address the high burden of unmet needs among NICU families.

The clinical utility of rapid genome sequencing (rGS) in critically unwell infants has been consistently demonstrated, and there are calls for rGS to be implemented as a first-line test in the NICU. A diagnosis from rGS can enable rapid initiation of precision treatment, making it potentially lifesaving. However, in many patients rGS leads to the diagnosis of severe and life-limiting conditions, prompting discussion with families about withdrawal of life-sustaining treatment. The complexity of information about rGS, together with the heightened emotions of parents in the NICU, poses significant challenges for informed decision making in this context. We present a case where both parents are unable to provide informed consent, and the treating team must decide whether to proceed with rGS. Our discussion highlights the important differences between genome sequencing and other types of genetic testing, and the crucial role played by pre-test counseling in facilitating informed consent and preparing parents for a range of possible outcomes. We then discuss the consent paradigms at play in NICUs; whereas admission generally comes with an understanding that the treating team will perform interventions thought to be in the best interest of the child, rGS is substantially different because of its long-term implications for patients and family members. Finally, we look at the ethical interplay between parental consent and the interests of the child. We conclude by showing how cases like this are resolved at our tertiary center and how they may be resolved differently in future.

Cerebral palsy (CP) is the most common motor disorder of childhood, with prevalence estimates ranging from 1.5 to 4 in 1000 live births. This clinical report seeks to provide primary care physicians with guidance to detect children with CP; collaborate with specialists in treating the patient; manage associated medical, developmental, and behavioral problems; and provide general medical care to their patients with CP.

OBJECTIVE Congenital heart disease (CHD) is a leading cause of premature death in infants and children. Currently limited data are available regarding lesion specific mortality over time. Our study aimed to describe pediatric mortality trends by CHD lesion in the United States. METHODS We conducted a 19 year analysis (1999 to 2017) of publicly available, deidentified multiple cause of death data compiled and produced by the National Center for Health Statistics. Analysis was stratified by CHD diagnosis and age using 3 age categories (infants, 1 to 4 years, and 5 to 17 years). Temporal trends of CHD mortality and the effect of contributing risk factors were analyzed by using joinpoint regression. RESULTS Mortality was highest for in infants for all CHD lesions, in particular for total anomalous pulmonary venous return. Significant declines in infant CHD mortality occurred for most other lesions. Contributing risk factors, including prematurity, extracardiac birth defects, and genetic conditions, occurred in 19% of infant CHD deaths and demonstrated worse mortality trends in the majority of lesions. Mortality rates remained highest for single ventricle lesions in all ages, with an infant mortality rate plateau in the later half of the study and progressive increasing mortality rates for children 5 to 17 years. CONCLUSIONS CHD mortality is decreasing for most lesions. Because of the heterogenicity of CHD lesions, there is expected variability in mortality trends by lesion and age group. Single ventricle lesions continue to contribute most heavily to premature death because of CHD demonstrated by significant increases in mortality rate for children aged 5 to 17 years.

CONTEXT Despite frequency of gastrostomy placement procedures in children, there remains considerable variability in preoperative work-up and procedural technique of gastrostomy placement and a paucity of literature regarding patient-centric outcomes. OBJECTIVES This review summarizes existing literature and provides consensus-driven guidelines for patients throughout the enteral access decision-making process. DATA SOURCES PubMed, Google Scholar, Medline, and Scopus. STUDY SELECTION Included studies were identified through a combination of the search terms “gastrostomy,” “g-tube,” and “tube feeding” in children. DATA EXTRACTION Relevant data, level of evidence, and risk of bias were extracted from included articles to guide formulation of consensus summaries of the evidence. Meta-analysis was conducted when data afforded a quantitative analysis. EVIDENCE REVIEW Four themes were explored: preoperative nasogastric feeding tube trials, decision-making surrounding enteral access, the role of preoperative imaging, and gastrostomy insertion techniques. Guidelines were generated after evidence review with multidisciplinary stakeholder involvement adhering to GRADE methodology. RESULTS Nearly 900 publications were reviewed, with 58 influencing final recommendations. In total, 17 recommendations are provided, including: (1) tTrial of home nasogastric feeding is safe and should be strongly considered before gastrostomy placement, especially for patients who are likely to learn to eat by mouth; (2) rRoutine contrast studies are not indicated before gastrostomy placement; and (3) lLaparoscopic placement is associated with the best safety profile. LIMITATIONS Recommendations were generated almost exclusively from observational studies and expert opinion, with few studies describing direct comparisons between GT placement and prolonged nasogastric feeding tube trial. CONCLUSIONS Additional patient- and family-centric evidence is needed to understand critical aspects of decision-making surrounding surgically placed enteral access devices for children.

* Abbreviations: aOR — : adjusted odds ratio CI — : confidence interval ED — : emergency department RR — : relative reduction Pain caused by long bone fractures is a common reason for opioid prescribing in the emergency department (ED) setting.1 Approximately 40% of opioid overdose deaths involve a prescription,2 and in response, opioid prescribing has declined in the last decade.3 We previously demonstrated racial and/or ethnic disparities in the ED management of pain among children with long bone fractures.4 We now perform this study to investigate whether racial and/or ethnic differences in provision of outpatient opioid prescriptions for children discharged from the ED with long bone fractures have attenuated over time. We performed a retrospective cross-sectional study of children aged 4 to

This clinical report updates a 2006 report from the American Academy of Pediatrics titled “Sexuality of Children and Adolescents With Developmental Disabilities.” The development of a healthy sexuality best occurs through appropriate education, absence of coercion and violence, and developmental acquisition of skills to navigate feelings, desires, relationships, and social pressures. Pediatric health care providers are important resources for anticipatory guidance and education for all children and youth as they understand their changing bodies, feelings, and behaviors. Yet, youth with disabilities and their families report inadequate education and guidance from pediatricians regarding sexual health development. In the decade since the original clinical report was published, there have been many advancements in the understanding and care of children and youth with disabilities, in part because of an increased prevalence and breadth of autism spectrum disorder as well as an increased longevity of individuals with medically complex and severely disabling conditions. During this same time frame, sexual education in US public schools has diminished, and there is emerging evidence that the attitudes and beliefs of all youth (with and without disability) about sex and sexuality are being formed through media rather than formal education or parent and/or health care provider sources. This report aims to provide the pediatric health care provider with resources and tools for clinical practice to address the sexual development of children and youth with disabilities. The report emphasizes strategies to promote competence in achieving a healthy sexuality regardless of physical, cognitive, or socioemotional limitations.

OBJECTIVES: To examine characteristics and health service use patterns of suicide decedents with a history of child welfare system involvement to inform prevention strategies and reduce suicide in this vulnerable population. METHODS: A retrospective matched case-control design (120 suicide decedents and 1200 matched controls) was implemented. Suicide decedents included youth aged 5 to 21 who died by suicide and had an open case in Ohio’s Statewide Automated Child Welfare Information System between 2010 and 2017. Controls were matched to suicide decedents on sex, race, and ethnicity. Comparisons were analyzed by using conditional logistic regressions to control for matching between the suicide and control groups. RESULTS: Youth in the child welfare system who died by suicide were significantly more likely to experience out-of-home placements and be diagnosed with mental and physical health conditions compared with controls. Suicide decedents were twice as likely to access mental health services in the 1 and 6 months before death, regardless of the health care setting. A significantly higher percentage of suicide decedents used physical health services 6 months before their death or index date. Emergency department visits for both physical and mental health conditions were significantly more likely to occur among suicide decedents. CONCLUSIONS: Suicide decedents involved in the child welfare system were more likely to use both mental and physical health care services in the months before their death or index date. Findings suggest that youth involved in the child welfare system may benefit from suicide prevention strategies in health care settings.

BACKGROUND AND OBJECTIVES To longitudinally examine the nature of moral distress (MoD) experienced by clinicians caring for extremely low gestational age neonates. METHODS Neonatologists, medical trainees, and nurses were surveyed at regular intervals on their experience of MoD and their preferred level of care in relation to 99 neonates born RESULTS Over 18 months, 4593 of 5332 surveys (86% response rate) were collected. MoD was reported on 687 (15%) survey occasions; 91% of neonates elicited MoD during their hospitalization. In their open-ended answers, clinicians invoked 5 main themes to explain their distress: (1) infant-centered reasons (83%), including illness severity, predicted outcomes, and disproportionate care; (2) management plans (26%); (3) family-centered reasons (19%); (4) parental decision-making (16%); and (5) provider-centered reasons (15%). MoD was strongly associated with the perception of “parents wanting too much.” Neonatologists experienced less distress and were more likely than nurses and trainees to align preferred levels of care with family wishes. CONCLUSIONS The majority of preterm infants will generate some MoD; however, it is rarely shared and of a sustained nature. The main constraint reported by clinicians was “parents wanting too much,” leading to disproportionate care.

* Abbreviations: CDC — : Centers for Disease Control and Prevention COVID-19 — : coronavirus disease 2019 NYC — : New York City Although there are several accessible sources providing data on coronavirus disease 2019 (COVID-19) cases, hospitalizations, and deaths in the United States,1,2 little information has been reported on pediatric cases. However, information on COVID-19, categorized by age group, is publicly accessible on nearly all state health department Web sites. In a Centers for Disease Control and Prevention (CDC) report in April, it was reported that only 1.7% of confirmed COVID-19 cases were in children

BACKGROUND: Long-term outcomes in heterotaxy syndrome (HS) are poorly described. Some reports suggest improved survival in the recent era, whereas others do not. We sought to describe long-term outcomes and assess whether outcomes have changed over time. METHODS: Patients with HS born between 1985 and 2014 who had cardiac care (except initial palliation) at our institution were divided into 4 birth eras and survival over time was compared. Independent risk factors for mortality were identified by using Cox proportional hazards regression. In patients who underwent surgery, association between surgical pathway (univentricular versus biventricular repair) and mortality after adjusting for baseline confounders was evaluated. A risk stratification model was created by using classification and regression analysis. RESULTS: Among 264 patients, 118 (44.7%) had asplenia and 146 (55.3%) had polysplenia syndrome. Overall mortality was 40.2% (n = 106), with median follow-up of 10.2 years (longest 31.5 years). In multivariable analysis, pulmonary vein stenosis, coarctation, univentricular circulation, asplenia phenotype, and at least mild atrioventricular valve regurgitation at presentation were associated with mortality, whereas birth era was not. Among patients who underwent surgery, univentricular repair remained associated with mortality after adjustment. In classification and regression analysis, patients with biventricular circulation (especially those with polysplenia) had lower mortality than those with univentricular circulation. CONCLUSIONS: In this large retrospective study of HS, outcomes remain poor and have not improved since the early 1990s. We identified risks factors associated with earlier mortality and found that those with univentricular circulation and totally anomalous pulmonary venous connection had the worst prognosis. Survival was higher in those with biventricular circulation.

BACKGROUND: Low socioeconomic status (SES) has emerged as an important risk factor for higher short-term mortality and neurodevelopmental outcomes in children with hypoplastic left heart syndrome and related anomalies; yet little is known about how SES affects these outcomes over the long-term. METHODS: We linked data from the Single Ventricle Reconstruction trial to US Census Bureau data to analyze the relationship of neighborhood SES tertiles with mortality and transplantation, neurodevelopment, quality of life, and functional status at 5 and 6 years post–Norwood procedure (N = 525). Cox proportional hazards regression and linear regression were used to assess the association of SES with mortality and neurodevelopmental outcomes, respectively. RESULTS: Patients in the lowest SES tertile were more likely to be racial minorities, older at stage 2 and Fontan procedures, and to have more complications and fewer cardiac catheterizations over follow-up (all P < .05) compared with patients in higher SES tertiles. Unadjusted mortality was highest for patients in the lowest SES tertile and lowest in the highest tertile (41% vs 29%, respectively; log-rank P = .027). Adjustment for patient birth and Norwood factors attenuated these differences slightly (P = .055). Patients in the lowest SES tertile reported lower functional status and lower fine motor, problem-solving, adaptive behavior, and communication skills at 6 years (all P < .05). These differences persisted after adjustment for baseline and post-Norwood factors. Quality of life did not differ by SES. CONCLUSIONS: Among patients with hypoplastic left heart syndrome, those with low SES have worse neurodevelopmental and functional status outcomes at 6 years. These differences were not explained by other patient or clinical characteristics.

OBJECTIVES: To evaluate the effectiveness of a stepped-wedge randomized trial of Development of Systems and Education for Human Papillomavirus Vaccination (DOSE HPV), a multilevel intervention. METHODS: DOSE HPV is a 7-session program that includes interprofessional provider education, communication training, data feedback, and tailored systems change. Five primary care pediatric and/or family medicine practices completed interventions between 2016 and 2018; all chose to initiate vaccination at ages 9 to 10. We compared vaccination rates in the preintervention, intervention, and postintervention periods among 9- to 17-year-olds using random-effects generalized linear regression models appropriate for stepped-wedge design, accounting for calendar time and clustering of patients by providers and clinic. Outcomes included (1) the likelihood that eligible patients would receive vaccination during clinic visits; (2) the likelihood that adolescents would complete the series by age 13; and (3) the cumulative effect on population-level vaccine initiation and completion rates. Postintervention periods ranged from 6 to 18 months. RESULTS: In the intervention and postintervention periods, the adjusted likelihood of vaccination at an eligible visit increased by >10 percentage points for ages 9 to 10 and 11 to 12, and completion of the vaccine series by age 13 increased by 4 percentage points (P < .001 for all comparisons). Population-level vaccine initiation coverage increased from 75% (preintervention) to 84% (intervention) to 90% (postintervention), and completion increased from 60% (preintervention) to 63% (intervention) to 69% (postintervention). CONCLUSIONS: Multilevel interventions that include provider education, data feedback, tailored systems changes, and early initiation of the human papillomavirus vaccine series may improve vaccine series initiation and completion beyond the conclusion of the intervention period.

The coronavirus disease 2019 pandemic has affected nearly every aspect of medicine and raises numerous moral dilemmas for clinicians. Foremost of these quandaries is how to delineate and implement crisis standards of care and, specifically, how to consider how health care resources should be distributed in times of shortage. We review basic principles of disaster planning and resource stewardship with ethical relevance for this and future public health crises, explore the role of illness severity scoring systems and their limitations and potential contribution to health disparities, and consider the role for exceptionally resource-intensive interventions. We also review the philosophical and practical underpinnings of crisis standards of care and describe historical approaches to scarce resource allocation to offer analysis and guidance for pediatric clinicians. Particular attention is given to the impact on children of this endeavor. Although few children have required hospitalization for symptomatic infection, children nonetheless have the potential to be profoundly affected by the strain on the health care system imposed by the pandemic and should be considered prospectively in resource allocation frameworks.