Adverse childhood experiences in children and adolescents with sickle cell disease: A retrospective cohort study.

BACKGROUND: Adverse childhood experiences (ACEs) are linked to poor health outcomes; however, the relationship between ACEs and health outcomes among children and adolescents with sickle cell disease (SCD) has limited documentation in the published literature. PROCEDURE: This retrospective cohort study involved 45 children and 30 adolescents. Participants were screened using the Center for Youth Wellness ACE Questionnaire. Parents completed the questionnaire for children. Adolescents provided self-report. ACEs were treated as continuous and categorical scales: 0-1 verus ≥2 original ACEs (individual and/or familial level); 0-1 versus ≥2 additional ACEs (community level); and 0-3 versus ≥4 expanded ACEs (original + additional). Pain and acute chest syndrome events were compared using Wilcoxon rank-sum tests, and correlated with cumulative ACE scores using Spearman's correlation. Multivariable models were fitted to examine the association between ACEs and pain/acute chest syndrome. RESULTS: The cumulative number of original ACEs positively correlated with acute chest syndrome events (rho = .53, p = .003) and pain (rho = .40, p = .028) among adolescents. Adolescents with ≥2 versus 0-1 original ACEs had a higher number of acute chest syndrome events (4.9 ± 2.6 vs. 1.6 ± 2.2, p = .002); however, this association was confounded by asthma. Acute chest syndrome events and hospitalizations for pain did not differ among child ACE groups. Emergency department (ED) pain visits were higher among children with ≥4 versus 0-3 expanded ACEs (1.6 ± 2.8 vs. 3.3 ± 3.2, p = .042), even after controlling for SCD genotype, asthma, disease-modifying treatment, and follow-up years (p = .027). CONCLUSION: ACEs are linked to increased morbidity among children and adolescents with SCD. Prospective studies are needed to further understand this relationship and test ACE-protective remedies.

Development of a Multidisciplinary Medical Home Program for NICU Graduates.

OBJECTIVE: Typical primary care practices are often not equipped to meet the medical, developmental or social needs of infants discharged from a neonatal intensive care unit (NICU). These needs are exacerbated for infants and caregivers residing in poverty. This article discusses a multidisciplinary, family-centered medical home designed to address the needs of this special population. METHODS: This is a descriptive analysis of a cohort of patients in the Next Steps Program (NSP), a multidisciplinary primary care medical home. Key program elements include: continuity of care from the NICU to primary care, routine developmental surveillance, care coordination, and proactive screening to address medical and social needs. RESULTS: The NSP has become a primary referral source for local NICUs, with a total of 549 medically fragile infants enrolled from its inception in 2011 through 2016. Caregivers and patients experience psychosocial stressors at averages statistically significantly higher than the rest of the Commonwealth of Pennsylvania and the US. Although patients in the program use medical resources beyond that of typically developing infants, hospital utilization among this patient cohort is trending down. DISCUSSION: Caring for medically fragile NICU graduates can be daunting for families given the array of necessary services, supports, and resources to maximize their potential. A multidisciplinary primary care medical home, such as the NSP, is a successful model of patient care demonstrating favorable associations with health care utilization, care coordination, and addressing/improving family functioning and their experience.

Hot topics, urgent priorities, and ensuring success for racial/ethnic minority young investigators in academic pediatrics.

BACKGROUND: The number of racial/ethnic minority children will exceed the number of white children in the USA by 2018. Although 38% of Americans are minorities, only 12% of pediatricians, 5% of medical-school faculty, and 3% of medical-school professors are minorities. Furthermore, only 5% of all R01 applications for National Institutes of Health grants are from African-American, Latino, and American Indian investigators. Prompted by the persistent lack of diversity in the pediatric and biomedical research workforces, the Academic Pediatric Association Research in Academic Pediatrics Initiative on Diversity (RAPID) was initiated in 2012. RAPID targets applicants who are members of an underrepresented minority group (URM), disabled, or from a socially, culturally, economically, or educationally disadvantaged background. The program, which consists of both a research project and career and leadership development activities, includes an annual career-development and leadership conference which is open to any resident, fellow, or junior faculty member from an URM, disabled, or disadvantaged background who is interested in a career in academic general pediatrics. METHODS: As part of the annual RAPID conference, a Hot Topic Session is held in which the young investigators spend several hours developing a list of hot topics on the most useful faculty and career-development issues. These hot topics are then posed in the form of six "burning questions" to the RAPID National Advisory Committee (comprised of accomplished, nationally recognized senior investigators who are seasoned mentors), the RAPID Director and Co-Director, and the keynote speaker. RESULTS/CONCLUSIONS: The six compelling questions posed by the 10 young investigators-along with the responses of the senior conference leadership-provide a unique resource and "survival guide" for ensuring the academic success and optimal career development of young investigators in academic pediatrics from diverse backgrounds. A rich conversation ensued on the topics addressed, consisting of negotiating for protected research time, career trajectories as academic institutions move away from an emphasis on tenure-track positions, how "non-academic" products fit into career development, racism and discrimination in academic medicine and how to address them, coping with isolation as a minority faculty member, and how best to mentor the next generation of academic physicians.

Racial and ethnic inequities in the quality of paediatric care in the USA: a review of quantitative evidence.

Racial and ethnic inequities in paediatric care have received increased research attention over the past two decades, particularly in the past 5 years, alongside an increased societal focus on racism. In this Series paper, the first in a two-part Series focused on racism and child health in the USA, we summarise evidence on racial and ethnic inequities in the quality of paediatric care. We review studies published between Jan 1, 2017 and July 31, 2022, that are adjusted for or stratified by insurance status to account for group differences in access, and we exclude studies in which differences in access are probably driven by patient preferences or the appropriateness of intervention. Overall, the literature reveals widespread patterns of inequitable treatment across paediatric specialties, including neonatology, primary care, emergency medicine, inpatient and critical care, surgery, developmental disabilities, mental health care, endocrinology, and palliative care. The identified studies indicate that children from minoritised racial and ethnic groups received poorer health-care services relative to non-Hispanic White children, with most studies drawing on data from multiple sites, and accounting for indicators of family socioeconomic position and clinical characteristics (eg, comorbidities or condition severity). The studies discussed a range of potential causes for the observed disparities, including implicit biases and differences in site of care or clinician characteristics. We outline priorities for future research to better understand and address paediatric treatment inequities and implications for practice and policy. Policy changes within and beyond the health-care system, discussed further in the second paper of this Series, are essential to address the root causes of treatment inequities and to promote equitable and excellent health for all children.

Pediatric primary care clinicians' views on needs and challenges in caring for infants with intrauterine opioid exposure and their families.

Opioid use disorder (OUD) during pregnancy has risen in the U.S. over the past two decades, resulting in a growing number of children with intrauterine opioid exposure (IOE). Limited research exists supporting best practices to optimize primary care for these children and their families, particularly mothers with OUD. Using a modified Delphi method, we surveyed pediatric primary care clinicians from a single children's health care system regarding their experiences in caring for this population. In Phase 1, open-ended survey questions inquired about needs and challenges facing these infants, their families, and clinicians and resources within primary care. After thematic analysis, the most frequent responses were presented as a Phase 2 survey for clinicians to select their top five. Percentages for the most commonly selected top five themes were tabulated. Survey response rates were 58/139 (42%) for Phase 1 and 45/137 (33%) for Phase 2. For infants with IOE and their families, respondents identified parenting knowledge and family issues related to maternal OUD as top challenges, with limited resources to address them in primary care. Clinicians identified time constraints and follow-up issues as top challenges. Future intervention in pediatric primary care could include addressing parenting education, resource gaps, and best practice recommendations in caring for children with IOE.

Association of Positional Plagiocephaly and Developmental Delay Within a Primary Care Network.

OBJECTIVE: Previous research has suggested an association between plagiocephaly and developmental delay. However, study samples drawn from children seen in subspecialty clinics increase the potential for selection and referral bias. Our study evaluates the association between plagiocephaly and developmental delay and the timing of these diagnoses in a primary care setting, where plagiocephaly is commonly diagnosed and managed. METHODS: Our retrospective analysis used electronic medical record data from 45 primary care sites within a children's health system from 1999 to 2017, including children aged 0 to 5 years with diagnoses determined by physician diagnosis codes at primary care visits. Children were classified in the plagiocephaly group if diagnosis occurred by 12 months of age. Primary outcome was any developmental delay. Pearson χ2 test, Fisher exact test, and logistic regression analyses were conducted, with multivariable models adjusted for sex, race, ethnicity, insurance, prematurity status (22-36 weeks' gestation), primary care sites, birth year, and diagnoses of abnormal tone and torticollis. RESULTS: Of 77,108 patients seen by 12 months, 2315 (3.0%) were diagnosed with plagiocephaly, with an increase in diagnosis prevalence over the study time frame. Plagiocephaly was independently associated with an increased odds of any developmental delay diagnosis (adjusted odds ratio 1.50, 95% confidence interval 1.32-1.70). The diagnosis of plagiocephaly was recorded before the diagnosis of developmental delay in most cases when both diagnoses were present (374 of 404, 92.6%). CONCLUSION: Data from a large primary care cohort demonstrate an association between plagiocephaly and developmental delay, affirming findings in previous subspecialty literature.

Capacity Building for a New Multicenter Network Within the ECHO IDeA States Pediatric Clinical Trials Network.

Introduction: Research capacity building is a critical component of professional development for pediatrician scientists, yet this process has been elusive in the literature. The ECHO IDeA States Pediatric Clinical Trials Network (ISPCTN) seeks to implement pediatric trials across medically underserved and rural populations. A key component of achieving this objective is building pediatric research capacity, including enhancement of infrastructure and faculty development. This article presents findings from a site assessment inventory completed during the initial year of the ISPCTN. Methods: An assessment inventory was developed for surveying ISPCTN sites. The inventory captured site-level activities designed to increase clinical trial research capacity for pediatrician scientists and team members. The inventory findings were utilized by the ISPCTN Data Coordinating and Operations Center to construct training modules covering 3 broad domains: Faculty/coordinator development; Infrastructure; Trials/Research concept development. Results: Key lessons learned reveal substantial participation in the training modules, the importance of an inventory to guide the development of trainings, and recognizing local barriers to clinical trials research. Conclusions: Research networks that seek to implement successfully completed trials need to build capacity across and within the sites engaged. Our findings indicate that building research capacity is a multi-faceted endeavor, but likely necessary for sustainability of a unique network addressing high impact pediatric health problems. The ISPCTN emphasis on building and enhancing site capacity, including pediatrician scientists and team members, is critical to successful trial implementation/completion and the production of findings that enhance the lives of children and families.

Perceptions of Racism in Children and Youth (PRaCY): properties of a self-report instrument for research on children's health and development.

Experiences of racial discrimination have been demonstrated to be related to racial and ethnic disparities in mental and physical health and healthcare. There has been little study, however, of the relationship between racism and health in children, and few psychometrically valid and reliable instruments to measure Perceptions of Racism in Children and Youth (PRaCY) exist. This paper reports on the development and testing of such an instrument, the PRaCY. Development of the instrument began with open-ended qualitative interviews, from which a proto-questionnaire was created. The questionnaire gathered information on the prevalence, attribution, emotional responses, and coping responses to 23 situations identified by participants in the qualitative phase. The proto-questionnaire was administered to 277 children between the ages of 8 and 18 years (38% Latino/a, 31% African-American, 19% multiracial/multicultural, 7% West Indian/Caribbean, and 5% Other). Item analysis resulted in two developmentally appropriate 10-item instruments (one for ages 7-13, another for ages 14-18). Internal consistency reliability was strong (alpha = 0.78 for both versions of the instrument). Confirmatory factor analysis demonstrated good fit for both versions (younger-Comparative Fit Index (CFI): 0.967, Root Mean Square Error of Approximation (RMSEA): 0.047; older-CFI: 0.934, RMSEA: 0.056). Differential item functioning analyses demonstrated no group-specific biases in item response. PRaCY scores were appropriately associated with higher depressive symptom scores and elevated anxiety scores in the younger sample. Results indicate that the PRaCY is a valid and reliable instrument that measures perceptions of racism and discrimination in children and youth aged 8-18 from diverse racial/ethnic backgrounds.

A Social Network Analysis Approach for Contact Tracing in the Hospital Setting.

Since the beginning of the COVID-19 pandemic, the State of Delaware has implemented various strategies including a stay-at-home order, mask-wearing requirements in public places, and community-based testing to control the spread of the disease. Health systems across the U.S. have taken actions including symptom monitoring and screening for visitors and healthcare workers, providing personal protection equipment (PPE), and contact tracing of confirmed infected individuals to provide maximum possible protection for healthcare workers. Despite such efforts, there remains a significant risk of intra-hospital transmission of COVID-19. Healthcare workers who contact patients with COVID-19 or were exposed to the disease in the community may transmit the infection to coworkers in the inpatient setting. In addition to universal and case-based precautions to prevent exposure and disease transmission, contact tracing is essential to minimizing the impact of outbreaks among healthcare workers and the community. A rapid increase in cases can quickly diminish hospital infection control and prevention program capacity to perform high-quality contact tracing. This article will describe an approach using the application of social network analysis (SNA) and Electronic Medical Records (EMR) to enhance the current efforts in COVID-19 contact tracings.

Discrimination and Mental Health in a Representative Sample of African-American and Afro-Caribbean Youth.

BACKGROUND: Racism and discrimination are psychosocial stressors that affect the health of minority populations. While discrimination has been associated with poor mental health, little is known about the relationship between discrimination and mental health outcomes in youth nationally. Furthermore, mental and behavioral health consequences of discrimination may differ in different minority groups. OBJECTIVE: The goal of this study is to determine (1) how common perceptions of discrimination are in a nationally representative sample of African-American (AA) and Afro-Caribbean (AC) teens, (2) the relationship between discrimination and mental health conditions, and (3) whether discrimination has different associations with mental health in AA and AC youth. DESIGN: Cross-sectional comparison study SETTING: National Survey of American Life-Adolescent Supplement, a nationwide sample of African-American and Afro-Caribbean youth drawn from a nationally representative household survey of AA and AC population PARTICIPANTS: One thousand, one hundred and seventy AA and AC youth between 13 and 17 years EXPOSURE: Experiences with discrimination (Everyday Discrimination Scale) MAIN OUTCOMES: Lifetime and past 12-month major depression and anxiety RESULTS: Ninety percent of AA and 87% of AC youth experienced discrimination. Discrimination was significantly associated with lifetime and 12-month major depression and lifetime and 12-month anxiety. There were no differences in the associations between discrimination and mental health between AA and AC youth except for lifetime anxiety: as discrimination increased, the likelihood of lifetime anxiety disorder increased at a higher rate among AC youth compared to AA. CONCLUSIONS: Discrimination is a common psychosocial stressor in African-American and Afro-Caribbean youth. It is associated with poor mental health outcomes. There was no difference in the occurrence of discrimination between African-American and Afro-Caribbean youth or in its mental health consequences.

Intergenerational Associations of Parent Adverse Childhood Experiences and Child Health Outcomes.

BACKGROUND: Adverse childhood experiences (ACEs) robustly predict future morbidity and mortality. Researchers are just beginning to investigate intergenerational effects. We hypothesize there are intergenerational associations between parent ACE exposure and worse child health, health behaviors, and health care access and use. METHODS: We linked data from 2 population-based cross-sectional telephone surveys in Philadelphia, Pennsylvania, that were used to ask parents about their past exposure to ACEs and their child's health, respectively. Participants were 350 parent-child dyads. Logistic regression models adjusted for parent and child characteristics. Parent ACE score was used to summarize indicators of parents' childhood adversity. Child health outcomes were poor overall health status, asthma diagnosis, obesity, low fruit and vegetable consumption, any soda consumption, inadequate physical activity, excessive television watching, no health insurance, no usual source of health care, and no dental examination in past 12 months. RESULTS: Of adult participants, 80% were female participants and 45% were non-Latino African American. Eighty-five percent of parents had experienced ≥1 ACE and 18% had experienced ≥6 ACEs. In adjusted models, each additional parent ACE was associated with higher odds of poor child overall health status (odds ratio [OR] = 1.19; 95% confidence interval [CI]: 1.07-1.32), asthma (OR = 1.17; 95% CI: 1.05-1.30), and excessive television watching (OR = 1.16; 95% CI: 1.05-1.28). CONCLUSIONS: The full scope of the health effects of ACEs may not be limited to the exposed individual, highlighting the need for a 2-generation approach to addressing the social determinants of child health.

Developing a Community-Wide Initiative to Address Childhood Adversity and Toxic Stress: A Case Study of The Philadelphia ACE Task Force.

The Philadelphia ACE Task Force is a community based collaborative of health care providers, researchers, community-based organizations, funders, and public sector representatives. The mission of the task force is to provide a venue to address childhood adversity and its consequences in the Philadelphia metropolitan region. In this article we describe the origins and metamorphosis of the Philadelphia ACE Task Force, which initially was narrowly focused on screening for adverse childhood experiences (ACEs) in health care settings but expanded its focus to better represent a true community-based approach to sharing experiences with addressing childhood adversity in multiple sectors of the city and region. The task force has been successful in developing a research agenda and conducting research on ACEs in the urban context, and has identified foci of local activity in the areas of professional training and workforce development, community education, and local practical interventions around adversity, trauma, and resiliency. In this article we also address the lessons learned over the first 5 years of the task force's existence and offers recommendations for future efforts to build a local community-based ACEs collaborative.

A New EHR Training Curriculum and Assessment for Pediatric Residents.

Background Conventional classroom Electronic Health Record (EHR) training is often insufficient for new EHR users. Studies suggest that enhanced training with a hands-on approach and closely supported clinical use is beneficial. Objectives Our goals were to develop an enhanced EHR learning curriculum for Post Graduate Year 1 (PGY1) residents and measure changes in EHR skill proficiency, efficiency, and self-efficacy. Methods A novel three-phase, multimodal enhanced EHR curriculum was designed for a cohort of PGY1 residents. After basic training, residents began phase 1 of enhanced training, including demonstrations, live practice, and order set review. Phase 2 involved skills-oriented assignments, role playing, and medication entry. Phase 3 included shadowing, scribing histories, and supervised order entry. Residents' EHR skills and attitudes were measured and compared before and after the enhanced curriculum via proficiency test and a survey of efficiency and self-efficacy. Results Nineteen of 26 PGY1 residents participated in the study (73%). There was significant improvement in mean proficiency scores and two of the five individual proficiency scores. There were significant improvements in most efficiency survey responses from pre- to postintervention. For the self-efficacy presurvey, many PGY1s reported to be "very" or "somewhat confident" performing each of the five tasks, and perceptions did not improve or worsened on most postsurvey responses. The greatest resource was the time required to design and deliver the enhanced training. Conclusion An enhanced training curriculum along with a proficiency assessment was developed and described here. An enhanced training curriculum significantly improved PGY1 EHR efficiency and some measures of proficiency but not self-efficacy. This intervention may support improved EHR-related clinic workflows, which ultimately could enable residents and preceptors to prioritize patient care and time for clinical education.

Household and community-level Adverse Childhood Experiences and adult health outcomes in a diverse urban population.

Adverse Childhood Experiences (ACEs), which include family dysfunction and community-level stressors, negatively impact the health and well being of children throughout the life course. While several studies have examined the impact of these childhood exposures amongst racially and socially diverse populations, the contribution of ACEs in the persistence of socioeconomic disparities in health is poorly understood. To determine the association between ACEs and health outcomes amongst a sample of adults living in Philadelphia and examine the moderating effect of Socioeconomic Status (SES) on this association, we conducted a cross-sectional survey of 1,784 Philadelphia adults, ages 18 and older, using random digit dialing methodology to assess Conventional ACEs (experiences related to family dysfunction), Expanded ACEs (community-level stressors), and health outcomes. Using weighted, multivariable logistic regression analyses along with SES stratified models, we examined the relationship between ACEs and health outcomes as well as the modifying effect of current SES. High Conventional ACE scores were significantly associated with health risk behaviors, physical and mental illness, while elevated Expanded ACE scores were associated only with substance abuse history and sexually transmitted infections. ACEs did have some differential impacts on health outcomes based on SES. Given the robust impact of Conventional ACEs on health, our results support prior research highlighting the primacy of family relationships on a child's life course trajectory and the importance of interventions designed to support families. Our findings related to the modifying effect of SES may provide additional insight into the complex relationship between poverty and childhood adversity.