BACKGROUND: Women with disability face more stressors around the time of pregnancy than women without disability. Limited research exists on stressors experienced due to the COVID-19 pandemic among pregnant and postpartum women with and without disability. OBJECTIVE: Examine the association between disability status and experiencing certain COVID-19 stressors among women with a recent live birth. METHODS: We analyzed Pregnancy Risk Assessment Monitoring System data from 14 jurisdictions implementing the Disability and Maternal COVID-19 Experiences supplement surveys among women with a live birth from June-December 2020. We examined the prevalence of 12 individual stressors and seven stressor types (any stressor, economic, housing, childcare, food insecurity, mental health, and partner-related), by disability status. For each stressor type, we calculated adjusted prevalence ratios (aPRs) using logistic regression to determine if women with disability were more likely to experience particular stressor types, controlling for respondent age, education, race and ethnicity, marital status, and payment at delivery. RESULTS: Among 5961 respondents, 6.3 % reported a disability. Compared with women without disability, those with disability were more likely to experience any stressor (aPR 1.19, 95 % CI 1.14-1.24), including economic (aPR 1.38, 95 % CI 1.23-1.56), housing (aPR 1.56, 95 % CI 1.09-2.24), childcare (aPR 1.32, 95 % CI 1.11-1.58), food insecurity (aPR 2.18, 95 % CI 1.72-2.78), mental health (aPR 1.49, 95 % CI 1.37-1.62), and partner-related stressors (aPR 2.00, 95 % CI 1.55-2.58). CONCLUSIONS: Findings highlight the challenges experienced by pregnant and postpartum women with disability during public health emergencies and considerations for this population in preparedness planning.

OBJECTIVES: This study aimed to estimate the prevalence of homelessness shortly before or during pregnancy and describe differences in maternal characteristics and adverse birth outcomes between people reporting homelessness and not reporting homelessness. METHODS: We used 2016-2020 Pregnancy Risk Assessment Monitoring System (PRAMS) data from 31 sites to estimate the prevalence of self-reported homelessness during the 12 months before giving birth. We used logistic regression models to evaluate the association between homelessness and adverse birth outcomes, specifically small for gestational age (SGA), low birth weight (LBW), and preterm birth (PTB). RESULTS: Of 138,603 respondents, 4,045 reported homelessness, representing 2.4% of weighted respondents. Respondents reporting homelessness differed from respondents who did not report homelessness in maternal demographic characteristics, health conditions, behavioral and environmental risk factors, and adequacy of prenatal care. In unadjusted models, homelessness was associated with higher prevalences of SGA, LBW, and PTB (PR 1.38, 95% CI 1.21-1.57; PR 1.73, 95% CI 1.56-1.91; PR 1.42, 95% CI 1.25-1.61; respectively). After adjusting for maternal age, race and ethnicity, education, BMI, and cigarette smoking, prevalence ratios were attenuated and no longer significant. CONCLUSIONS FOR PRACTICE: Although homelessness was not independently associated with adverse birth outcomes in adjusted models, people reporting homelessness before or during pregnancy represent a group at increased risk of inadequate health care utilization and adverse birth outcomes due to other underlying demographic and social factors. Health care providers can play a critical role in identifying if patients may be experiencing homelessness and facilitating connections to social support.

Intimate partner violence (IPV) can include emotional, physical, or sexual violence. IPV during pregnancy is a preventable cause of injury and death with negative short- and long-term impacts for pregnant women, infants, and families. Using data from the 2016-2022 Pregnancy Risk Assessment Monitoring System in nine U.S. jurisdictions, CDC examined associations between IPV during pregnancy among women with a recent live birth and the following outcomes: prenatal care initiation, health conditions during pregnancy (gestational diabetes, pregnancy-related hypertension, and depression), substance use during pregnancy, and infant birth outcomes. Overall, 5.4% of women reported IPV during pregnancy. Emotional IPV was most prevalent (5.2%), followed by physical (1.5%) and sexual (1.0%) IPV. All types were associated with delayed or no prenatal care; depression during pregnancy; cigarette smoking, alcohol use, marijuana or illicit substance use during pregnancy; and having an infant with low birth weight. Physical, sexual, and any IPV were associated with having a preterm birth. Physical IPV was associated with pregnancy-related hypertension. Evidence-based prevention and intervention strategies that address multiple types of IPV are important for supporting healthy parents and families because they might reduce pregnancy complications, depression and substance use during pregnancy, and adverse infant outcomes.

During mid-March 2020, the World Health Organization (WHO) declared that the spread of COVID-19, the respiratory illness caused by SARS-CoV-2, was a pandemic. This novel emerging infectious disease spread insidiously and swiftly around the globe, undeterred by geographic borders. Countries reacted to COVID-19 with attempts to control transmission, including isolation and quarantine orders, social distancing recommendations, and mask requirements. Responses at the local, national, regional, and international levels involved public health experts, field epidemiologists (disease detectives), clinicians, researchers, policy makers, political leaders, and civil authorities. | | Artists from across the globe also responded to the effects of COVID-19 in myriad ways, communicating a wide range of perspectives and experiences about the pandemic through imagery, music, dance, and writing. Efforts to collect and share some of this artistic output via online platforms helped connect artists and audiences to a greater degree than would otherwise have been possible during the pandemic. For example, in spring 2020 the Washington Post invited readers to submit artwork created during the early months of the COVID-19 outbreak. The paper featured 20 works, selected from more than 650 submissions, in the article “The Best Art Created by Washington Post Readers during the Pandemic.” Michael Cavna, a writer-artist-cartoonist who penned the story, explained, “The Post considered not only the quality and creativity of the art, but also the fascinating accompanying backstories. Enduring quarantines, some artists rendered what isolation and loneliness felt like, while others depicted longed-for social scenes from a pre-pandemic time.”

People experiencing homelessness (PEH) are at disproportionate risk of becoming infected and having severe illness from coronavirus disease 2019 (COVID-19), especially when residing in congregate settings like homeless shelters. Behavioral health problems related to substance use disorder (SUD) and severe mental illness (SMI) may have created additional challenges for PEH to practice prevention measures like mask wearing, physical distancing, handwashing, and quarantine and isolation. The study objective was to understand the perceived barriers PEH face regarding COVID-19 non-pharmaceutical prevention strategies and identify recommendations for overcoming barriers. From August-October 2020, qualitative phone interviews with 50 purposively selected behavioral health professionals across the United States serving PEH with SUD or SMI were conducted. Professionals described that PEH faced barriers to prevention that were structural (e.g., access to necessary resources), behavioral (related to SUD or SMI), or related to the priority of other needs. Recommendations to overcome these barriers included providing free prevention resources (e.g., masks and hand sanitizer), providing education about importance of prevention strategies, and prioritizing access to stable housing. Interviews took place before COVID-19 vaccines were available, so barriers to vaccination are not included in this paper. Findings can help support tailored approaches during COVID-19 and future public health threats.

Confronted with a novel coronavirus, countries worldwide were forced to rapidly adjust their public health systems, platforms, and tools to respond to COVID-19. The US Centers for Disease Control and Prevention (CDC) and its global partners adapted health systems and programs originally developed for other purposes, such as controlling the HIV/AIDS pandemic through the US President’s Emergency Plan for AIDS Relief (PEPFAR), Global Health Security Agenda implementation, influenza surveillance, and vaccine-preventable disease elimination and eradication. This special supplement of Emerging Infectious Diseases highlights responses to the early phases of the COVID-19 pandemic from >80 countries, spanning 6 continents and representing >130 organizations. This article summarizes global adaptations of core public health functions during COVID-19: surveillance, information, and laboratory systems; workforce, institutional, and public health capacity; and clinical and health services delivery.

The United States is experiencing a syndemic of homelessness, substance use disorder, and mental health conditions, which has been further exacerbated by the COVID-19 pandemic. Although it is expected that mitigation strategies will curb community transmission of COVID-19, the unintended consequences of social isolation on mental health and substance use are a growing public health concern. Awareness of changing mental health and substance use treatment needs due to the pandemic is critical to understanding what additional services and support are needed during and post-pandemic, particularly among people experiencing homelessness who have pre-existing serious mental illness or substance use disorder. To evaluate these effects and support our understanding of mental health and substance use outcomes of the COVID-19 pandemic, we conducted a qualitative study where behavioral health providers serving people experiencing homelessness described the impact of COVID-19 among their clients throughout the United States. Behavioral health providers shared that experiencing social isolation worsened mental health conditions and caused some people to return to substance use and fatally overdose. However, some changes initiated during the pandemic resulted in positive outcomes, such as increased client willingness to discuss mental health topics. Our findings provide additional evidence that the social isolation experienced during the pandemic has been detrimental to mental health and substance use outcomes, especially for people experiencing homelessness.

The COVID-19 pandemic caused disruptions in behavioral health services (BHS), essential for people experiencing homelessness (PEH). BHS changes created barriers to care and opportunities for innovative strategies for reaching PEH. The authors conducted 50 qualitative interviews with behavioral health providers in the USA during August-October 2020 to explore their observations of BHS changes for PEH. Interviews were transcribed and entered into MAXQDA for analysis and to identify salient themes. The largest impact from COVID-19 was the closure or limited hours for BHS and homeless shelters due to mandated "stay-at-home" orders or staff working remotely leading to a disconnection in services and housing linkages. Most providers initiated telehealth services for clients, yielding positive outcomes. Implications for BHS are the need for long-term strategies, such as advances in communication technology to support BHS and homeless services and to ensure the needs of underserved populations are met during public health emergencies.

BACKGROUND: The Field Epidemiology Training Program (FETP)-Frontline is a three-month in-service training aimed at improving surveillance officers' capacity to collect, analyze, and interpret surveillance data, and respond to health emergencies. We evaluated the effectiveness of the FETP-Frontline which was introduced in Ethiopia in 2016. METHODS: We conducted a comparative, randomized cross-sectional study to assess surveillance-related knowledge, skills, and performance among trained and untrained officers using a structured questionnaire and observation checklist. We compared the knowledge, skills, and performance scores of trained and untrained officers using the Fisher's Exact test, chi-square test,and t-test at p-value<0.05 for statistical significance. RESULTS: We conducted the study among 74 trained and 76 untrained surveillance officers. About three-quarters of all participants were male, and the average age was 34 (8.6) years. Completeness and timeliness of surveillance reports were significantly higher among trained than untrained surveillance officers. The trained officers were more likely to have produced epidemiologic bulletins (55% vs 33%), conducted active surveillance six months before the survey (88% vs 72%), provided surveillance training (88% vs 65%), conducted strengths, weakness, opportunities, and threats (SWOT) analysis (55% vs 17%), and utilized Microsoft Excel to manage surveillance data (87% vs 47%). We also observed improved surveillance officers' perceived skills and knowledge, and the availability and quality of surveillance formats and reports among the trained group. CONCLUSIONS: FETP-Frontline trained surveillance officers demonstrated better knowledge, skills, and performance in most surveillance activities compared to the untrained officers. FETP-Frontline can address competency gaps among district surveillance officers in Ethiopia and other countries. Scaling up the program to cover unreached districts can enable achieving the human resource development core capacity requirement of the International Health Regulations 2005.

OBJECTIVES: The success of National Public Health Institutes (NPHIs) in low-income and middle-income countries (LMICs) is critical to countries' ability to deliver public health services to their populations and effectively respond to public health emergencies. However, empirical data are limited on factors that promote or are barriers to the sustainability of NPHIs. This evaluation explored stakeholders' perceptions about enabling factors and barriers to the success and sustainability of NPHIs in seven countries where the U.S. Centers for Disease Control and Prevention (CDC) has supported NPHI development and strengthening. DESIGN: Qualitative study. SETTING: Cambodia, Colombia, Liberia, Mozambique, Nigeria, Rwanda and Zambia. PARTICIPANTS: NPHI staff, non-NPHI government staff, and non-governmental and international organisation staff. METHODS: We conducted semistructured, in-person interviews at a location chosen by the participants in the seven countries. We analysed data using a directed content analysis approach. RESULTS: We interviewed 43 NPHI staff, 29 non-NPHI government staff and 24 staff from non-governmental and international organisations. Participants identified five enabling factors critical to the success and sustainability of NPHIs: (1) strong leadership, (2) financial autonomy, (3) political commitment and country ownership, (4) strengthening capacity of NPHI staff and (5) forming strategic partnerships. Three themes emerged related to major barriers or threats to the sustainability of NPHIs: (1) reliance on partner funding to maintain key activities, (2) changes in NPHI leadership and (3) staff attrition and turnover. CONCLUSIONS: Our findings contribute to the scant literature on sustainability of NPHIs in LMICs by identifying essential components of sustainability and types of support needed from various stakeholders. Integrating these components into each step of NPHI development and ensuring sufficient support will be critical to strengthening public health systems and safeguarding their continuity. Our findings offer potential approaches for country leadership to direct efforts to strengthen and sustain NPHIs.

National Public Health Institutes (NPHIs) can strengthen countries' public health capacities to prevent, detect, and respond to public health emergencies. This qualitative evaluation assessed the role of the US Centers for Disease Control and Prevention (CDC) in NPHI development and strengthening of public health functions. We interviewed NPHI staff (N = 43), non-NPHI government staff (N = 29), and non-governmental organization staff (N = 24) in seven countries where CDC has supported NPHI development: Cambodia, Colombia, Liberia, Mozambique, Nigeria, Rwanda, and Zambia. Participants identified four areas of support that were the most important: workforce capacity building, technical assistance for key public health functions, identifying institutional gaps and priorities, and funding to support countries' priorities. Participants underscored the need for capacity building directed toward country-driven priorities during planning and implementation. Continued support for NPHI development from CDC and other partners is vital to building stronger public health systems, improving population health, and strengthening global health security.

OBJECTIVES: We applied a novel Outbreak Costing Tool (OCT), developed by the US Centers for Disease Control and Prevention (CDC), to estimate the costs of investigating and responding to an anthrax outbreak in Tanzania. We also evaluated the OCT's overall utility in its application to a multisectoral outbreak response. METHODS: We collected data on direct costs associated with a human and animal anthrax outbreak in Songwe Region (December 2018 to January 2019) using structured questionnaires from key-informants. We performed a cost analysis by entering direct costs data into the OCT, grouped into seven cost categories: labor, office, travel and transport, communication, laboratory support, medical countermeasures, and consultancies. RESULTS: The total cost for investigating and responding to this outbreak was estimated at 102,232 United States dollars (USD), with travel and transport identified as the highest cost category (62,536 USD) and communication and consultancies as the lowest, with no expenditure, for the combined human and animal health sectors. CONCLUSIONS: Multisectoral investigation and response may become complex due to coordination challenges, thus allowing escalation of public health impacts. A standardized framework for collecting and analysing cost data is vital to understanding the nature of outbreaks, in anticipatory planning, in outbreak investigation and in reducing time to intervention. Pre-emptive use of the OCT will also reduce overall and specific (response period) intervention costs for the disease. Additional aggregation of the costs by government ministries, departments and tiers will improve the use of the tool to enhance sectoral budget planning for disease outbreaks in a multisectoral response.

Rapid detection and response to infectious disease outbreaks requires a robust surveillance system with a sufficient number of trained public health workforce personnel. The Frontline Field Epidemiology Training Program (Frontline) is a focused 3-month program targeting local ministries of health to strengthen local disease surveillance and reporting capacities. Limited literature exists on the impact of Frontline graduates on disease surveillance completeness and timeliness reporting. Using routinely collected Ministry of Health data, we mapped the distribution of graduates between 2014 and 2017 across 47 Kenyan counties. Completeness was defined as the proportion of complete reports received from health facilities in a county compared with the total number of health facilities in that county. Timeliness was defined as the proportion of health facilities submitting surveillance reports on time to the county. Using a panel analysis and controlling for county-fixed effects, we evaluated the relationship between the number of Frontline graduates and priority disease reporting of measles. We found that Frontline training was correlated with improved completeness and timeliness of weekly reporting for priority diseases. The number of Frontline graduates increased by 700%, from 57 graduates in 2014 to 456 graduates in 2017. The annual average rates of reporting completeness increased from 0.8% in 2014 to 55.1% in 2017. The annual average timeliness reporting rates increased from 0.1% in 2014 to 40.5% in 2017. These findings demonstrate how global health security implementation progress in workforce development may influence surveillance and disease reporting.

If you want to travel fast, go alone; if you want to travel far, go together. | | —African Proverb | | The US Centers for Disease Control and Prevention's (CDC) Strategic Framework articulates 3 agency priorities: secure global health and America's preparedness, eliminate disease, and end epidemics.1 After 5 years of implementing the Global Health Security Agenda (GHSA),2-5 we have learned many lessons. While more work remains in global health security, documenting lessons learned is imperative to provide the evidence base for the next steps in global health security implementation. The theme of this Supplement to Health Security is: “what works—lessons learned in global health security implementation.” The information shared in this compilation is intended to add value to the efforts of everyone interested and engaged in health security.

Although the economic consequences of epidemic outbreaks to affected areas are often well documented, little is known about how these might carry over into the economies of unaffected regions. In the absence of direct pathogen transmission, global trade is one mechanism through which geographically distant epidemics could reverberate to unaffected countries. This study explores the link between global public health events and U.S. economic outcomes by evaluating the role of the 2014 West Africa Ebola outbreak in U.S. exports and exports-supported U.S. jobs, 2005-2016. Estimates were obtained using difference-in-differences models where sub-Saharan Africa countries were assigned to treatment and comparison groups based on their Ebola transmission status, with controls for observed and unobserved time-variant factors that may independently influence trends in trade. Multiple model specification checks were performed to ensure analytic robustness. The year of peak transmission, 2014, was estimated to result in $1.08 billion relative reduction in U.S. merchandise exports to Ebola-affected countries, whereas estimated losses in exports-supported U.S. jobs exceeded 1,200 in 2014 and 11,000 in 2015. These findings suggest that remote disruptions in health security might play a role in U.S. economic indicators, demonstrating the interconnectedness between global health and aspects of the global economy and informing the relevance of health security efforts.

To achieve compliance with the revised World Health Organization International Health Regulations (IHR 2005), countries must be able to rapidly prevent, detect, and respond to public health threats. Most nations, however, remain unprepared to manage and control complex health emergencies, whether due to natural disasters, emerging infectious disease outbreaks, or the inadvertent or intentional release of highly pathogenic organisms. The US Centers for Disease Control and Prevention (CDC) works with countries and partners to build and strengthen global health security preparedness so they can quickly respond to public health crises. This report highlights selected CDC global health protection platform accomplishments that help mitigate global health threats and build core, cross-cutting capacity to identify and contain disease outbreaks at their source. CDC contributions support country efforts to achieve IHR 2005 compliance, contribute to the international framework for countering infectious disease crises, and enhance health security for Americans and populations around the world.

In today’s interconnected world, an infectious disease outbreak that is not rapidly detected and controlled at its source can become a costly global health threat, both in lives lost and economic turmoil (1,2). Every year, thousands of outbreaks occur worldwide, many of which involve pathogens with pandemic potential. Since 2009, the World Health Organization (WHO) has declared public health emergencies of international concern for outbreaks of influenza A(H1N1) in 2009, Ebola in West Africa in 2014, and Zika in the Americas in 2015 (2). In 2007, the International Health Regulations 2005 (IHR 2005) entered into force, and all 196 state parties were legally bound to implement the core capacity required under the regulations. However, in 2014, almost two thirds of member states reported not being in compliance (3). To accelerate progress toward IHR 2005 compliance, the Global Health Security Agenda (GHSA) was launched by 29 countries, WHO, the Food and Agriculture Organization of the United Nations, and the World Organisation for Animal Health in 2014 and now includes >60 nations (4).

To reduce the health security risk and impact of outbreaks around the world, the US Centers for Disease Control and Prevention and its partners are building capabilities to prevent, detect, and contain outbreaks in 49 global health security priority countries. We examine the extent of economic vulnerability to the US export economy posed by trade disruptions in these 49 countries. Using 2015 US Department of Commerce data, we assessed the value of US exports and the number of US jobs supported by those exports. US exports to the 49 countries exceeded $308 billion and supported more than 1.6 million jobs across all US states in agriculture, manufacturing, mining, oil and gas, services, and other sectors. These exports represented 13.7% of all US export revenue worldwide and 14.3% of all US jobs supported by all US exports. The economic linkages between the United States and these global health security priority countries illustrate the importance of ensuring that countries have the public health capacities needed to control outbreaks at their source before they become pandemics.

On October 1, 2015, the United States required use of the Clinical Modification of the International Classification of Diseases, 10th Revision (ICD-10-CM) for diagnostic coding. This primer was written to assist the cleft care community with understanding and use of ICD-10-CM for diagnostic coding related to cleft lip and/or palate (CL/P).

BACKGROUND: On October 1, 2015, the United States required use of the Clinical Modification of the International Classification of Diseases, 10th Revision (ICD-10-CM) for diagnostic coding. The ICD-10-CM code set is limited to gross categories for cleft lip and/or cleft palate (using only four of a possible seven characters). METHODS: Herein, a clinically useful expansion of the ICD-10-CM code set is proposed to improve the diagnostic accuracy necessary for individual clinical, research, and statistical projects that require it. (This is similar to how the Centers for Disease Control and Prevention/British Paediatric Association Code served to extend the ICD-9 code base.) RESULTS: Our proposed expansion does not replace the required use of ICD-10-CM for clinical, administrative, or financial transactions. Rather, it is offered as an optional set of cleft codes that could be used in parallel to document true classification-level data with phenotypic accuracy. CONCLUSION: The expanded set is "collapsible" into the official ICD-10-CM codes; this improves compatibility of the expanded codes that would be contained in research and epidemiologic databases with the standard codes from hospital electronic medical record systems and administrative billing data.

In a 2012 meeting at the Centers for Disease Control and Prevention (CDC), key experts and stakeholders identified public health knowledge gaps about congenital heart defects (CHDs), namely prevalence of CHDs across the life span, long‐term outcomes of persons with CHDs, and health services delivery for persons with CHDs.1 These gaps, and strategies to address them, formed the basis of a CHD public health science agenda. The strategies included leveraging information in existing databases to examine the epidemiology, health outcomes, and health service utilization of the CHD population.1 Many databases with CHD data exist and are managed by hospitals, specialty organizations, partnerships, and public health and other governmental entities. Researchers may be familiar with some databases but not others. Anyone planning studies to address public health knowledge gaps may benefit from an understanding of this complex constellation of databases. | The Congenital Heart Public Health Consortium (CHPHC) was formed in 2009 as a collaboration of stakeholders with its mission to prevent CHDs and improve outcomes for affected individuals.2 The CHPHC created a database workgroup to increase awareness of opportunities to contribute to the public health science agenda for CHDs using existing databases. The workgroup, consisting of experts in various disciplines (cardiologists, surgeons, epidemiologists, health service researchers), identified databases located in Canada or the United States (US) with information on CHDs from 1990 onward. The goals of this article are to provide an overview of database types and to list examples of databases that may be used to address CHD public health knowledge gaps. IRB approval was not deemed necessary for this review.

PURPOSE: Clinical guidelines recommend repair of open spina bifida (SB) prenatally or within the first days of an infant's life. We examined maternal, infant, and health care system factors associated with time-to-repair among infants with postnatal repair. METHODS: This retrospective, statewide, population-based study examined infants with SB born in Florida 1998-2007, ascertained by the Florida Birth Defects Registry. We used procedure codes from hospital discharge records to identify the first recorded myelomeningocele repair (ICD-9 CM procedure code 03.52) among infants with birth hospitalizations. Using Poisson multivariable regression, we examined time-to-repair by hydrocephalus, SB type (isolated [no other coded major birth defect] versus non-isolated), and other selected factors. RESULTS: Of 199 infants with a recorded birth hospitalization and coded myelomeningocele repair, 87.9 % had hydrocephalus and 19.6 % had non-isolated SB. About 76.4 % of infants had repair by day 2 of life. In adjusted analyses, infants with hydrocephalus were more likely to have timely repair (adjusted prevalence ratio (aPR) = 1.48, 95 % confidence interval (CI) 1.02-2.14) than infants without hydrocephalus. SB type was not associated with repair timing. Infants born in lower level nursery care hospitals with were less likely to have timely repairs (aPR = 0.71, 95 % CI 0.52-0.98) than those born in higher level nursery care hospitals. CONCLUSIONS: Most infants with SB had surgical repair in the first 2 days of life. Lower level birth hospital nursery care was associated with later repairs. Prenatal diagnosis can facilitate planning for a birth hospital with higher level of nursery care, thus improving opportunities for timely repair.

The Ebola virus disease (Ebola) outbreak in West Africa (2014-2015) prompted domestic planning to address the scenario in which a traveler imports Ebola into the United States. Parental presence at the bedside of a child with suspected or confirmed Ebola emerged as a challenging issue for pediatric health care providers and public health practitioners. At the heart of the issue was the balance of family-centered care and appropriate infection control, which are not easily aligned in the setting of Ebola. In the following dialogue, pediatricians, who participated in discussions about parental presence during the evaluation of pediatric persons under investigation, and a public health ethicist discuss the interplay between family-centered care and appropriate infection control. Reaching a balance between the 2 ideals is difficult and may require the facility and providers to engage in a deliberate conversation to determine how they will handle parental presence for such high-risk scenarios, including Ebola and other high-consequence pathogens, in their institution. © 2016 Elsevier Inc.

OBJECTIVE: To compare academic outcomes between children with orofacial cleft (OFC) and children without major birth defects. DESIGN AND SETTING: In 2007-2008, we mailed questionnaires to a random sample of mothers of school-aged children with OFC and mothers of children without major birth defects (comparison group). The questionnaire included Likert-scale, closed-ended, and open-ended questions from validated instruments. We conducted bivariate and multivariable analyses on parent-reported educational outcomes and bivariate analyses on parent-reported presence of related medical conditions between children with isolated OFC and unaffected children. PATIENTS/PARTICIPANTS: A random sample of 504 parents of children with OFCs born 1996-2002 (age 5-12 years) were identified by the North Carolina Birth Defects Monitoring Program. A random sample of 504 parents of children without birth defects born 1996-2002 was selected from North Carolina birth certificates. Of the 289 (28.7%) respondents, we analyzed 112 children with isolated OFC and 138 unaffected children. MAIN OUTCOME MEASURES: Letter grades, school days missed, and grade retention. RESULTS: Parents of children with isolated OFC reported more developmental disabilities and hearing and speech problems among their children than comparison parents. Children with isolated OFC were more likely to receive lower grades and miss more school days than unaffected children. Because of the low response rate, results should be interpreted cautiously. CONCLUSION: Children with isolated OFC may have poorer academic outcomes during elementary school than their unaffected peers. Future studies are needed to confirm these results and determine whether these differences persist in later grades.

OBJECTIVES: Using geographic information systems (GIS), we examined travel time and distance to access hospital care for infants with spina bifida (SB). METHODS: This study was a statewide, population-based analysis of Florida-born children with SB, 1998-2007, identified by the Florida Birth Defects Registry and linked to hospitalizations. We geocoded maternal residence at delivery and identified hospital locations for infants (<1 year). Using 2007 Florida Department of Transportation road data, we calculated one-way mean travel time and distance to access hospital care. We used Poisson regression to examine selected factors associated with travel time and distance [≤30 vs. >30 min/miles (reference)], including presence of hydrocephalus and SB type [isolated (no other major birth defect) versus non-isolated SB]. RESULTS: For 612 infants, one-way mean (median) travel time was 45.1 (25.9) min. Infants with both non-isolated SB and hydrocephalus traveled longest to access hospitals (mean 60.8 min/48.5 miles; median 34.2 min/26.9 miles). In adjusted results, infants with non-isolated SB and whose mothers had a rural residence were less likely to travel ≤30 min to hospitals. Infants born to mothers in minority racial/ethnic groups were more likely to travel ≤30 min. CONCLUSIONS: Birth defects registry data and GIS-based methods can be used to evaluate geographic accessibility to hospital care for infants with birth defects. Results can help to identify geographic barriers to accessing hospital care, such as travel time and distance, and inform opportunities to improve access to care for infants with SB or other special needs.

BACKGROUND: Nonresponse bias assessment is an important and underutilized tool in survey research to assess potential bias due to incomplete participation. This study illustrates a nonresponse bias sensitivity assessment using a survey on perceived barriers to care for children with orofacial clefts in North Carolina. METHODS: Children born in North Carolina between 2001 and 2004 with an orofacial cleft were eligible for inclusion. Vital statistics data, including maternal and child characteristics, were available on all eligible subjects. Missing 'responses' from nonparticipants were imputed using assumptions based on the distribution of responses, survey method (mail or phone), and participant maternal demographics. RESULTS: Overall, 245 of 475 subjects (51.6%) responded to either a mail or phone survey. Cost as a barrier to care was reported by 25.0% of participants. When stratified by survey type, 28.3% of mail respondents and 17.2% of phone respondents reported cost as a barrier. Under various assumptions, the bias-adjusted estimated prevalence of cost as barrier to care ranged from 16.1% to 30.0%. Maternal age, education, race, and marital status at time of birth were not associated with subjects reporting cost as a barrier. CONCLUSION: As survey response rates continue to decline, the importance of assessing the potential impact of nonresponse bias has become more critical. Birth defects research is particularly conducive to nonresponse bias analysis, especially when birth defect registries and birth certificate records are used. Future birth defect studies which use population-based surveillance data and have incomplete participation could benefit from this type of nonresponse bias assessment.

BACKGROUND: Little is known about population-based maternal, child, and system characteristics associated with high hospital resource use for children with orofacial clefts (OFC) in the US. METHODS: This was a statewide, population-based, retrospective observational study of children with OFC born between 1998 and 2006, identified by the Florida Birth Defects Registry whose records were linked with longitudinal hospital discharge records. We stratified the descriptive results by cleft type [cleft lip with cleft palate, cleft lip, and cleft palate] and by isolated versus nonisolated OFC (accompanied by other coded major birth defects). We used Poisson regression to analyze associations between selected characteristics and high hospital resource use (≥90(th) percentile of estimated hospitalized days and inpatient costs) for birth, postbirth, and total hospitalizations initiated before age 2 years. RESULTS: Our analysis included 2,129 children with OFC. Infants who were born low birth weight (<2500 grams) were significantly more likely to have high birth hospitalization costs for CLP (adjusted prevalence ratio: 1.6 [95% confidence interval: 1.0-2.7]), CL (adjusted prevalence ratio: 3.0 [95% confidence interval: 1.1-8.1]), and CP (adjusted prevalence ratio: 2.3 [95% confidence interval: 1.3-4.0]). Presence of multiple birth defects was significantly associated with a three- to eleven-fold and a three- to nine-fold increase in the prevalence of high costs and number of hospitalized days, respectively; at birth, postbirth before age 2 years and overall hospitalizations. CONCLUSION: Children with cleft palate had the greatest hospital resources use. Additionally, the presence of multiple birth defects contributed to greater inpatient days and costs for children with OFC.

The National Birth Defects Prevention Network (NBDPN) published the first Congenital Malformations Surveillance Report in 1997 and has annually released a report since 2000 that contains state-specific population-based data on major birth defects and a directory describing data collection information for population-based birth defects surveillance programs in the United States. The birth defects in these reports have included conditions affecting major organs of the central nervous, eye, ear, cardiovascular, orofacial, gastrointestinal, genitourinary, and musculoskeletal systems, as well as other disorders, including trisomies and amniotic band sequence. | In 2014, the NBDPN released an updated list of major birth defects as part of its national standards development for birth defects surveillance. The criteria used to guide deliberations for inclusion on the reportable list were: (1) public health importance; (2) accuracy of diagnosis; (3) amenable to prevention/intervention; (4) state of knowledge; (5) structural malformations, diagnosed within the first year of life; and (6) ability to separate into syndromic/nonsyndromic. For example, the NBDPN list now includes all 12 critical congenital heart defects (CCHDs) that are primary and secondary targets of pulse oximetry screening as a result of the addition of CCHD to the U.S. Recommended Universal Screening Panel for newborns (Mahle et al., 2012). Other noncardiac conditions that were added include clubfoot, cloacal exstrophy, craniosynostosis, deletion 22q11.2, holoprosencephaly, small intestinal atresia/stenosis, and Turner syndrome. These additions were balanced with the removal of several conditions, including: amniotic bands, aniridia, congenital hip dislocation, epispadias, fetus or newborn affected by maternal alcohol use, Hirschsprung disease (congenital megacolon), hydrocephalus, microcephalus, patent ductus arterious, and pyloric stenosis. Additional modifications to the list resulted in the regrouping of some conditions. Upper and lower limb deficiencies were collapsed into all limb deficiencies, while cleft lip with or without cleft palate was separated into cleft lip alone and cleft lip with cleft palate. Finally, obstructive genitourinary defect was limited to just the reporting of congenital posterior urethral valves. Table 1 presents the new reported list of birth defects and their diagnostic codes (International Classification of Diseases, 9th Revision, Clinical Modification [ICD-9-CM]; and Centers for Disease Control and Prevention/British Pediatric Association Classification of Diseases [CDC/BPA]).

In this editorial, we define health services research (HSR) and its relevance and importance to birth defects surveillance and research. We briefly discuss key HSR concepts, several types of HSR data sources, and the linkage of these data for birth defects research. We also examine some challenges in data linkages and conclude by identifying research gaps in HSR for children with birth defects and their families. | Health services research is multidisciplinary and broad in scope, examining how financing systems, organization structures and processes, social factors, health technologies and personal behaviors affect access to care, cost and quality of care, health and well-being (AHRQ, 2012). The leveraging of birth defects surveillance data for HSR has been noted as a critical strategy to further the public health research priorities for birth defects, including congenital heart defects (Oster et al., 2013a), craniosynostosis (Rasmussen et al., 2008a), Down syndrome (Rasmussen et al., 2008b) and orofacial clefts (Yazdy et al., 2007).

BACKGROUND: Little is known about the barriers faced by families of children with birth defects in obtaining healthcare. We examined reported perceived barriers to care and satisfaction with care among mothers of children with orofacial clefts. METHODS: In 2006, a validated barriers to care mail/phone survey was administered in North Carolina to all resident mothers of children with orofacial clefts born between 2001 and 2004. Potential participants were identified using the North Carolina Birth Defects Monitoring Program, an active, state-wide, population-based birth defects registry. Five barriers to care subscales were examined: pragmatics, skills, marginalization, expectations, and knowledge/beliefs. Descriptive and bivariate analyses were conducted using chi-square and Fisher's exact tests. Results were stratified by cleft type and presence of other birth defects. RESULTS: Of 475 eligible participants, 51.6% (n = 245) responded. The six most commonly reported perceived barriers to care were all part of the pragmatics subscale: having to take time off work (45.3%); long waits in the waiting rooms (37.6%); taking care of household responsibilities (29.7%); meeting other family members' needs (29.5%); waiting too many days for appointments (27.0%); and cost (25.0%). Most respondents (72.3%, 175/242) felt "very satisfied" with their child's cleft care. CONCLUSION: Although most participants reported being satisfied with their child's care, many perceived barriers to care were identified. Due to the limited understanding and paucity of research on barriers to care for children with birth defects, including orofacial clefts, additional research on barriers to care and factors associated with them are needed. .