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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., (© 2023. This is a U.S. Government work and not under copyright protection in the US; foreign copyright protection may apply.)

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., (© 2022. This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply.)

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.

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., (© 2022. The Author(s).)

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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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., (© 2021. This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply.)

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.

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., (© 2021 The Author(s).)

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., (Published 2019. This article is a U.S. Government work and is in the public domain in the USA. Health Economics published by John Wiley & Sons Ltd.)

We estimated the impact on the US export economy of an illustrative infectious disease outbreak scenario in Southeast Asia that has 3 stages starting in 1 country and, if uncontained, spreads to 9 countries. We used 2014-2016 West Africa Ebola epidemic-related World Bank estimates of 3.3% and 16.1% reductions in gross domestic product (GDP). We also used US Department of Commerce job data to calculate export-related jobs at risk to any outbreak-related disruption in US exports. Assuming a direct correlation between GDP reductions and reduced demand for US exports, we estimated that the illustrative outbreak would cost from $16 million to $27 million (1 country) to $10 million to $18 billion (9 countries) and place 1,500 to almost 1.4 million export-related US jobs at risk. Our analysis illustrates how global health security is enhanced, and the US economy is protected, when public health threats are rapidly detected and contained at their source.

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.

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, 10 th 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. Birth Defects Research (Part A) 106:905-914, 2016. © 2016 Wiley Periodicals, Inc., (© 2016 Wiley Periodicals, Inc.)

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., Competing Interests: The authors report no conflict of interest concerning the materials or methods used in this study or the findings specified in this paper. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. The authors have no financial relationships relevant to this article to disclose.

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. Birth Defects Research (Part A) 103:603-609, 2015. © 2015 Wiley Periodicals, Inc., (© 2015 Wiley Periodicals, 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.

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 (≥90th 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., (© 2015 Wiley Periodicals, Inc.)

Background: Congenital heart defects (CHDs) occur in approximately 8 per 1000 live births. Improvements in detection and treatment have increased survival. Few national estimates of the healthcare costs for infants, children and adolescents with CHDs are available., Methods: We estimated hospital costs for hospitalizations using pediatric (0-20 years) hospital discharge data from the 2009 Healthcare Cost and Utilization Project Kids' Inpatient Database (KID) for hospitalizations with CHD diagnoses. Estimates were up-weighted to be nationally representative. Mean costs were compared by demographic factors and presence of critical CHDs (CCHDs)., Results: Up-weighting of the KID generated an estimated 4,461,615 pediatric hospitalizations nationwide, excluding normal newborn births. The 163,980 (3.7%) pediatric hospitalizations with CHDs accounted for approximately $5.6 billion in hospital costs, representing 15.1% of costs for all pediatric hospitalizations in 2009. Approximately 17% of CHD hospitalizations had a CCHD, but it varied by age: approximately 14% of hospitalizations of infants, 30% of hospitalizations of patients aged 1 to 10 years, and 25% of hospitalizations of patients aged 11 to 20 years. Mean costs of CHD hospitalizations were higher in infancy ($36,601) than at older ages and were higher for hospitalizations with a CCHD diagnosis ($52,899). Hospitalizations with CCHDs accounted for 26.7% of all costs for CHD hospitalizations, with hypoplastic left heart syndrome, coarctation of the aorta, and tetralogy of Fallot having the highest total costs., Conclusion: Hospitalizations for children with CHDs have disproportionately high hospital costs compared with other pediatric hospitalizations, and the 17% of hospitalizations with CCHD diagnoses accounted for 27% of CHD hospital costs., (© 2014 Wiley Periodicals, Inc.)

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., (© 2014 Wiley Periodicals, Inc.)

© 2014 The Authors Birth Defects Research Part A: Clinical and Molecular Teratology Published by Wiley Periodicals, Inc., (© 2014 Wiley Periodicals, Inc.)

Background: Our objective was to examine differences in hospital resource usage for children with Down syndrome by age and the presence of other birth defects, particularly severe and nonsevere congenital heart defects (CHDs)., Methods: This was a retrospective, population-based, statewide study of children with Down syndrome born 1998 to 2007, identified by the Florida Birth Defects Registry (FBDR) and linked to hospital discharge records for 1 to 10 years after birth. To evaluate hospital resource usage, descriptive statistics on number of hospitalized days and hospital costs were calculated. Results were stratified by isolated Down syndrome (no other coded major birth defect); presence of severe and nonsevere CHDs; and presence of major FBDR-eligible birth defects without CHDs., Results: For 2552 children with Down syndrome, there were 6856 inpatient admissions, of which 68.9% occurred during the first year of life (infancy). Of the 2552 children, 31.7% (n = 808) had isolated Down syndrome, 24.0% (n = 612) had severe CHDs, 36.3% (n = 927) had nonsevere CHDs, and 8.0% (n = 205) had a major FBDR-eligible birth defect in the absence of CHD. Infants in all three nonisolated DS groups had significantly higher hospital costs compared with those with isolated Down syndrome. From infancy through age 4, children with severe CHDs had the highest inpatient costs compared with children in the other sub-groups., Conclusion: Results support findings that for children with Down syndrome the presence of other anomalies influences hospital use and costs, and children with severe CHDs have greater hospital resource usage than children with other CHDs or major birth defects without CHDs., (© 2014 Wiley Periodicals, Inc.)

Objectives: We examined the association between health insurance and survival of infants with congenital heart defects (CHDs), and whether medical insurance type contributed to racial/ethnic disparities in survival., Methods: We conducted a population-based, retrospective study on a cohort of Florida resident infants born with CHDs between 1998 and 2007. We estimated neonatal, post-neonatal, and infant survival probabilities and adjusted hazard ratios (AHRs) for individual characteristics., Results: Uninsured infants with critical CHDs had 3 times the mortality risk (AHR = 3.0; 95% confidence interval = 1.3, 6.9) than that in privately insured infants. Publicly insured infants had a 30% reduced mortality risk than that of privately insured infants during the neonatal period, but had a 30% increased risk in the post-neonatal period. Adjusting for insurance type reduced the Black-White disparity in mortality risk by 50%., Conclusions: Racial/ethnic disparities in survival were attenuated significantly, but not eliminated, by adjusting for payer status.

Objectives: To explore women's knowledge, attitudes, and beliefs about adverse outcomes associated with smoking during pregnancy and which outcomes might motivate cessation; to explore reactions to graphic warnings depicting 2 adverse outcomes., Methods: Twelve focus groups were conducted with women of childbearing age who were current smokers., Results: Participants had low to moderate awareness of many outcomes and believed it was acceptable to smoke in the first trimester before knowledge of pregnancy. Perceived susceptibility to outcomes was low. Motivators included risk-focused information, especially serious risks to the baby (eg, stillbirth, SIDS). Graphic warnings produced strong reactions, especially the warning with a real photo., Conclusions: Despite barriers to reducing rates of smoking during pregnancy, educational information and photos depicting babies' risks could motivate women to quit.

Importance: Critical congenital heart disease (CCHD) was added to the Recommended Uniform Screening Panel for Newborns in the United States in 2011. Many states have recently adopted or are considering requirements for universal CCHD screening through pulse oximetry in birth hospitals. Limited previous research is directly applicable to the question of how many US infants with CCHD might be identified through screening., Objectives: To estimate the proportion of US infants with late detection of CCHD (>3 days after birth) based on existing clinical practice and to investigate factors associated with late detection., Design, Setting, and Participants: Descriptive and multivariable analysis. Data were obtained from a multisite population-based study of birth defects in the United States, the National Birth Defects Prevention Study (NBDPS). We included all live-born infants with estimated dates of delivery from January 1, 1998, through December 31, 2007, and nonsyndromic, clinically verified CCHD conditions potentially detectable through screening via pulse oximetry., Main Outcomes and Measures: The main outcome measure was the proportion of infants with late detection of CCHD through echocardiography or at autopsy under the assumption that universal screening at birth hospitals might reduce the number of such late diagnoses. Secondary outcome measures included prevalence ratios for associations between selected demographic and clinical factors and late detection of CCHD., Results: Of 3746 live-born infants with nonsyndromic CCHD, late detection occurred in 1106 (29.5% [95% CI, 28.1%-31.0%]), including 6 (0.2%) (0.1%-0.4%) first receiving a diagnosis at autopsy more than 3 days after birth. Late detection varied by CCHD type from 9 of 120 infants (7.5% [95% CI, 3.5%-13.8%]) with pulmonary atresia to 497 of 801 (62.0% [58.7%-65.4%]) with coarctation of the aorta. In multivariable analysis, late detection varied significantly by CCHD type and study site, and infants with extracardiac defects were significantly less likely to have late detection of CCHD (adjusted prevalence ratio, 0.58 [95% CI, 0.49-0.69])., Conclusions and Relevance: We estimate that 29.5% of live-born infants with nonsyndromic CCHD in the NBDPS received a diagnosis more than 3 days after birth and therefore might have benefited from routine CCHD screening at birth hospitals. The number of infants in whom CCHD was detected through screening likely varies by several factors, including CCHD type. Additional population-based studies of screening in practice are needed.

Objective: Critical congenital heart disease (CCHD) was recently added to the U.S. Recommended Uniform Screening Panel for newborns. This evaluation aimed to estimate screening time and hospital cost per newborn screened for CCHD using pulse oximetry as part of a public health economic assessment of CCHD screening., Methods: A cost survey and time and motion study were conducted in well-newborn and special/intensive care nurseries in a random sample of seven birthing hospitals in New Jersey, where the state legislature mandated CCHD screening in 2011. The sample was stratified by hospital facility level, hospital birth census, and geographic location. At the time of the evaluation, all hospitals had conducted CCHD screening for at least four months., Results: Mean screening time per newborn was 9.1 (standard deviation = 3.4) minutes. Hospitals' total mean estimated cost per newborn screened was $14.19 (in 2011 U.S. dollars), consisting of $7.36 in labor costs and $6.83 in equipment and supply costs., Conclusions: This federal agency-state health department collaborative assessment is the first state-level analysis of time and hospital costs for CCHD screening using pulse oximetry conducted in the U.S. Hospitals' cost per newborn screened for CCHD with pulse oximetry is comparable with cost estimates of existing newborn screening tests. Hospitals' equipment costs varied substantially based on the pulse oximetry technology employed, with lower costs among hospitals that used reusable screening sensors. In combination with estimates of screening accuracy, effectiveness, and avoided costs, information from this evaluation suggests that CCHD screening is cost-effective.

Background: Children with birth defects may face significant geographic barriers accessing medical care and specialized services. Using a Geographic Information Systems-based approach, one-way travel time and distance to access medical care for children born with spina bifida was estimated., Methods: Using 2007 road information from the Florida Department of Transportation, we built a topological network of Florida roads. Live-born Florida infants with spina bifida during 1998 to 2007 were identified by the Florida Birth Defects Registry and linked to hospital discharge records. Maternal residence at delivery and hospitalization locations were identified during the first year of life., Results: Of 668 infants with spina bifida, 8.1% (n = 54) could not be linked to inpatient data, resulting in 614 infants. Of those 614 infants, 99.7% (n = 612) of the maternal residential addresses at delivery were successfully geocoded. Infants with spina bifida living in rural areas in Florida experienced travel times almost twice as high compared with those living in urban areas. When aggregated at county levels, one-way network travel times exhibited statistically significant spatial autocorrelation, indicating that families living in some clusters of counties experienced substantially greater travel times compared with families living in other areas of Florida., Conclusion: This analysis demonstrates the usefulness of linking birth defects registry and hospital discharge data to examine geographic differences in access to medical care. Geographic Information Systems methods are important in evaluating accessibility and geographic barriers to care and could be used among children with special health care needs, including children with birth defects., (Copyright © 2013 Wiley Periodicals, Inc.)

Background: Information on travel distance and time to care for children with birth defects is lacking. We examined factors associated with travel distance and time to cleft care among children with orofacial clefts., Methods: In 2006, a mail/phone survey was administered in English and Spanish to all resident mothers of children with orofacial clefts born 2001 to 2004 and identified by the North Carolina birth defects registry. We analyzed one-way travel distance and time and the extent to which taking a child to care was a problem. We used multivariable logistic regression to examine the association between selected sociodemographic factors and travel distance (≤60 miles and >60 miles) and time (≤60 min and >60 min) to cleft care., Results: Of 475 eligible participants, 51.6% (n = 245) responded. Of the respondents, 97.1% (n = 238) were the child's biological mother. Approximately 83% (n = 204) of respondents were non-Hispanic White; 33.3% (n = 81) were college educated; and 50.0% (n = 115) had private health insurance. One-way mean and median travel distances were 80 and 50 miles, respectively (range, 0-1058 miles). One-way mean and median travel times were 92 and 60 min, respectively (range, 5 min to 8 hr). After adjusting for selected sociodemographics, travel distance varied significantly by maternal education, child's age, and cleft type. Travel time varied significantly by child's age. Approximately 67% (n = 162) reported taking their child to receive care was not a problem., Conclusion: Approximately 48% of respondents traveled > 1 hr to receive cleft care. Increasing access to care may be important for improving health outcomes among this population., (Copyright © 2013 Wiley Periodicals, Inc.)

Background: Critical congenital heart disease (CCHD) was recently added to the U.S. Recommended Uniform Screening Panel for newborns. States considering screening requirements may want more information about the potential impact of screening. This study examined potentially avoidable mortality among infants with late detected CCHD and assessed whether late detection was associated with increased hospital resource use during infancy., Methods: This was a state-wide, population-based, observational study of infants with CCHD (n = 3603) born 1998 to 2007 identified by the Florida Birth Defects Registry. We examined 12 CCHD conditions that are targets of newborn screening. Late detection was defined as CCHD diagnosis after the birth hospitalization. Deaths potentially avoidable through screening were defined as those that occurred outside a hospital following birth hospitalization discharge and those that occurred within 3 days of an emergency readmission., Results: For 23% (n = 825) of infants, CCHD was not detected during the birth hospitalization. Death occurred among 20% (n = 568/2,778) of infants with timely detected CCHD and 8% (n = 66/825) of infants with late detected CCHD, unadjusted for clinical characteristics. Potentially preventable deaths occurred in 1.8% (n = 15/825) of infants with late detected CCHD (0.4% of all infants with CCHD). In multivariable models adjusted for selected characteristics, late CCHD detection was significantly associated with 52% more admissions, 18% more hospitalized days, and 35% higher inpatient costs during infancy., Conclusion: Increased CCHD detection at birth hospitals through screening may lead to decreased hospital costs and avoid some deaths during infancy. Additional studies conducted after screening implementation are needed to confirm these findings., (Copyright © 2013 Wiley Periodicals, Inc.)

Objectives: Clinical evidence indicates newborn critical congenital heart disease (CCHD) screening through pulse oximetry is lifesaving. In 2011, CCHD was added to the US Recommended Uniform Screening Panel for newborns. Several states have implemented or are considering screening mandates. This study aimed to estimate the cost-effectiveness of routine screening among US newborns unsuspected of having CCHD., Methods: We developed a cohort model with a time horizon of infancy to estimate the inpatient medical costs and health benefits of CCHD screening. Model inputs were derived from new estimates of hospital screening costs and inpatient care for infants with late-detected CCHD, defined as no diagnosis at the birth hospital. We estimated the number of newborns with CCHD detected at birth hospitals and life-years saved with routine screening compared with no screening., Results: Screening was estimated to incur an additional cost of $6.28 per newborn, with incremental costs of $20 862 per newborn with CCHD detected at birth hospitals and $40 385 per life-year gained (2011 US dollars). We estimated 1189 more newborns with CCHD would be identified at birth hospitals and 20 infant deaths averted annually with screening. Another 1975 false-positive results not associated with CCHD were estimated to occur, although these results had a minimal impact on total estimated costs., Conclusions: This study provides the first US cost-effectiveness analysis of CCHD screening in the United States could be reasonably cost-effective. We anticipate data from states that have recently approved or initiated CCHD screening will become available over the next few years to refine these projections.

Objectives: Critical congenital heart disease (CCHD) was recently added to the US Recommended Uniform Screening Panel for newborns. This study assessed whether maternal/household and infant characteristics were associated with late CCHD detection., Methods: This was a statewide, population-based, retrospective, observational study of infants with CCHD born between 1998 and 2007 identified by using the Florida Birth Defects Registry. We examined 12 CCHD conditions that are primary and secondary targets of newborn CCHD screening using pulse oximetry. We used Poisson regression models to analyze associations between selected characteristics (eg, CCHD type, birth hospital nursery level [highest level available in the hospital]) and late CCHD detection (defined as diagnosis after the birth hospitalization)., Results: Of 3603 infants with CCHD and linked hospitalizations, CCHD was not detected during the birth hospitalization for 22.9% (n = 825) of infants. The likelihood of late detection varied by CCHD condition. Infants born in a birth hospital with a level I nursery only (adjusted prevalence ratio: 1.9 [95% confidence interval: 1.6-2.2]) or level II nursery (adjusted prevalence ratio: 1.5 [95% confidence interval: 1.3-1.7]) were significantly more likely to have late-detected CCHD compared with infants born in a birth hospital with a level III (highest) nursery., Conclusions: After controlling for the selected characteristics, hospital nursery level seems to have an independent association with late CCHD detection. Thus, perhaps universal newborn screening for CCHD could be particularly beneficial in level I and II nurseries and may reduce differences in the frequency of late diagnosis between birth hospital facilities.

Background: Craniofacial microsomia (CFM) is a congenital condition characterized by microtia and mandibular underdevelopment. Healthcare databases and birth defects surveillance programs could be used to improve knowledge of CFM. However, no specific International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) code exists for this condition, which makes standardized data collection challenging. Our aim was to evaluate the validity of existing ICD-9-CM codes to identify individuals with CFM., Methods: Study sample eligibility criteria were developed by an expert panel and matched to 11 ICD-9-CM codes. We queried hospital discharge data from two craniofacial centers and identified a total of 12,254 individuals who had ≥1 potentially CFM-related code(s). We reviewed all (n = 799) medical records identified at the University of North Carolina (UNC) and 500 randomly selected records at Seattle Children's Hospital (SCH). Individuals were classified as a CFM case or non-case., Results: Thirty-two individuals (6%) at SCH and 93 (12%) at UNC met the CFM eligibility criteria. At both centers, 59% of cases and 95% of non-cases had only one code assigned. At both centers, the most frequent codes were 744.23 (microtia), 754.0 and 756.0 (nonspecific codes), and the code 744.23 had a positive predictive value (PPV) >80% and sensitivity >70%. The code 754.0 had a sensitivity of 3% (PPV <1%) at SCH and 36% (PPV = 5%) at UNC, whereas 756.0 had a sensitivity of 38% (PPV = 5%) at SCH and 18% (PPV = 26%) at UNC., Conclusions: These findings suggest the need for a specific CFM code to facilitate CFM surveillance and research., (Copyright © 2012 Wiley Periodicals, Inc.)

Background: Health care use and costs for children with spina bifida (SB) are significantly greater than those of unaffected children. Little is known about hospital use and costs across health insurance payer types. We examined hospitalizations and associated costs by sociodemographic characteristics and payer type during the first year of life among children with SB. We also examined changes in health insurance payer status., Methods: This study was a retrospective, statewide population-based analysis of infants with SB without anencephaly born in Florida during 1998-2007. Infants were identified by the Florida Birth Defects Registry and linked to hospital discharge records. Descriptive statistics on number of hospitalizations, length of stay, and estimated hospital costs per hospitalization and per infant were calculated during the first year of life. Results were stratified by selected sociodemographic variables and health insurance payer type., Results: Among 615 infants with SB, mean and median numbers of hospitalizations per infant were 2.4 and 2.0, respectively. Mean and median total days of hospitalization per infant were 25.2 and 14.0 days, respectively. Approximately 18% of infants were hospitalized more than three times. Among infants with multiple hospitalizations, 16.7% had a mix of public and private health insurance payers. Almost 60% of hospitalizations for infants were paid by public payer sources. Mean and median estimated hospital costs per infant were $39,059 and $21,937, respectively., Conclusions: Results suggest a small percentage of infants with SB have multiple hospitalizations with high costs. Further analysis on factors associated with length of stay, hospitalizations, and costs is warranted., (Copyright © 2012 Wiley Periodicals, Inc.)

Objective: To examine maternal perceptions of barriers to care of children with orofacial clefts (OFC) in a population-based survey that solicited open-ended qualitative responses., Design and Setting: In 2006, a combination mail/phone survey was sent to all mothers of children with OFC. The questionnaire included 76 items. A final open-ended question was included for additional information about cleft-related care. The analysis included responses to the open-ended question and sociodemographic characteristics of the respondents. Qualitative responses were transcribed and entered into a qualitative software package for analysis, and common themes were elucidated., Participants/patients: The North Carolina Birth Defects Monitoring Program was used to identify all resident infants born with OFC from 2001 to 2004. Of 478 eligible mothers, 52.9% (n  =  248) responded to the survey, and 39.5% (n  =  98) responded to the final open-ended question., Main Outcome Measures: Percentage reporting problems accessing care, frequency of positive and negative comments, and indicators of financial, personal, and structural barriers to care., Results: Of the 98 respondents, the majority (n  =  95, 96.99%) were the biological mother. Almost 40% of mothers indicated that accessing primary craniofacial care was a problem. Of those citing perceived barriers to care, the major issues cited were financial, structural, and personal barriers., Conclusions: Collaborative efforts between craniofacial centers and teams, health care systems, and birth defects registries are warranted to reduce perceived barriers to care among families of children with OFC. Further exploration of the themes and factors associated with barriers to care and services is needed.

Background: National data on health care use among children with special needs are limited and do not address children with spina bifida (SB). One recent study examined health care costs during 2003 among privately insured individuals with SB. Our objective was to compare health care use and expenditures among publicly insured children with SB to children without a major birth defect and among children with SB with and without hydrocephalus., Methods: Data from the North Carolina Birth Defects Monitoring Program and Medicaid were linked to identify continuously enrolled children with SB (case children) and children without a major birth defect (control children) born from 1995 to 2002. Medicaid expenditures per child for medical, inpatient, outpatient, dental, well-child care, developmental/behavioral services, and home health for those aged 0 to 4 years old were calculated for case and control children and for case children with and without hydrocephalus., Results: Of 373 case children who survived infancy, 205 (55%) were enrolled in Medicaid. Expenditures were assessed for 144 case and 5674 control children aged 0 to 4 years old continuously enrolled in Medicaid. During infancy, mean expenditure was $33,135 per child with SB and $3900 per unaffected child. The biggest relative expenditures were for developmental/behavioral services (82 times higher for case than control child [$1401 vs. $17]) and home health services (20 times higher [$821 vs. $41]). Average expenditure for an infant with SB and hydrocephalus was 2.6 times higher than an infant with SB without hydrocephalus ($40,502 vs. $15,699)., Conclusions: Expenditure comparisons by SB subtype are important for targeting health care resources., (Copyright © 2011 Wiley Periodicals, Inc.)

Cleft care is generally characterized by staged, carefully timed surgeries and long-term, team-centered follow-up. Acute and chronic crises can wreak havoc on the comprehensive team care required by children with craniofacial anomalies. In addition, there is evidence that crises, including natural disasters and chronic disruptions, such as political turmoil and poverty, can lead to an increased incidence of craniofacial anomalies. The purpose of this article is to delineate the impact of acute and chronic crises on cleft care. Hurricane Katrina in New Orleans, Louisiana, in 2005, resulted in an acute crisis that temporarily disrupted the infrastructure necessary to deliver cleft care; chronic turmoil in the West Bank/Palestine has resulted in an absence of infrastructure to deliver cleft care. Through these central examples, this article will illustrate-through the prism of cleft care-the need for (1) disaster preparedness for acute crises, (2) changing needs following acute crises that may lead to persistent chronic disruption, and (3) baseline and long-term monitoring of population changes after a disaster has disrupted a health care delivery system.

Objective: To examine social issues in the conduct of cleft and craniofacial care through relief programs in disrupted crisis contexts., Method: Social, health policy, and ethical analyses., Results: At best, craniofacial team care is multidisciplinary, coordinated, and sustained, requiring a long-term relationship between team members, patients, and families. Disasters and societal turmoil interrupt such relationships, causing craniofacial care to become a secondary concern. Providing craniofacial team care in a crisis setting requires rebuilding disrupted coordination and communication. Crisis relief care involves a complex set of expectations and responsibilities and raises issues such as (1) quality assurance, infection control, appropriate standards of care, and follow-up care/continuity; (2) equity of access to services and clinical ethics in the context of war and/or deprivation; (3) training of visitors in the local nation or site; (4) disciplinary composition of teams, interprofessional communication/rivalry, and credentials of clinicians; (5) ownership of the site and local visitor relations; (6) fundraising and marketing strategies; and (7) ethical issues in the doctor-patient relationship., Conclusions: Specific ethical standards for international cleft and craniofacial care delivery also apply to domestic and global crisis relief contexts. Guidance on issues related to professional experience, informed consent, and continuity of care will help care providers address social and ethical issues raised in crisis relief programs. This paper proposes that the Position Paper of the American Cleft Palate-Craniofacial Association (ACPA) on International Treatment Programs should be used as a template to develop and disseminate a set of standards that apply to crisis relief.

Since the 2000 Surgeon General's Report on Oral Health (SGROH), substantial areas of inquiry relative to individuals, especially children and youth, with orofacial clefts and other craniofacial conditions have emerged. These areas include access to and cost of care, stigmatization and quality of life, and social and ethical issues around prenatal diagnosis. This update on the 2000 SGROH examines what we have learned about the cost and ability to access cleft and craniofacial care, prenatal diagnosis, and how quality of life is impacted by these conditions and the burden of care. The development of new research tools to assess quality of life since 2000 will permit further study of the impact of oral and craniofacial conditions on children and families and the effect of treatment on quality of life. Despite a better understanding of the higher use of services and increased costs of care for families of children with craniofacial conditions, major gaps in research must be addressed to assist with program planning and policy development for these groups of children and their families. Further work is also needed to assess the cost-effectiveness of craniofacial team care and to better understand family experience with accessing needed care. Finally, prenatal detection and diagnosis of clefts and craniofacial conditions have advanced dramatically, and the roles of craniofacial professionals and teams have been affected. New understandings of prenatal diagnosis and genomic sciences are redefining genetic counseling, therapy, and future preventive initiatives.

Objective: To examine the timeliness of primary cleft surgery, mean age at which surgery occurred, and factors associated with timely cleft surgery among children with orofacial clefts (OFCs)., Design: Retrospective study of children with OFC using North Carolina vital statistics, birth defects registry, and Medicaid files., Participants/patients: Medicaid-enrolled North Carolina resident children with OFC born from 1995 to 2002., Main Outcome Measures: Proportion of children who underwent primary cleft surgery within 18 months of life, mean age when surgery occurred, and factors associated with timely surgery., Results: 406 children with OFC were continuously enrolled in Medicaid during the first 2 years of life. Overall, 78.1% of children had surgery within 18 months. About 90% of children with cleft lip (CL), 58.0% of children with cleft palate (CP), and 89.6% of children with cleft lip and palate (CLP) received timely cleft surgery; the mean age at which surgery occurred was 5 months. Children whose mothers received maternity care coordination, received prenatal care at a local health department, or lived in the southeastern or northeastern region of the state were more likely to receive timely cleft surgery., Conclusion: Most children with OFC in North Carolina born during this time period received primary cleft surgery within 18 months of life, but this varied by maternal demographics and other factors.

Background: National data that examine health costs among children with special needs are limited and do not address children with orofacial clefts (OFC). This study examines Medicaid expenditures among children with and without OFC., Methods: North Carolina vital statistics, health services, birth defects registry, and Medicaid enrollment and paid claims were linked to identify resident children born 1995-2002 with and without OFC who were continuously enrolled in Medicaid. Outcome measures included average cost per child for medical, inpatient, outpatient, dental, well-child care, mental health, and home health. Average expenditures per child were also determined and were examined by the child's phenotypic characteristics including type of cleft and whether the defect was isolated or non-isolated. Expenditure ratios were calculated to compare cases and controls and differences in expenditures among cases by cleft type and by isolated/non-isolated occurrence., Results: During infancy, average mental health expenditure per child with OFC was 37.2 times higher than for a child without OFC. Average home health expenditure per case was 45.0 times higher than for a control. Mean expenditure per child with OFC was $22,642 compared to $3,900 for an unaffected child. Mean expenditure for a child with cleft palate and child with cleft lip with cleft palate were about three times more than a child with cleft lip alone. Mean expenditure per child with non-isolated OFC also was substantially higher than the expenditure for a child with isolated OFC., Conclusions: Children with OFC have significantly higher health-related Medicaid expenditures than unaffected children. These findings are important for targeting care coordination and early intervention and for program planning and policy development related to special needs children.

Objective: North Carolina has several programs that identify high-risk women and children for needed services, including the Child Service Coordination Program (CSCP). This study determines CSCP referral rates among infants with orofacial clefts (OFCs) and predictors of CSCP referral. We hypothesized receiving Medicaid and maternity care coordination (MCC) services increases the likelihood of CSCP referral., Design and Setting: For births between 1999 and 2002, data were matched from North Carolina Vital Statistics, Health Services Information System (MCC and CSCP data), and North Carolina Birth Defects Monitoring Program. Multivariate analysis was used to determine crude and adjusted odds ratios for sociodemographic variables to predict CSCP referral., Participants: A total of 644 mothers of live-born infants with OFCs in North Carolina were identified., Results: About 45% of infants with OFCs were referred to the CSCP. Infants of mothers who were at least 30 years of age and mothers who had more than a high school education were significantly less likely to be referred to the CSCP. Compared with infants with OFCs whose mothers did not receive Medicaid, mothers who received Medicaid were 1.9 times more likely to be referred to the CSCP, and mothers who received Medicaid and MCC services were 2.3 times more likely., Conclusions: Receipt of Medicaid and MCC services and receipt of Medicaid alone were positively associated with CSCP referral. Future studies should examine the effects of the duration of MCC services and factors related to the timeliness of CSCP referral.