Inpatient Hospitalization Costs Associated with Birth Defects Among Persons of All Ages - United States, 2013.

In the United States, major structural or genetic birth defects affect approximately 3% of live births (1) and are responsible for 20% of infant deaths (2). Birth defects can affect persons across their lifespan and are the cause of significant lifelong disabilities. CDC used the Healthcare Cost and Utilization Project (HCUP) 2013 National Inpatient Sample (NIS), a 20% stratified sample of discharges from nonfederal community hospitals, to estimate the annual cost of birth defect-associated hospitalizations in the United States, both for persons of all ages and by age group. Birth defect-associated hospitalizations had disproportionately high costs, accounting for 3.0% of all hospitalizations and 5.2% of total hospital costs. The estimated annual cost of birth defect-associated hospitalizations in the United States in 2013 was $22.9 billion. Estimates of the cost of birth defect-associated hospitalizations offer important information about the impact of birth defects among persons of all ages on the overall health care system and can be used to prioritize prevention, early detection, and care.

Cost Analysis of Following Up Incomplete Low-Risk Fetal Anatomy Ultrasounds.

OBJECTIVES: To examine the clinical utility and cost of follow-up ultrasounds performed as a result of suboptimal views at the time of initial second-trimester ultrasound in a cohort of low-risk pregnant women. METHODS: We conducted a retrospective cohort study of women at low risk for fetal structural anomalies who had second-trimester ultrasounds at 16 to less than 24 weeks of gestation from 2011 to 2013. We determined the probability of women having follow-up ultrasounds as a result of suboptimal views at the time of the initial second-trimester ultrasound, and calculated the probability of detecting an anomaly on follow-up ultrasound. These probabilities were used to estimate the national cost of our current ultrasound practice, and the cost to identify one fetal anomaly on follow-up ultrasound. RESULTS: During the study period, 1,752 women met inclusion criteria. Four fetuses (0.23% [95% CI 0.06-0.58]) were found to have anomalies at the initial ultrasound. Because of suboptimal views, 205 women (11.7%) returned for a follow-up ultrasound, and one (0.49% [95% CI 0.01-2.7]) anomaly was detected. Two women (0.11%) still had suboptimal views and returned for an additional follow-up ultrasound, with no anomalies detected. When the incidence of incomplete ultrasounds was applied to a similar low-risk national cohort, the annual cost of these follow-up scans was estimated at $85,457,160. In our cohort, the cost to detect an anomaly on follow-up ultrasound was approximately $55,000. CONCLUSIONS: The clinical yield of performing follow-up ultrasounds because of suboptimal views on low-risk second-trimester ultrasounds is low. Since so few fetal abnormalities were identified on follow-up scans, this added cost and patient burden may not be warranted.

Hospitalization charges for children with birth defects in Texas, 2001 to 2010.

BACKGROUND: State-specific information about hospitalizations of children with birth defects can improve understanding of changes in occurrence, treatment practices, and health care financing policies. This study analyzed aggregated data on hospital charges and length of stay for a large, diverse population. METHODS: We extracted hospitalization data for children diagnosed with birth defects from the Texas Hospital Inpatient Discharge Public Use Data File (2001-2010). Analyses compared total charges and length of stay for children with and without a diagnosis code of any birth defect among 45 standard categories. We also examined trends for total charges by expected payer type. RESULTS: In Texas, 431,296 hospital stays were reported for children with birth defects, with total charges of $24.8 billion. Mean hospital stay for children with birth defects was more than twice that of those without, whereas mean of hospital total charges was approximately six times greater. Pyloric stenosis accounted for the largest number of hospitalizations, followed by certain cardiac defects. Pediatric hospitalizations for birth defects increased 273.7%, compared with a 214.7% increase overall. The percentage of charges with Medicaid as expected payer (2004-2010) ranged from 56.5 to 62.0%. CONCLUSION: Charges associated with these conditions are far greater than those associated with pediatric hospitalizations for other causes, whether in the newborn period or beyond. However, these charges vary depending on specific diagnoses, expected payer source, and year of treatment.

[Analysis of a Family-centred Care Programme with Follow-up Home-visits in Neonatology - In Times of the Directive from G-BA]. / Konzeptanalyse einer stationären und ambulanten psychosozialen familienzentrierten Betreuung in der Neonatologie in Zeiten des G-BA-Beschlusses.

BACKGROUND: Marked progress in neonatology changed care of very preterm infants (VLBW) over the last decades - but also the attitude towards family-centred care (FCC). With the directive of the German Federal Joined Committee (G-BA), politicians recognize the necessity of neonatal FCC. AIM: To evaluate time and personnel costs necessary at a centre of established FCC. METHODS: Elternberatung "Frühstart" is a FCC programme for VLBW and seriously ill neonates from preganancy at risk to follow-up home-visits delivered by one interdisciplinary team. Analysis (2011-2014): 1.) Number of cases /participation in programme, 2.) resources of time, 3) and personnel, 4.) funding, 5) economic impact. RESULTS: 1.1.2011-31.12.2014: 441 cases (total cases: 2 212) participated in the programme. Participation of VLBW: mean 92% (86.4-97,2%). Costs of time are highest in neonates with congenital malformations: median 13.8 h, VLBW: median 11,2 h. Transition to home is most time intensive: median 7,3 (0-42.5) h. In average of 3.1 full-time nurses (part-time workers) are able to counsel 48 families/quarter. In severe cases funding is partly provided by health care insurances for social medical aftercare: positive applications: mean 92.7% (79.6-97.7%). CONCLUSION: Participation in the FCC programme in neonatology is high and costs of time are manageable.

Trends in the incidence of diabetes, its clinical sequelae, and associated costs in pregnancy.

BACKGROUND: Increasing diabetes prevalence affects a substantial number of pregnant women in the United States. Our aims were to evaluate health outcomes, medical costs, risks and types of complications associated with diabetes in pregnancy for mothers and newborns. METHODS: In this retrospective claims analysis, patients were identified from the Truven Health MarketScan(®) database (2004-2011 inclusive). Participants were aged 18-45 years, with ascertainable diabetes status [Yes/No], date of birth event >2005 and continuous health plan enrolment ≥21 months before and 3 months after the birth. RESULTS: In total, 839 792 pregnancies were identified, and 66 041 (7.86%) were associated with diabetes mellitus [type 1 (T1DM), 0.13%; type 2 (T2DM), 1.21%; gestational (GDM), 6.29%; and GDM progressing to T2DM (patients without prior diabetes who had a T2DM diagnosis after the birth event), 0.23%]. Relative risk (RR) of stillbirth (2.51), miscarriage (1.28) and Caesarean section (C-section) (1.77) was significantly greater with T2DM versus non-diabetes. Risk of C-section was also significantly greater for other diabetes types [RR 1.92 (T1DM); 1.37 (GDM); 1.63 (GDM progressing to T2DM)]. Risk of overall major congenital (RR ≥ 1.17), major congenital circulatory (RR ≥ 1.19) or major congenital heart (RR ≥ 1.18) complications was greater in newborns of mothers with diabetes versus without. Mothers with T2DM had significantly higher risk (RR ≥ 1.36) of anaemia, depression, hypertension, infection, migraine, or cardiac, obstetrical or respiratory complications than non-diabetes patients. Mean medical costs were higher with all diabetes types, particularly T1DM ($27 531), than non-diabetes ($14 355). CONCLUSIONS: Complications and costs of healthcare were greater with diabetes, highlighting the need to optimize diabetes management in pregnancy.

Birth defects data from population-based birth defects surveillance programs in the United States, 2007 to 2011: highlighting orofacial clefts.

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

Burden of surgically correctable disabilities among children in the Dadaab Refugee Camp.

BACKGROUND: Surgery is increasingly recognized as a means to reduce the morbidity and mortality of disabling impairments in resource-limited environments. We sought to estimate the burden of surgically correctable disabling impairments and the cost-effectiveness of their treatment among children in a large refugee camp. METHODS: This is a chart review of all patients aged 0-18 years from Dadaab Refugee Camp (Kenya) treated at a facility primarily responsible for providing pediatric surgical care in the region. Total disability-adjusted life years (DALYs) averted were calculated using life expectancy tables and established or estimated disability weights. A sensitivity analysis was performed using various life expectancy tables. Delayed averted DALYs caused by delay in care were also estimated. Inpatient costs were collected to perform a cost-effectiveness analysis. RESULTS: Between 2005 and 2011 a total of 640 procedures were performed on 341 patients. The median age at surgery was 4.6 years, and 33 % of the children treated were female. Only 13.5 % of surgeries estimated as required for common congenital surgical conditions were actually performed. The total number of DALYs averted ranged from 4,136 to 9,529 (6.4-14.8 per patient), depending on the calculation method used. Cost-effectiveness analysis resulted in values of $40-$88 per DALY. CONCLUSIONS: The burden of pediatric surgical disabling impairments in refugee camps is substantial. Surgical intervention to address this burden is both feasible and cost-effective. Such intervention can significantly decrease the burden of disability among children affected by armed conflicts.

Postnatal outcome of congenital anomalies in low resource setting.

OBJECTIVE: This study aimed to determine the postnatal outcome of congenital malformations in a tertiary care hospital of India. MATERIAL AND METHODS: This was a prospective study of all women with prenatally detected major congenital malformations. Postnatal follow-up of live born babies was carried out for 1 year. RESULTS: There were 574 cases with major congenital anomalies, 523 of which were fully followed. Only 69 women (13.6%) had the initial scan before 20 weeks of gestation. Craniospinal defects were the most common (42.7%), followed by genitourinary anomalies (28%). There was no live birth in cases such as anencephaly, iniencephaly, bilateral renal agenesis, gastroschisis, and cystic hygroma. Survival at 1 year was less than 25% in spina bifida, bilateral cystic kidneys, complex cardiac disease, and non-immune hydrops fetalis. In cases with mild hydrocephalus or unilateral and mild renal disease, the survival was over 75%. CONCLUSION: In India, the majority of congenital anomalies present late in gestation. Although fetal outcome is invariably poor for severe defects, existing legislation in the country leaves pregnancy continuation as the only option.

Which newborn infants are too expensive to treat? Camosy and rationing in intensive care.

Are there some newborn infants whose short- and long-term care costs are so great that treatment should not be provided and they should be allowed to die? Public discourse and academic debate about the ethics of newborn intensive care has often shied away from this question. There has been enough ink spilt over whether or when for the infant's sake it might be better not to provide life-saving treatment. The further question of not saving infants because of inadequate resources has seemed too difficult, too controversial, or perhaps too outrageous to even consider. However, Roman Catholic ethicist Charles Camosy has recently challenged this, arguing that costs should be a primary consideration in decision-making in neonatal intensive care. In the first part of this paper I will outline and critique Camosy's central argument, which he calls the 'social quality of life (sQOL)' model. Although there are some conceptual problems with the way the argument is presented, even those who do not share Camosy's Catholic background have good reason to accept his key point that resources should be considered in intensive care treatment decisions for all patients. In the second part of the paper, I explore the ways in which we might identify which infants are too expensive to treat. I argue that both traditional personal 'quality of life' and Camosy's 'sQOL' should factor into these decisions, and I outline two practical proposals.

[Prolonged stay in pediatric intensive care units: mortality and healthcare resource consumption]. / Ingreso prolongado en la unidad de cuidados intensivos pediátricos: mortalidad y consumo de recursos asistenciales.

OBJECTIVE: To analyze mortality and resource consumption in patients with long stays in pediatric intensive care units (PICUs). DESIGN: A retrospective, descriptive case series study. SCOPE: Medical-surgical PICU in a third level hospital. PATIENTS: Data were collected from patients with a stay of 28 days or more in PICU between 2006 and 2010. Of the 2118 patients assisted in this period, 83 (3.9%) required prolonged stay. STUDY VARIABLES: Morbidity-mortality and resource consumption among patients with prolonged stay in the PICU. RESULTS: Mortality was higher in patients with a long stay (22.9%) than in the rest of patients (2%) (p<0.001). In 52.6% of these patients, death occurred after withdrawal of treatment or after not starting resuscitation measures. Patients with prolonged stay showed a high incidence of nosocomial infection (96.3%) and an important consumption of healthcare resources (97.6% required conventional mechanical ventilation, 90.2% required transfusion of blood products, 86.7% required intravenous vasoactive drugs and 22.9% required extracorporeal membrane oxygenation [ECMO]). CONCLUSIONS: Critical children with prolonged stay in the PICU show important morbidity and mortality, and an important consumption of healthcare resources. The adoption of specific measures permitting early identification of patients at risk of prolonged stay is needed in order to adapt therapeutic measures and available resources, and to improve treatment efficiency.

Reducing the Burden of Anemia and Neural Tube Defects in Low- and Middle-Income Countries: An Analysis to Identify Countries with an Immediate Potential to Benefit from Large-Scale Mandatory Fortification of Wheat Flour and Rice.

Using a predetermined set of criteria, including burden of anemia and neural tube defects (NTDs) and an enabling environment for large-scale fortification, this paper identifies 18 low- and middle-income countries with the highest and most immediate potential for large-scale wheat flour and/or rice fortification in terms of health impact and economic benefit. Adequately fortified staples, delivered at estimated coverage rates in these countries, have the potential to avert 72.1 million cases of anemia among non-pregnant women of reproductive age; 51,636 live births associated with folic acid-preventable NTDs (i.e., spina bifida, anencephaly); and 46,378 child deaths associated with NTDs annually. This equates to a 34% reduction in the number of cases of anemia and 38% reduction in the number of NTDs in the 18 countries identified. An estimated 5.4 million disability-adjusted life years (DALYs) could be averted annually, and an economic value of 31.8 billion United States dollars (USD) generated from 1 year of fortification at scale in women and children beneficiaries. This paper presents a missed opportunity and warrants an urgent call to action for the countries identified to potentially avert a significant number of preventable birth defects, anemia, and under-five child mortality and move closer to achieving health equity by 2030 for the Sustainable Development Goals.

Social and financial barriers may contribute to a "hidden mortality" in Uganda for children with congenital anomalies.

BACKGROUND: The true incidence of congenital anomalies in sub-Saharan Africa is unknown. Owing to complex challenges associated with congenital anomalies, many affected babies may never present to a health facility, resulting in an underestimation of disease burden. METHODS: Interviews were conducted with Ugandans between September 2018 and May 2019. Responses from community members versus families of children with congenital anomalies were compared. RESULTS: A total of 198 Ugandans were interviewed (91 family members, 80 community members). All participants (N = 198) believed that seeking surgical care would lead to poverty, 43% (n = 84) assumed fathers would abandon the child, and 26% (n = 45) thought a child with a congenital anomaly in their community had been left to die. Causes of anomalies were believed to be contraceptive methods (48%, n = 95), witchcraft (17%, n = 34), or drugs (10%, n = 19). Of family members, 25 (28%) were advised to allow the child to die. Families with affected children were more likely to have a lower income (P < .001), believe anomalies could be treated (P = .007), but thought that allowing the child to die was best for the family (32% vs 9%; P < .0001). Monthly household income <50,000 Uganda shillings ($13 United States dollars) was a significant predictor of the father leaving the family (P = .024), being advised to not pursue medical care (P = .046), and believing that God should decide the child's fate (P = .047). CONCLUSION: Families face significant financial and social pressures when deciding to seek surgical care for a child with a congenital anomaly. Many children with anomalies may die and never reach a health facility to be counted, thus contributing to a hidden mortality.

Access, quality and costs of prenatal diagnosis.

The background risk of birth defects ranges from 2 to 5%. These birth defects are responsible for 30% of all admissions to pediatric hospitals and are responsible for a large proportion of neonatal and infant deaths. Medicine and Genetics have taken giant steps in their ability to detect and treat genetic disorders in utero. Screening tests for prenatal diagnosis should be offered to all pregnant women to assess their risk of having a baby with a birth defect or genetic disorder. Psychosocial and financial factors, inadequate insurance coverage, and the inability to pay for health care services are some of the known barriers to healthcare. These barriers are particularly magnified when there is a language barrier. From an economical standpoint it has been demonstrated that prenatal diagnosis has the potential of saving millions of dollars to our healthcare system. But when patients do not have the resources to access prenatal care and prenatal diagnosis cost shifting occurs, escalating healthcare costs. Our current healthcare system promotes inequalities in its delivery. With the existing barriers to access, quality, and costs of prenatal diagnosis we are confronted with an inefficient and flawed system.

Methods for developing useful estimates of the costs associated with birth defects.

BACKGROUND: Cost estimates for birth defects are useful to policy makers in deciding the best use of resources to prevent these conditions. Much of the effort in this area has focused on spina bifida, in part because cost savings can be estimated from folic acid-preventable cases. However, comprehensive cost-of-illness estimates for this condition may be too outdated, too general, or not applicable to individual states' environments. METHODS: Using the live birth prevalence for spina bifida in Texas, we applied recent spina bifida cost estimates to approximate total lifetime medical and other costs for an average live birth cohort of spina bifida cases in Texas. In addition, we queried various government programs that provide services for persons with spina bifida to provide program-specific annual costs for this condition. RESULTS: Applying a recently published average lifetime medical cost of $635,000 per case of spina bifida to the average annual birth cohort of 120 Texas cases, an estimated $76 million in direct and indirect medical and other costs will be incurred in Texas over the life span of that cohort. Examples of estimated medical costs for one year are $5 million for infants using actual employer-paid insurance claims data and $6 million combined for children in two public sector programs. DISCUSSION: Stakeholders and state policy makers may look to state birth defects registries for useful cost data. Although comprehensive state-specific figures are not available, applying prevalence data to existing estimates and obtaining actual claims and program expenditures may help close this information gap.

Primary prevention as an essential factor ensuring sustainability of health systems: the example of congenital anomalies.

Protection of early development contributes to health of next generations. Congenital anomalies (and other adverse reproductive outcomes) are an important public health issue and early indicator of public health risks, as early development is influenced by many risk factors (e.g., nutrition, lifestyles, pollution, infections, medications, etc). Effective primary prevention requires an integrated "One Health" approach, linking knowledge and action. This requires surveillance of health events and potential health-damaging factors, science-based risk analysis, citizens' empowerment and education of health professionals. From the policy standpoint, joint budgeting mechanisms are needed to sustain with equity intersectoral actions (involving policy domains of health, social affairs, education, agriculture and environment). States should devote resources to strengthen registries and systematic data collection for surveillance of congenital anomalies, to better inform national prevention strategies. Investing in primary prevention based on scientific evidence is essential to support sustainable and resilient health systems and sustainable development of the society.

The disproportionate cost of operation and congenital anomalies in infancy.

BACKGROUND: Congenital anomalies are the leading cause of infant death and pediatric hospitalization, but existing estimates of the associated costs of health care are either cross-sectional surveys or economic projections. We sought to determine the percent of total hospital health care expenditures attributable to major anomalies requiring surgery within the first year of life. METHODS: Utilizing comprehensive California statewide data from 2008 to 2012, cohorts of infants undergoing major surgery, with birth defects and with surgical anomalies, were constructed alongside a referent group of newborns with no anomalies or operations. Cost-to-charge and physician fee ratios were used to estimate hospital and professional costs, respectively. For each cohort, costs were broken down according to admission, birth episode, and first year of life, with additional stratifications by birth weight, gestational age, and organ system. RESULTS: In total, 68,126 of 2,205,070 infants (3.1%) underwent major surgery (n = 32,614) or had a diagnosis of a severe congenital anomaly (n = 57,793). These accounted for $7.7 billion of the $18.9 billion (40.7%) of the total health care costs/expenditures of the first-year-of-life hospitalizations, $7.0 billion (48.6%) of the costs for infants with comparatively long birth episodes, and $5.2 billion (54.7%) of the total neonatal intensive care unit admission costs. Infants with surgical anomalies (n = 21,264) totaled $4.1 billion (21.7%) at $80,872 per infant. Cardiovascular and gastrointestinal diseases accounted for most admission costs secondary to major surgery or congenital anomalies. CONCLUSION: In a population-based cohort of infant births compared with other critically ill neonates, surgical congenital anomalies are disproportionately costly within the United States health care system. The care of these infants, half of whom are covered by Medi-Cal or Medicaid, stands as a particular focus in an age of reform of health care payments.