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Zika virus infection during pregnancy can cause microcephaly with severe brain damage in the fetus (referred to here as Zika virus-associated microcephaly [ZAM]) and is linked to pregnancy loss and [...]

Background The Department of Health and Human Services (HHS) Advisory Committee on Heritable Disorders in Newborns and Children ('Advisory Committee') makes recommendations to the HHS Secretary regarding addition of new conditions to the national Recommended Uniform Screening Panel for newborns. The Advisory Committee's decision-making process includes assessing the net benefit of screening for nominated conditions, informed by systematic evidence reviews generated by an independent Condition Review Workgroup. The evidence base regarding harms associated with screening for specific conditions is often more limited than that for benefits. Procedures The process for defining potential harms from newborn screening reviewed the frameworks from other public health evidence-based review processes, adapted to newborn screening by experts in systematic review, newborn screening programs and bioethics, with input from and approval by the Advisory Committee. Main findings To support the Advisory Committee's review of nominated conditions, the Workgroup has developed a standardized approach to evaluation of harms and relevant gaps in the evidence. Types of harms include the physical burden to infants; psychosocial and logistic burdens to families from screening or diagnostic evaluation; increased risk of medical treatment for infants diagnosed earlier than children with clinical presentation; delayed diagnosis from false negative results; psychosocial harm from false positive results; uncertainty of clinical diagnosis, age of onset or clinical spectrum; and disparities in access to diagnosis or therapy. Conclusions Estimating the numbers of children at risk, the magnitude, timing and likelihood of harms will be integrated into Workgroup reports to the Advisory Committee., Author(s): Aaron J. Goldenberg[sup.1] , Anne Marie Comeau[sup.2] , Scott D. Grosse[sup.3] , Susan Tanksley[sup.4] , Lisa A. Prosser[sup.5] [sup.6] , Jelili Ojodu[sup.7] , Jeffrey R. Botkin[sup.8] , Alex R. [...]

This study estimated medical expenditures attributable to cerebral palsy (CP) among children enrolled in Medicaid, stratified by the presence of co-occurring intellectual disability (ID), relative to children without CP or ID. The MarketScan[R] Medicaid Multi-State database was used to identify children with CP for 2003-2005 by using the "International Classification of Diseases, Ninth Revision; Clinical Modification" (ICD-9-CM) code 343.xx. Children with ID were identified for 2005 by using ICD-9-CM code 317.xx-319.xx. Children without CP or ID during the same period served as control subjects. Medical expenditures were estimated for case and control children for 2005. The difference between the average expenditures for children with and without CP was used as a proxy for attributable expenditures for the condition. The attributable expenditures of co-occurring ID were calculated similarly as the difference in average expenditures among children with CP with and without ID. A total of 9927 children with CP were identified. Among them, 2022 (20.3%) children had co-occurring ID recorded in medical claims. Children with CP but without ID incurred medical expenditures that were $15,047 higher than those of control children without CP or ID. By contrast, children with CP and co-occurring ID incurred costs that were $41,664 higher, compared with control children, and $26,617 more than children with CP but without ID. Administrative data from a large, multistate database demonstrated high medical expenditures for publicly insured children with CP. Expenditures approximately tripled for children with CP and co-occurring ID. (Contains 1 figure and 5 tables.)

Individuals with late-treated phenylketonuria (PKU) not detected by newborn screening but who followed dietary treatment for at least 12 months before 7 years of age have intelligence quotient (IQ) scores that range from severe impairment to the low-normal range. Among adults with late-treated PKU in California, 85% of those who were born from 1961 to 1978 had IQ scores of 70 or above. Longitudinal studies with repeated cognitive assessments often show average changes in cognitive test scores as high as 20-45 points. Although the severe cognitive impairment associated with untreated PKU can in many cases be partially reversed with dietary treatment, prompt initiation of treatment following newborn metabolic screening is essential for optimal development and the prevention of disability. (Contains 2 tables.)

The well-being of caregivers of children with spina bifida and other conditions is an important topic. We interviewed the primary caregivers of 98 children aged 0-17 years with spina bifida sampled from a population-based birth defects registry in Arkansas and the caregivers of 49 unaffected children. Measures of caregiver well-being were compared between the groups and by level of lesion (sacral, lower lumbar, and upper lumbar/thoracic). We performed linear and logistic regression analysis to test the associations controlling for other characteristics. Among caregivers of children with spina bifida, the average number of hours of sleep was significantly less than reported by other caregivers and was associated with lesion level among children less than 7 years of age. Significant associations, often varying by child age, were also found for the caregiver's reports of lower Quality of Well-Being (QWB) score, often feeling blue, rarely feeling happy, fair or poor health, lack of leisure days, and not hosting friends, but no significant association was found with not visiting friends. The intensive long-term care required by children with spina bifida, particularly by those with higher lesions, can negatively impact caregiver health and well-being. Support for these caregivers is needed.

This study provides estimates of medical expenditures for a subset of children and adolescents who receive employer-based health insurance and have a medical diagnosis of an autism spectrum disorder (ASD). Data analyzed were from the 2003 MarketScan[R] research databases. Individuals with an ASD had average medical expenditures that exceeded those without an ASD by $4,110-$6,200 per year. On average, medical expenditures for individuals with an ASD were 4.1-6.2 times greater than for those without an ASD. Differences in median expenditures ranged from $2,240 to $3,360 per year with median expenditures 8.4-9.5 times greater. These findings add to a growing body of evidence that children and adolescents with medical diagnoses of an ASD incur elevated medical utilization and costs.

This paper explores issues and implications for diagnosis and treatment, stemming from the growing number of children identified with autism spectrum disorders (ASDs). Recent developments and innovations in special education and Medicaid programs are emphasized. Eligibility determination policies, innovations in diagnostic practices, the cost and financing of assessment, variability among programs in diagnostic criteria, and racial/ethnic disparities in the timing of diagnosis all influence the capacity of service systems to provide diagnoses in a timely, coordinated, accurate, economical, and equitable manner. There are several barriers to the more widespread provision of intensive intervention for children with ASDs, including lack of strong evidence of effectiveness in scaled-up public programs, uncertainty about the extent of obligations to provide services under the Individuals with Disabilities Education Act, high cost of intervention, and variability among states in their willingness to fund intensive intervention via Medicaid. Innovative policy experiments with respect to financing intensive intervention through schools and Medicaid are being conducted in a number of states.