A quality assessment of reporting sources for microcephaly in Utah, 2003 to 2013.

BACKGROUND: Obtaining accurate microcephaly prevalence is important given the recent association between microcephaly and Zika virus. Assessing the quality of data sources can guide surveillance programs as they focus their data collection efforts. The Utah Birth Defect Network (UBDN) has monitored microcephaly by data sources since 2003. The objective of this study was to examine the impact of reporting sources for microcephaly surveillance. METHODS: All reported cases of microcephaly among Utah mothers from 2003 to 2013 were clinically reviewed and confirmed. The UBDN database was linked to state vital records and hospital discharge data for analysis. Reporting sources were analyzed for positive predictive value and sensitivity. RESULTS: Of the 477 reported cases of microcephaly, 251 (52.6%) were confirmed as true cases. The UBDN identified 94 additional cases that were reported to the surveillance system as another birth defect, but were ultimately determined to be true microcephaly cases. The prevalence for microcephaly based on the UBDN medical record abstraction and clinical review was 8.2 per 10,000 live births. Data sources varied in the number and accuracy of reporting, but a case was more likely to be a true case if identified from multiple sources than from a single source. CONCLUSION: While some reporting sources are more likely to identify possible and true microcephaly cases, maintaining a multiple source methodology allows for more complete case ascertainment. Surveillance programs should conduct periodic assessments of data sources to ensure their systems are capturing all possible birth defects cases. Birth Defects Research (Part A) 106:983-988, 2016. © 2016 Wiley Periodicals, Inc.

The impact of surveillance method and record source on autism prevalence: collaboration with Utah Maternal and Child Health programs.

With the increasing number of Utah children identified with autism spectrum disorders (ASDs), information on the prevalence and characteristics of these children could help Maternal Child Health (MCH) programs develop population building activities focused on prevention, screening, and education. The purpose of this study is to describe Utah's autism registry developed in collaboration with state MCH programs and assess the impact of different record-based surveillance methods on state ASD prevalence rates. The study was conducted using 212 ASD cases identified from a population of 26,217 eight year olds living in one of the three most populous counties in Utah (Davis, Salt Lake, and Utah) in 2002. ASD prevalence was determined using two records based approaches (administrative diagnoses versus abstraction and clinician review) by source of record ascertainment (education, health, and combined). ASD prevalence ranged from 7.5 per 1000 (95% CI 6.4-8.5) to 3.2 per 1000 (95% CI 2.5-3.9) varying significantly (P < .05) based on method and record source. The ratio of male-to-female ranged from 4.7:1 to 6.4:1. No significant differences were found between the two case ascertainment methods on 18 of the 23 case characteristics including median household income, parental education, and mean age of diagnosis. Broad support is needed from both education and health sources as well as collaboration with MCH programs to address the growing health concerns, monitoring, and treatment needs of children and their families impacted by autism spectrum disorders.

Communication disorders: prevalence and comorbid intellectual disability, autism, and emotional/behavioral disorders.

PURPOSE: To determine a population-based estimate of communication disorders (CDs) in children; the co-occurrence of intellectual disability (ID), autism, and emotional/behavioral disorders; and the impact of these conditions on the prevalence of CDs. METHOD: Surveillance targeted 8-year-olds born in 1994 residing in 2002 in the 3 most populous counties in Utah (n = 26,315). A multiple-source record review was conducted at all major health and educational facilities. RESULTS: A total of 1,667 children met the criteria of CD. The prevalence of CD was estimated to be 63.4 per 1,000 8-year-olds (95% confidence interval = 60.4-66.2). The ratio of boys to girls was 1.8:1. Four percent of the CD cases were identified with an ID and 3.7% with autism spectrum disorders (ASD). Adjusting the CD prevalence to exclude ASD and/or ID cases significantly affected the CD prevalence rate. Other frequently co-occurring emotional/behavioral disorders with CD were attention deficit/hyperactivity disorder, anxiety, and conduct disorder. CONCLUSIONS: Findings affirm that CDs and co-occurring mental health conditions are a major educational and public health concern.

Factors associated with nonanomalous stillbirths: the Utah Stillbirth Database 1992-2002.

OBJECTIVE: This study was undertaken to characterize risk factors associated with nonanomalous stillborn (SB) infants and to ascribe the probability of fetal survival by gestational age among high-risk pregnancies. STUDY DESIGN: We compiled a database of all SB infants and an equivalent number of controls using information obtained from Utah Birth and Fetal Death Certificates during the years 1992 through 2002. Adjusted and unadjusted odds ratios for risk factors associated with SB were generated. Cox proportional hazard models were used to generate survival curves comparing pregnancies complicated by chronic hypertension or gestational hypertension with those of controls. RESULTS: Infants with major anomalies were eliminated from both cases and controls, to generate 1566 nonanomalous SBs and 2720 nonanomalous controls. In a logistic regression model controlling for multiple maternal and fetal factors, placental abruption, hydramnios, cord prolapse, and essential hypertension were associated with an increased risk of SB. In pregnancies complicated by essential hypertension, the survival curve diverged from that of controls at those gestational ages approaching term (hazard ratio 2.24; 95% CI 1.52-3.32). CONCLUSION: SB in nonanomalous infants in Utah is more common among pregnancies complicated by placental abruption, hydramnios, cord prolapse, and essential hypertension.

Sociodemographic risk factors associated with autism spectrum disorders and intellectual disability.

This study examined the hypotheses that (1) sociodemographic risk factors in young children with autism spectrum disorders (ASD) and/or intellectual disability (ID) significantly vary by disability type, and (2) measures of income (mean adjusted gross income, mean federal taxes paid, and mean tax exemptions) significantly increase between 1994 and 2002, and are lower in families with a child with ASD and/or ID compared with the general population. A multiple source surveillance system utilizing a retrospective record review was used to identify ASD and ID cases from a population of 26,108 eight-year-old children born in 1994 and living in Utah in 2002. ASD without ID (ASD-only, n = 99) cases were significantly more likely to be male (P<0.01) and have mothers of White non-Hispanic ethnicity (P = 0.02). ASD with ID (ASD/ID, n = 33) cases were significantly more likely to be male (P<0.01) and have mothers older than 34 years (P = 0.03). ID without ASD (ID-only, n = 113) cases were significantly more likely to have fathers older than 34 years (P<0.01) and were significantly less likely to have mothers with >13 years education (P<0.01). Measures of income for cases at birth and at 8 years of age were not significantly lower than the general population and mean adjusted income of cases significantly increased from birth to 8 years of age. Investigations focused on defining early sociodemographic risk factors by different endophenotypes of ASD may assist in identifying risk factors for this complex group of neurodevelopmental disorders. Aggregate tax information may be a unique resource to utilize for population-based analysis.