National population-based estimates for major birth defects, 2016-2020.

BACKGROUND: We provide updated crude and adjusted prevalence estimates of major birth defects in the United States for the period 2016-2020. METHODS: Data were collected from 13 US population-based surveillance programs that used active or a combination of active and passive case ascertainment methods to collect all birth outcomes. These data were used to calculate pooled prevalence estimates and national prevalence estimates adjusted for maternal race/ethnicity for all conditions, and maternal age for trisomies and gastroschisis. Prevalence was compared to previously published national estimates from 1999 to 2014. RESULTS: Adjusted national prevalence estimates per 10,000 live births ranged from 0.63 for common truncus to 18.65 for clubfoot. Temporal changes were observed for several birth defects, including increases in the prevalence of atrioventricular septal defect, tetralogy of Fallot, omphalocele, trisomy 18, and trisomy 21 (Down syndrome) and decreases in the prevalence of anencephaly, common truncus, transposition of the great arteries, and cleft lip with and without cleft palate. CONCLUSION: This study provides updated national estimates of selected major birth defects in the United States. These data can be used for continued temporal monitoring of birth defects prevalence. Increases and decreases in prevalence since 1999 observed in this study warrant further investigation.

Risk of Cardiovascular Disease After COVID-19 Diagnosis Among Adults With and Without Diabetes.

Background Growing evidence suggests incident cardiovascular disease (CVD) may be a long-term outcome of COVID-19 infection, and chronic diseases, such as diabetes, may influence CVD risk associated with COVID-19. We evaluated the postacute risk of CVD >30 days after a COVID-19 diagnosis by diabetes status. Methods and Results We included adults ≥20 years old with a COVID-19 diagnosis from March 1, 2020 through December 31, 2021 in a retrospective cohort study from the IQVIA PharMetrics Plus insurance claims database. A contemporaneous control group comprised adults without recorded diagnoses for COVID-19 or other acute respiratory infections. Two historical control groups comprised patients with or without an acute respiratory infection. Cardiovascular outcomes included cerebrovascular disorders, dysrhythmia, inflammatory heart disease, ischemic heart disease, thrombotic disorders, other cardiac disorders, major adverse cardiovascular events, and any CVD. The total sample comprised 23 824 095 adults (mean age, 48.4 years [SD, 15.7 years]; 51.9% women; mean follow-up, 8.5 months [SD, 5.8 months]). In multivariable Cox regression models, patients with a COVID-19 diagnosis had a significantly greater risk of all cardiovascular outcomes compared with patients without a diagnosis of COVID-19 (hazard ratio [HR], 1.66 [1.62-1.71], with diabetes; HR, 1.75 [1.73-1.78], without diabetes). Risk was attenuated but still significant for the majority of outcomes when comparing patients with COVID-19 to both historical control groups. Conclusions In patients with COVID-19 infection, postacute risk of incident cardiovascular outcomes is significantly higher than among controls without COVID-19, regardless of diabetes status. Therefore, monitoring for incident CVD may be essential beyond the first 30 days after a COVID-19 diagnosis.

Evaluating the Usability of an Emergency Department After Visit Summary: Staged Heuristic Evaluation.

BACKGROUND: Heuristic evaluations, while commonly used, may inadequately capture the severity of identified usability issues. In the domain of health care, usability issues can pose different levels of risk to patients. Incorporating diverse expertise (eg, clinical and patient) in the heuristic evaluation process can help assess and address potential negative impacts on patient safety that may otherwise go unnoticed. One document that should be highly usable for patients-with the potential to prevent adverse outcomes-is the after visit summary (AVS). The AVS is the document given to a patient upon discharge from the emergency department (ED), which contains instructions on how to manage symptoms, medications, and follow-up care. OBJECTIVE: This study aims to assess a multistage method for integrating diverse expertise (ie, clinical, an older adult care partner, and health IT) with human factors engineering (HFE) expertise in the usability evaluation of the patient-facing ED AVS. METHODS: We conducted a three-staged heuristic evaluation of an ED AVS using heuristics developed for use in evaluating patient-facing documentation. In stage 1, HFE experts reviewed the AVS to identify usability issues. In stage 2, 6 experts of varying expertise (ie, emergency medicine physicians, ED nurses, geriatricians, transitional care nurses, and an older adult care partner) rated each previously identified usability issue on its potential impact on patient comprehension and patient safety. Finally, in stage 3, an IT expert reviewed each usability issue to identify the likelihood of successfully addressing the issue. RESULTS: In stage 1, we identified 60 usability issues that violated a total of 108 heuristics. In stage 2, 18 additional usability issues that violated 27 heuristics were identified by the study experts. Impact ratings ranged from all experts rating the issue as "no impact" to 5 out of 6 experts rating the issue as having a "large negative impact." On average, the older adult care partner representative rated usability issues as being more significant more of the time. In stage 3, 31 usability issues were rated by an IT professional as "impossible to address," 21 as "maybe," and 24 as "can be addressed." CONCLUSIONS: Integrating diverse expertise when evaluating usability is important when patient safety is at stake. The non-HFE experts, included in stage 2 of our evaluation, identified 23% (18/78) of all the usability issues and, depending on their expertise, rated those issues as having differing impacts on patient comprehension and safety. Our findings suggest that, to conduct a comprehensive heuristic evaluation, expertise from all the contexts in which the AVS is used must be considered. Combining those findings with ratings from an IT expert, usability issues can be strategically addressed through redesign. Thus, a 3-staged heuristic evaluation method offers a framework for integrating context-specific expertise efficiently, while providing practical insights to guide human-centered design.

Satisfaction of Older Patients With Emergency Department Care: Psychometric Properties and Construct Validity of the Consumer Emergency Care Satisfaction Scale.

BACKGROUND: Patient satisfaction is an important indicator of quality of care, but its measurement remains challenging. The Consumer Emergency Care Satisfaction Scale (CECSS) was developed to measure patient satisfaction in the emergency department (ED). Although this is a valid and reliable tool, several aspects of the CECSS need to be improved, including the definition, dimension, and scoring of scales. PURPOSE: The purpose of this study was to examine the construct validity of the CECSS and make suggestions on how to improve the tool to measure overall satisfaction with ED care. METHODS: We administered 2 surveys to older adults who presented with a fall to the ED and used electronic health record data to examine construct validity of the CECSS and ceiling effects. RESULTS: Using several criteria, we improved construct validity of the CECSS, reduced ceiling effects, and standardized scoring. CONCLUSION: We addressed several methodological issues with the CECSS and provided recommendations for improvement.

A human factors and ergonomics approach to conceptualizing care work among caregivers of people with dementia.

Society relies upon informal (family, friend) caregivers to provide much of the care to the estimated 43.8 million individuals living with Alzheimer's disease and related dementias globally. Caregivers rarely receive sufficient training, resources, or support to meet the demands associated with dementia care, which is often associated with increased risk of suboptimal outcomes. Human factors and ergonomics (HFE) can address the call for new approaches to better understand caregiving and support caregiver performance through systematic attention to and design of systems that support the work of caregivers- their care work. Thus, our objective was to perform a work system analysis of care work. We conducted a qualitative study using a Critical Incident Technique interviewing approach and Grounded Dimensional Analysis analytic procedures. Our findings introduce a new conceptual framework for understanding the care work system of dementia caregivers and suggest that care work is influenced by interactions among distinct caregiver goals, the task demands of the care needs of the person with dementia, daily life needs of the caregiver and family, and contextual factors that shape caregivers' perceptions surrounding care. The initial work system model produced by this study provides a foundation from which future work can further elucidate the care work system, determine how the care work system intersects and coordinates with other work systems such as the patient work system, and design systems that address caregivers' individual caregiving context.

Older Adult Patients and Care Partners as Knowledge Brokers in Fragmented Health Care.

OBJECTIVE: To describe older adult patients' and care partners' knowledge broker roles during emergency department (ED) visits. BACKGROUND: Older adult patients are vulnerable to communication and coordination challenges during an ED visit, which can be exacerbated by the time and resource constrained ED environment. Yet, as a constant throughout the patient journey, patients and care partners can act as an information conduit, or knowledge broker, between fragmented care systems to attain high-quality, safe care. METHODS: Participants included 14 older adult patients (≥ 65 years old) and their care partners (e.g., spouse, adult child) who presented to the ED after having experienced a fall. Human factors researchers collected observation data from patients, care partners and clinician interactions during the patient's ED visit. We used an inductive content analysis to determine the role of patients and care partners as knowledge brokers. RESULTS: We found that patients and care partners act as knowledge brokers by providing information about diagnostic testing, medications, the patient's health history, and care accommodations at the disposition location. Patients and care partners filled the role of knowledge broker proactively (i.e. offer information) and reactively (i.e. are asked to provide information by clinicians or staff), within-ED work system and across work systems (e.g., between the ED and hospital), and in anticipation of future knowledge brokering. CONCLUSION: Patients and care partners, acting as knowledge brokers, often fill gaps in communication and participate in care coordination that assists in mitigating health care fragmentation.

Proportion of critical congenital heart defects attributable to unhealthy prepregnancy body mass index among women with live births in Florida, 2005-2016.

BACKGROUND: Associations between maternal prepregnancy body mass index (BMI) and congenital heart defects have been reported, however, the proportion of critical congenital heart defects (CCHDs) attributable to unhealthy prepregnancy BMI has not been determined. Our objective was to investigate the association between maternal prepregnancy BMI and CCHDs. METHODS: The Florida Birth Defects Registry was used to identify infants with CCHDs born between 2005-2016. Birth certificate data were used to define the source population and identify perinatal and socio-demographic characteristics. BMI values were categorized as underweight (<18.5), normal weight (18.5-24.9), overweight (25.0-29.9), obese I (30.0-34.9), obese II (35.0-39.9), and obese III (≥40.0). Multi-predictor logistic regression models were used to estimate adjusted odds ratios (aORs) and 99% confidence intervals representing the association between maternal prepregnancy BMI and CCHDs. Adjusted population attributable fractions (PAFs) for the aORs were calculated. RESULTS: We observed a significantly increased risk of "any CCHD" in infants born to women at any level of obesity. Among the 12 CCHDs examined, 5 showed a significantly increased risk among mothers in the two highest obesity levels (II & III). Approximately 8% of all CCHDs may be attributed to suboptimal maternal prepregnancy BMI, with the highest total individual CCHD PAFs for pulmonary valve atresia (21.7%) and total anomalous pulmonary venous return (12.8%). CONCLUSIONS: Women with suboptimal prepregnancy BMI are at increased odds of having a child born with a CCHD. We found evidence of a direct dose-response relationship between prepregnancy BMI and odds for CCHD; with variation by CCHD subtype.

A scoping review of interventions for older adults transitioning from hospital to home.

BACKGROUND/OBJECTIVES: Older adults are at high risk for adverse outcomes as they transition from hospital to home. Transitional care interventions primarily focus on care coordination and medication management and may miss key components. The objective of this study is to examine the current scope of hospital-to-home transitional care interventions that impact health-related outcomes and to examine other key components including engagement by older adults and their caregivers. DESIGN: Scoping review. METHODS: Eligible articles focused on hospital transition to home intervention, measured primary outcomes posthospitalization, used randomized controlled trial designs, and included primarily adults aged 60 years and older. Articles included in this review were reviewed in full and all data were extracted that related to study objective, setting, population, sample, intervention, primary and secondary outcomes, and main results. RESULTS: Five hundred sixty-seven records were identified by title. Forty-four articles were deemed eligible and included. Most common transitional care intervention components were care continuity and coordination, medication management, symptom recognition, and self-management. Few studies reported a focus on caregiver needs or goals. Common modes of intervention delivery included by phone, in person while the patient was hospitalized, and in person in the community following hospital discharge. The most common outcomes were readmission and mortality. CONCLUSION: To improve outcomes beyond healthcare utilization, a paradigm shift is required in the design and study of care transition interventions. Future interventions should explore methods or novel interventions for caregiver engagement; leverage an interdisciplinary team or care coordination hub with engagement from underrepresented specialties such as social work and occupational therapy; and examine opportunities for interventions designed specifically to address older adult and caregiver-reported needs and their well-being.

Disparate perspectives: Exploring healthcare professionals' misaligned mental models of older adults' transitions of care between the emergency department and skilled nursing facility.

Care transitions that occur across healthcare system boundaries represent a unique challenge for maintaining high quality care and patient safety, as these systems are typically not aligned to perform the care transition process. We explored healthcare professionals' mental models of older adults' transitions between the emergency department (ED) and skilled nursing facility (SNF). We conducted a thematic analysis of interviews with ED and SNF healthcare professionals and identified three themes: 1) ED and SNF healthcare professionals had misaligned mental models regarding communication processes and tools used during care transitions, 2) ED and SNF healthcare professionals had misaligned mental models regarding healthcare system capability, and 3) Misalignments led to individual and organizational consequences. Overall, we found that SNF and ED healthcare professionals are part of the same process but have different perceptions of the process. Future work must take steps to redesign and realign these distinct work systems such that those involved conceptualize themselves as part of a joint process.

A process-based approach to exploring the information behavior of informal caregivers of people living with dementia.

INTRODUCTION AND PURPOSE: Informal caregivers of persons living with dementia have significant unmet information needs that, if met, would better equip them to provide effective care. Despite the existence of health information technologies, websites, resources, and organizations dedicated to dementia caregiving, caregivers continue to report unmet information needs. Caregivers' continued unmet information needs suggest a misalignment between information products, and caregivers' information behavior-how caregivers generate, acquire, manage, use, communicate, and seek information. Researchers have developed conceptual models for understanding caregivers' information behavior, but these models are limited in that they are task-oriented, and they assume that caregivers' information needs will be met if they engage in information behavior. To address these limitations, the present study sought to explore caregivers' information behavior as a sociotechnical-systems-based process. METHODS: We conduced semi-structured interviews with 30 self-identified caregivers to explore their daily experience of caregiving activities, including their information behavior. We applied a process-based conceptual framework that takes into account inputs, processes, outputs, and feedback mechanisms within a sociotechnical system to guide analysis. The process of interest was caregivers' information behavior as modeled by the information-seeking and communication model (ISCM). We conducted a deductive content analysis guided by the components of the ISCM. We then used team-based affinity diagramming to collapse and categorize the ISCM components into inputs, processes, outputs, and feedback. RESULTS: We developed a conceptual model to depict caregivers' information behavior as a sociotechnical-systems-based process of inputs, processes, and outputs that feedback into the system. The conceptual model consisted of three inputs (i.e., information users, information providers, and information products), three information seeking and communication processes (i.e., information access, information interaction, and information assessment and processing), two outputs (i.e., utility and credibility), and feedback. DISCUSSION AND CONCLUSION: Building on and addressing the gaps in previous information behavior models, our conceptual framework advances the previous task-level understandings of caregivers' information behavior into a comprehensive feedback-driven, process-level perspective consisting of context-based inputs, information seeking and communication processes, outputs, and feedback. A sociotechnical-systems-based understanding of caregivers' information behavior allows for misalignments between information providers and products, and caregivers' information behavior not only to be illuminated, but systematically addressed.

Exploring SEIPS 2.0 as a model for analyzing care transitions across work systems.

Care transitions across healthcare settings, specifically between the emergency department (ED) and the home, are pervasive among older adults, and represent persistent healthcare quality and safety challenges. Care transitions cross multiple distinct work systems, representing a conceptual and methodological challenge for the field of Human Factors/Ergonomics - how to analyze a process that occurs across multiple work systems. As an initial step in determining how to study care transitions across work systems, we applied the Systems Engineering Initiative for Patient Safety (SEIPS) 2.0 model, specifically the concept of configuration, to explore older adults' ED-to-home transitions. Our results suggest that configuration is useful for identifying and modeling work system barriers that interact across systems, but does not explicitly allow for the identification and analysis of the system boundaries that are crossed. To fully capture the complexity associated with care transitions, future iterations of SEIPS should introduce a mechanism to capture specific boundary types, so that system analysis can capture when and which boundaries are crossed.

Physician Perceptions of Disposition Decision-making for Older Adults in the Emergency Department: A Preliminary Analysis.

Disposition decision-making in the emergency department (ED) is critical to patient safety and quality of care. Disposition decision-making has particularly important implications for older adults who comprise a significant portion of ED visits annually and are vulnerable to suboptimal outcomes throughout ED care transitions. We conducted a secondary inductive content analysis of interviews with ED physicians (N= 11) to explore their perceptions of who they involve in disposition decision-making and what information they use to make disposition decisions for older adults. ED physicians cited 7 roles (5 types of clinicians, patients and families) and 11 information types, both clinical (e.g. test/lab results) and non-clinical (e.g. family's preference). Our preliminary findings represent a key first step toward the development of interventions that promote patient safety and quality of care for older adults in the ED by supporting the cognitive and communicative aspects of disposition decision-making.

Evaluating the impact of expanding the number of diagnosis codes reported in inpatient discharge databases on the counts and rates of birth defects.

Objective: Public health surveillance programs worldwide implement a variety of case-finding strategies, and many rely at least in part on International Classification of Diseases (ICD)-based diagnostic codes in administrative and clinical databases. Over time, state- and national-level hospital discharge databases have been expanding the number of reported diagnosis code fields. This study aimed to evaluate the impact of these expansions on frequencies and rates of major birth defects, and the classification of birth defects as isolated vs multiple. Methods: We used state-level 2006-2013 Florida Birth Defects Registry data and 2009-2012 data from a nationally representative database (Kids' Inpatient Database). We generated data under different scenarios by varying the number of diagnosis code fields available, and comparing counts and rates of major birth defects generated under each scenario. Results: The expansion from 10 to 31 diagnosis code fields improved ascertainment by preventing the loss of 1 in every 40 birth defect cases with defect-related diagnoses appearing only in code positions 11 to 31. Although there was variation by birth defect, the largest impact of the expansion tended to occur for less severe birth defects diagnosed in sicker infants. When restricting to fewer codes, not only were fewer cases diagnosed, but more were classified as being isolated due to the inability to capture co-occurring defects. Conclusion: Our findings encourage additional research for other health outcomes in patients of all ages. Other disease registries rely at least in part on diagnostic codes documented by healthcare providers in their case-finding activities, irrespective of ascertainment protocols, making routine investigation of these databases essential.

Identifying Algorithms to Improve the Accuracy of Unverified Diagnosis Codes for Birth Defects.

OBJECTIVES: We identified algorithms to improve the accuracy of passive surveillance programs for birth defects that rely on administrative diagnosis codes for case ascertainment and in situations where case confirmation via medical record review is not possible or is resource prohibitive. METHODS: We linked data from the 2009-2011 Florida Birth Defects Registry, a statewide, multisource, passive surveillance program, to an enhanced surveillance database with selected cases confirmed through medical record review. For each of 13 birth defects, we calculated the positive predictive value (PPV) to compare the accuracy of 4 algorithms that varied case definitions based on the number of diagnoses, medical encounters, and data sources in which the birth defect was identified. We also assessed the degree to which accuracy-improving algorithms would affect the Florida Birth Defects Registry's completeness of ascertainment. RESULTS: The PPV generated by using the original Florida Birth Defects Registry case definition (ie, suspected cases confirmed by medical record review) was 94.2%. More restrictive case definition algorithms increased the PPV to between 97.5% (identified by 1 or more codes/encounters in 1 data source) and 99.2% (identified in >1 data source). Although PPVs varied by birth defect, alternative algorithms increased accuracy for all birth defects; however, alternative algorithms also resulted in failing to ascertain 58.3% to 81.9% of cases. CONCLUSIONS: We found that surveillance programs that rely on unverified diagnosis codes can use algorithms to dramatically increase the accuracy of case finding, without having to review medical records. This can be important for etiologic studies. However, the use of increasingly restrictive case definition algorithms led to a decrease in completeness and the disproportionate exclusion of less severe cases, which could limit the widespread use of these approaches.

Population-based birth defects data in the United States, 2010-2014: A focus on gastrointestinal defects.

BACKGROUND: Gastrointestinal defects are a phenotypically and etiologically diverse group of malformations. Despite their combined prevalence and clinical impact, little is known about the epidemiology of these birth defects. Therefore, the objective of the 2017 National Birth Defects Prevention Network (NBDPN) data brief was to better describe the occurrence of gastrointestinal defects. METHODS: As part of the 2017 NBDPN annual report, 28 state programs provided additional data on gastrointestinal defects for the period 2010-2014. Counts and prevalence estimates (per 10,000 live births) were calculated overall and by demographic characteristics for (1) biliary atresia; (2) esophageal atresia/tracheoesophageal fistula; (3) rectal and large intestinal atresia/stenosis; and (4) small intestinal atresia/stenosis. Additionally, we explored the frequency of these malformations co-occurring with other structural birth defects. RESULTS: Pooling data from all participating registries, the prevalence estimates were: 0.7 per 10,000 live births for biliary atresia (713 cases); 2.3 per 10,000 live births for esophageal atresia/tracheoesophageal fistula (2,472 cases); 4.2 per 10,000 live births for rectal and large intestinal atresia/stenosis (4,334 cases); and 3.4 per 10,000 live births for small intestinal atresia/stenosis (3,388 cases). Findings related to co-occurring birth defects were especially notable for esophageal atresia/tracheoesophageal fistula, rectal and large intestinal atresia/stenosis, and small intestinal atresia/stenosis, where the median percentage of non-isolated cases was 53.9%, 45.5%, and 50.6%, respectively. CONCLUSIONS: These population-based prevalence estimates confirm some previous studies, and provide a foundation for future epidemiologic studies of gastrointestinal defects. Exploring the genetic and environmental determinants of these malformations may yield new clues into their etiologies.

Are Children Born with Birth Defects at Increased Risk of Injuries in Early Childhood?

OBJECTIVE: To investigate the extent to which children with birth defects experience differential likelihood of various injuries and injury-related hospitalizations in early childhood. STUDY DESIGN: The Florida Birth Defects Registry was used to identify infants born 2006-2010 with select birth defects. Injury matrices were used to detect injuries in inpatient, ambulatory, and emergency department admissions for each infant up to their third birthday. χ2tests were used to compare sociodemographic and perinatal characteristics of children, by presence of an injury-related hospital admission. Adjusted multivariable logistic and zero-inflated negative binomial regression models were used to investigate birth defect and injury associations and related hospital use. RESULTS: We observed a 21% (99% CI: 1.16-1.27) increased odds of injury in children with birth defects. All birth defect subgroups had a statistically significantly increased odds of injury (excluding chromosomal defects), with adjusted ORs ranging from 1.19 to 1.40. The combination of birth defects and injuries resulted in 40% (99% CI: 1.36-1.44) more frequent injury-related hospital visits and a 3-fold (99% CI: 2.76-2.96) increase in time spent receiving inpatient medical care. Over 30% of children with critical congenital heart defects had an injury-related hospital admission. CONCLUSIONS: Children born with specific birth defects are at increased likelihood of various injuries during early life. Although the magnitude of this increased likelihood varied by the mechanism by which the injury occurred, the location of the injury, and the type of birth defect, our study findings support a direct association between birth defects and injuries in early life.

Assessing the Impact of Different Race-Bridging Algorithms on the Reported Rate of Birth Defects.

INTRODUCTION: In Florida prior to 2004, the birth certificate only allowed parents to identify themselves as 1 race. The birth certificate was subsequently revised in 2004, allowing parents to identify with more than 1 race. This inconsistency in data collection methods can greatly impact the results of race-specific time trend analyses. Race-bridging techniques have been developed to reassign multiple race responses to single race categories. This investigation aimed to compare race-specific birth defect rates calculated in 2 ways: (1) the current method: treating those selecting multiple race categories as though they selected Other race, and (2) the bridged method: attempting to classify those selecting multiple categories into the category they would have selected if they could only pick 1 race. METHODS: Data from the Florida Office of Vital Statistics and the Florida Birth Defects Registry were used to examine rates of selected birth defects by race among births to non-Hispanic mothers from 2005 to 2014. Rates of selected birth defects were calculated and compared for the following race groups: white, black, American Indian/Alaska Native (AIAN), and Asian/Pacific Islander (API) using the following 6 bridging methods: (1) no bridging method, (2) largest group, whole allocation, (3) smallest group, whole allocation, (4) largest group other than white, (5) equal fractions, fractional allocation, and (6) reported fractions, fractional allocation. RESULTS: The differences in birth defect rates comparing the current method to the recalculated bridged-race population depends on the bridging method used. Using largest group, whole-allocation, the total population of white, black, and API races increased, whereas the total number of AIAN remained unaffected. Using the smallest group or largest group other than white, whole-allocation, the total population of black, API, and AIAN increased, resulting in decreased birth defect rates. Lastly, using equal fractions or reported fractions, fractional allocation we found an increase in the live birth count for each race and a corresponding decrease in birth defect rates. DISCUSSION: Race-bridging techniques may be useful when reviewing race-specific rates over time, or to account for the lack of comparability of race/ethnic classification in birth defect studies, particularly national studies combining data from different states. However, determining the best race-bridging technique warrants further investigation on larger populations and on other health outcomes.

Evaluation of the Sensitivity and Accuracy of Birth Defects Indicators on the 2003 Revision of the U.S. Birth Certificate: Has Data Quality Improved?

BACKGROUND: The 2003 revision of the U.S. Birth Certificate was restricted to birth defects readily identifiable at birth. Despite being the lone source of birth defects cases in some studies, we lack population-based information on the quality of birth defects data from the most recent revision of the birth certificate. METHODS: We linked birth certificate data to confirmed cases from the Florida Birth Defects Registry (FBDR) to assess the sensitivity and positive predictive value (PPV) of birth defects indicators on the birth certificate. Descriptive statistics and log-binomial regression were used to examine variation in data quality measures by defect type and other characteristics. We also evaluated the contribution of birth certificates as a case ascertainment source for the FBDR. RESULTS: Sensitivity of the birth certificate was poor (19.1%) with variation across defects ranging from 55% for anencephaly and 54% for gastroschisis, to <10% for other defects. PPV was better (87.1%) and ranged from >93% for orofacial clefts and gastroschisis to <55% for anencephaly and limb reduction defects. We also observed variation in data quality across maternal, infant, and hospital characteristics. Of cases identified by the birth certificate and not any other FBDR data source, 54.9% were false-positive diagnoses. CONCLUSIONS: Efforts to restrict the 2003 revision of the birth certificate to defects identifiable at birth have not improved the likelihood that birth certificates will identify infants born with those defects. We do not recommend the use of birth certificates as a source of birth defects data without case verification strategies.

Using state and provincial surveillance programs to reduce risk of recurrence of neural tube defects in the United States and Canada: A missed opportunity?

BACKGROUND: Once a woman has had a fetus or infant affected with a neural tube defect (NTD), the risk of recurrence is approximately 3%. This risk can be significantly reduced by folic acid supplement consumption during the periconceptional period; however, this requires women at risk to be adequately informed about the appropriate dosage and timing of supplement intake before planning another pregnancy. As birth defects surveillance programs are tasked with identifying and documenting NTD-affected pregnancies and births, they are in a unique position to support recurrence prevention activities. METHODS: In 2015, we surveyed state and provincial birth defects surveillance programs to assess their NTD recurrence prevention activities. The online survey was sent to programs in 52 United States (U.S.) jurisdictions and all 13 provinces and territories in Canada. Findings were compared with a similar survey conducted in 2005 among U.S. programs. RESULTS: In 2015, of the 44 U.S. and Canadian surveillance programs that responded, only 9 programs (7 U.S. and 2 Canadian) reported currently having activities specifically directed toward preventing NTD recurrence. Compared with a 2005 survey of U.S. programs, the number of U.S. programs working on NTD recurrence prevention decreased by almost 50% (from 13 to 7 programs). CONCLUSION: The number of birth defects surveillance programs with NTD recurrence prevention activities has decreased over the past decade due to a range of barriers, most notably a lack of resources. However, while some recurrence prevention activities require part-time staff, other activities could be accomplished using minimal resources. Birth Defects Research (Part A) 106:875-880, 2016.© 2016 Wiley Periodicals, Inc.

Population-based microcephaly surveillance in the United States, 2009 to 2013: An analysis of potential sources of variation.

BACKGROUND: Congenital microcephaly has been linked to maternal Zika virus infection. However, ascertaining infants diagnosed with microcephaly can be challenging. METHODS: Thirty birth defects surveillance programs provided data on infants diagnosed with microcephaly born 2009 to 2013. The pooled prevalence of microcephaly per 10,000 live births was estimated overall and by maternal/infant characteristics. Variation in prevalence was examined across case finding methods. Nine programs provided data on head circumference and conditions potentially contributing to microcephaly. RESULTS: The pooled prevalence of microcephaly was 8.7 per 10,000 live births. Median prevalence (per 10,000 live births) was similar among programs using active (6.7) and passive (6.6) methods; the interdecile range of prevalence estimates was wider among programs using passive methods for all race/ethnicity categories except Hispanic. Prevalence (per 10,000 live births) was lowest among non-Hispanic Whites (6.5) and highest among non-Hispanic Blacks and Hispanics (11.2 and 11.9, respectively); estimates followed a U-shaped distribution by maternal age with the highest prevalence among mothers <20 years (11.5) and ≥40 years (13.2). For gestational age and birth weight, the highest prevalence was among infants <32 weeks gestation and infants <1500 gm. Case definitions varied; 41.8% of cases had an HC ≥ the 10th percentile for sex and gestational age. CONCLUSION: Differences in methods, population distribution of maternal/infant characteristics, and case definitions for microcephaly can contribute to the wide range of observed prevalence estimates across individual birth defects surveillance programs. Addressing these factors in the setting of Zika virus infection can improve the quality of prevalence estimates. Birth Defects Research (Part A) 106:972-982, 2016. © 2016 Wiley Periodicals, Inc.