Birth defects surveillance : a manual for programme managers

Second edition.Congenital anomalies, also known as birth defects, are structural or functional abnormalities, including metabolic disorders, which are present at birth. Congenital anomalies are a diverse group of disorders of prenatal origin, which can be caused by single-gene defects, chromosomal disorders, multifactorial inheritance, environmental teratogens or micronutrient malnutrition.This manual is intended to serve as a tool for the development, implementation and ongoing improvement of a congenital anomalies surveillance programme, particularly for countries with limited resources. The focus of the manual is on population-based and hospital-based surveillance programmes. Some countries might not find it feasible to begin with the development of a population-based programme. Therefore, the manual covers the methodology needed for the development of both population-based and hospital-based surveillance programmes. Further, although many births in predominantly low- and middle-income countries (LMICs) occur outside of hospitals, some countries with limited resources might choose to start with a hospital-based surveillance programme and expand it later into one that is population-based. Any country wishing to expand its current hospital-based programme into a population-based programme, or to begin the initial development of a population-based system, should find this manual helpful in reaching its goal.This manual provides selected examples of congenital anomalies (see Appendix A). These anomalies are severe enough that many would probably be captured during the first few days following birth. While a number of the anomalies listed are external and easily identified by physical exam, others are internal and typically require more advanced diagnostic evaluations such as imaging. However, because of their severity and frequency, all these selected conditions have significant public health impact, and for some there is a potential for primary prevention. Nevertheless, these are just suggestions; countries might choose to monitor a subset of these conditions or add other congenital anomalies to meet their needs.WHO thanks the United States Centers for Disease Control and Prevention, especially the National Center on Birth Defects and Developmental Disabilities, for providing financial support for the publication of this manual as part of the cooperative agreement 5 E11 DP002196, Global prevention of noncommunicable diseases and promotion of health. Supported in part by contract from Task Force for Global Health to the International Center on Birth Defects (ICBD) of the ICBDSR. We gratefully acknowledge and thank the United States Agency for International Development for providing financial support for this work.Suggested citation. Birth defects surveillance: a manual for programme managers, second edition. Geneva: World Health Organization; 2020. Licence: CC BY-NC-SA 3.0 IGO.9789240015395 (\u200eelectronic version)\u200e9789240015401 (\u200eprint version)\u200eBirth-Defects-Surveillance-A-Manual-for-Programme-Managers-2020Manual-P.pdfAcknowledgements -- Financial support -- Abbreviations -- Objectives of the manual -- 1. Surveillance of congenital anomalies -- 2. Planning activities and tools -- 3. Approaches to surveillance -- 4. Dianosing congenital anomalies -- 5. Congenital infectious syndromes -- 6. Coding and diagnosis -- 7. Primer on data quality in birth defects surveillance.2020cooperative agreement 5 E11 DP002196891

Admissions to a Low-Resource Neonatal Unit in Malawi Using a Mobile App and Dashboard: A 1-Year Digital Perinatal Outcome Audit

Introduction: Understanding the extent and cause of high neonatal deaths rates in Sub-Saharan Africa is a challenge, especially in the presence of poor-quality and inaccurate data. The NeoTree digital data capture and quality improvement system has been live at Kamuzu Central Hospital, Neonatal Unit, Malawi, since April 2019. Objective: To describe patterns of admissions and outcomes in babies admitted to a Malawian neonatal unit over a 1-year period via a prototype data dashboard. Methods: Data were collected prospectively at the point of care, using the NeoTree app, which includes digital admission and outcome forms containing embedded clinical decision and management support and education in newborn care according to evidence-based guidelines. Data were exported and visualised using Microsoft Power BI. Descriptive and inferential analysis statistics were executed using R. Results: Data collected via NeoTree were 100% for all mandatory fields and, on average, 96% complete across all fields. Coverage of admissions, discharges, and deaths was 97, 99, and 91%, respectively, when compared with the ward logbook. A total of 2,732 neonates were admitted and 2,413 (88.3%) had an electronic outcome recorded: 1,899 (78.7%) were discharged alive, 12 (0.5%) were referred to another hospital, 10 (0.4%) absconded, and 492 (20%) babies died. The overall case fatality rate (CFR) was 204/1,000 admissions. Babies who were premature, low birth weight, out born, or hypothermic on admission, and had significantly higher CFR. Lead causes of death were prematurity with respiratory distress (n = 252, 51%), neonatal sepsis (n = 116, 23%), and neonatal encephalopathy (n = 80, 16%). The most common perceived modifiable factors in death were inadequate monitoring of vital signs and suboptimal management of sepsis. Two hundred and two (8.1%) neonates were HIV exposed, of whom a third [59 (29.2%)] did not receive prophylactic nevirapine, hence vulnerable to vertical infection. Conclusion: A digital data capture and quality improvement system was successfully deployed in a low resource neonatal unit with high (1 in 5) mortality rates providing and visualising reliable, timely, and complete data describing patterns, risk factors, and modifiable causes of newborn mortality. Key targets for quality improvement were identified. Future research will explore the impact of the NeoTree on quality of care and newborn survival

Improving maternal and infant health: a quality improvement initiative to recognize postpartum depression in the neonatal intensive care unit.

BACKGROUND: While postpartum depression (PPD) is a significant problem in the postpartum population, emerging literature suggests that PPD is disproportionately concentrated and underdiagnosed among mothers of infants admitted to the neonatal intensive care unit (NICU). PURPOSE: The purpose of this project was to institute a PPD screening protocol within a Level III NICU to identify mothers exhibiting signs of distress and initiate social work referrals. METHODS: A quality improvement project implemented utilizing the Plan-Do-Study-Act (PDSA) framework and a pre-and-posttest design. INTERVENTION: Staff education regarding PPD symptoms and the project’s protocol occurred via electronic means. Mothers of NICU infants who remained admitted at day of life 14 were screened with the Edinburg Postnatal Depression Scale (EPDS). Mothers scoring greater than or equal to 10 on the EPDS received a social work consult. RESULTS: Compliance with the completion of the pre-and-posttest assessment was 64%. The increased scores of the staff knowledge and perception of PPD assessment reached statistical significance (pr=.093). A weak negative correlation was found between the maximum EPDS score and length of stay (LOS) (r=-.213). Neither correlation reached statistical significance (p=.705, p=.382, respectively). DISCUSSION: High compliance rates within the three arms of the screening protocol demonstrate the feasibility of PPD screening in the NICU. Keywords: postpartum depression, neonatal intensive care unit, NICU, mother, screening, Edinburgh Postnatal Depression Scale, referra

Leveraging Artificial Intelligence to Improve Provider Documentation in Patient Medical Records

Clinical documentation is at the center of a patient\u27s medical record; this record contains all the information applicable to the care a patient receives in the hospital. The practice problem addressed in this project was the lack of clear, consistent, accurate, and complete patient medical records in a pediatric hospital. Although the occurrence of incomplete medical records has been a known issue for the project hospital, the issue was further intensified following the implementation of the 10th revision of International Classification of Diseases (ICD-10) standard for documentation, which resulted in gaps in provider documentation that needed to be filled. Based on this, the researcher recommended a quality improvement project and worked with a multidisciplinary team from the hospital to develop an evidence-based documentation guideline that incorporated ICD-10 standard for documenting pediatric diagnoses. Using data generated from the guideline, an artificial intelligence (AI) was developed in the form of best practice advisory alerts to engage providers at the point of documentation as well as augment provider efforts. Rosswurm and Larrabee\u27s conceptual framework and Kotter\u27s 8-step change model was used to develop the guideline and design the project. A descriptive data analysis using sample T-test significance indicated that financial reimbursement decreased by 25%, while case denials increased by 28% after ICD-10 implementation. This project promotes positive social change by improving safety, quality, and accountability at the project hospital

Integrated out-of-hours care arrangements in England: observational study of progress towards single call access via NHS Direct and impact on the wider health system

Objectives: To assess the extent of service integration achieved within general practice cooperatives and NHS Direct sites participating in the Department of Health’s national “Exemplar Programme” for single call access to out-of-hours care via NHS Direct. To assess the impact of integrated out-of-hours care arrangements upon general practice cooperatives and the wider health system (use of emergency departments, 999 ambulance services, and minor injuries units). Design: Observational before and after study of demand, activity, and trends in the use of other health services. Setting: Thirty four English general practice cooperatives with NHS Direct partners (“exemplars”) of which four acted as “case exemplars”. Also 10 control cooperatives for comparison. Main Outcome Measures: Extent of integration achieved (defined as the proportion of hours and the proportion of general practice patients covered by integrated arrangements), patterns of general practice cooperative demand and activity and trends in use of the wider health system in the first year. Results: Of 31 distinct exemplars 21 (68%) integrated all out-of-hours call management by March 2004. Nine (29%) established single call access for all patients. In the only case exemplar where direct comparison was possible, cooperative nurse telephone triage before integration completed a higher proportion of calls with telephone advice than did NHS Direct afterwards (39% v 30%; p<0.0001). The proportion of calls completed by NHS Direct telephone advice at other sites was lower. There is evidence for transfer of demand from case exemplars to 999 ambulance services. A downturn in overall demand for care seen in two case exemplars was also seen in control sites. Conclusion: The new model of out-of-hours care was implemented in a variety of settings across England by new partnerships between general practice cooperatives and NHS Direct. Single call access was not widely implemented and most patients needed to make at least two telephone calls to contact the service. In the first year, integration may have produced some reduction in total demand, but this may have been accompanied by shifts from one part of the local health system to another. NHS Direct demonstrated capability in handling calls but may not currently have sufficient capacity to support national implementation

Guidelines for conducting birth defects surveillance

"In January of 1999, the National Birth Defects Prevention Network (NBDPN) established a Surveillance Guidelines and Standards Committee (SGSC) in order to develop and promote the use of standards and guidelines for birth defects surveillance programs in the United States. This set of guidelines is designed to serve as an important first step in the documentation of this process and as the vehicle for dissemination of the committee's findings. The Guidelines for Conducting Birth Defects Surveillance (henceforth referred to as The Surveillance Guidelines) were developed with three major long-term objectives in mind: To improve the quality of state birth defects surveillance data, including accuracy, comparability, completeness, and timeliness; To enhance the utility of state birth defects surveillance data for research on the distribution and etiology of birth defects; To encourage and promote the use of state birth defects surveillance data for the purposes of linking affected children with services and evaluation of those services. The technical guidelines that make up this document provide a way of improving the quality of birth defects surveillance data, which in turn enhances their use in support of the latter two objectives. Fundamental to quality is ensuring that procedures for all aspects of data definition, collection, management, and analysis are established and followed. Because state-based surveillance systems operate with different objectives and data needs, it is clear that, with respect to procedures and standards, 'one size does not fit all.' It is also clear, however, that common guidelines can provide a basis for the development of system-specific operating procedures and supporting manuals." - p. iIntroduction -- -- Chapter 1. The Whys and Hows of Birth Defects Surveillance - Using Data -- -- Chapter 2. Legislation -- Appendix 2.1. Sample State Legislation -- Appendix 2.2. Table of Birth Defects Legislation -- Appendix 2.3. Definitions Used to Determine Covered Entity Status Under the Privacy Rule -- Appendix 2.4. Office of Civil Rights (OCR) HIPAA Privacy Regulation Text -- -- Chapter 3.Case Definition -- Appendix 3.1. Birth Defects Included in the Case Definition of the National Birth Defects Prevention Network -- Appendix 3.2. NBDPN Abstractor's Instructions -- Appendix 3.3. Examples of Conditions Considered to Be Minor Anomalies -- Appendix 3.4. Conditions Related to Prematurity in Infants Born at Less Than 36 Weeks Gestation -- -- Chapter 4. Data Variables -- Appendix 4.1. Descriptions of Minimum (Core) Data Variables -- Appendix 4.2. Descriptions of Recommended Data Variables -- -- Chapter 5. Classification and Coding -- Appendix 5.1. Texas Disease Index -- Appendix 5.2. 6-Digit CDC Codes (updated 8/2007) -- -- Chapter 6. Case Ascertainment Methods -- Appendix 6.1. Data Source Described in Detail - Vital Records -- Appendix 6.2. Data Source Described in Detail - Hospital Data Sets -- Appendix 6.3. Data Source Described in Detail - Hospital and Patient Services Logs -- Appendix 6.4. Data Source Described in Detail - Genetic Services -- -- Chapter 7. Data Quality Management -- Appendix 7.1. Data Sources Descriptive Assessment Tool -- -- Chapter 8. Statistical Methods -- -- Chapter 9. Data Management and Security -- -- Chapter 10. Data Collaboration and Dissemination through the NBDPN -- -- Chapter 11. Data Presentation -- Appendix 11.1. Data Suppression -- Appendix 11.2. Use of Geographic Information Systems (GIS) to Map Data -- Appendix 11.3. Data Users Matrix -- Appendix 11.4. What Type of Chart or Graph Should I Use?edited by Lowell E. Sever."June 2004."Support for development, production, and distribution of these guidelines was provided by the Birth Defects State Research Partnerships Team, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention.Title from title caption (viewed on Jan. 6, 2012).Mode of access: Internet from the CDC web site as an Acrobat .pdf file ((7.6 MB, 627 p.).System requirements: Adobe Acrobat Reader.Includes bibliographical references.Text in PDF format.National Birth Defects Prevention Network (NBDPN). Guidelines for Conducting Birth Defects Surveillance. Sever, LE, ed. Atlanta, GA: National Birth Defects Prevention Network, Inc., June 2004

Clarifying the lower incidence of birth defects in the midwest of Western Australia : A study using capture re-capture methodology

In April 2000 the Western Australian Birth Defects Registry held its 20th Anniversary Scientific Symposium to signify the first 20 years of the Birth Defects Registry in Western Australia. At the Symposium, significant trends and occurrences in birth defects within Western Australia over the past 20 years were addressed. One factor highlighted in the Registry\u27s 1980-1999 report was that birth defects were reported less frequently in rural regions compared with metropolitan areas. Data collected from the metropolitan area is considered by the Birth Defects Registry to be the most accurate. Therefore, incidence rates of birth defects in this area arc used as a benchmark for determining the incidence of birth defects throughout Western Australia. The aim of this study was to explore the lower incidence of birth defects in the Midwest of Western Australia compared with that of metropolitan Western Australia. The study investigated if the observed lower incidence of birth defects in the Midwest was due to case under reporting. The study target population included newborns whose mothers were Midwest residents at the time of their birth between the years of 1995 - 1999. A mixed methodological approach, combining capture-recapture and thematic analysis was used. The study was conducted in two phases. The first phase involved the collection of quantitative data. The potential target population in the Midwest consisted of 5066 births. A sample of 440 newborn case notes were selected randomly from the target population and accessed from client files held at Geraldton Regional Hospital. A record was made of any reportable birth defects. The result provided demographic and descriptive statistics, which were compared with data held by the Birth Defects Registry regarding the Midwest. This mode of sample collection is known as capture-recapture methodology. Comparison of data from the sample with data from the Registry was used to document the existence of discrepancies and to enable an ascertainment-adjusted analysis to be performed. To address the study\u27s aims, the ascertainment adjusted rate was compared with the rates occurring in the metropolitan area. In Phase 1, quantitative findings showed the lower incidence of birth defects diagnosed in infants during the newborn period in the Midwest of Western Australia was unlikely to be due to case under reporting. Possible factors contributing to the lower incidence of birth defects in the Midwest compared to the Metropolitan area were discussed. These include the lower maternal age of Midwest mothers, a higher Aboriginal population, study sample bias and case under-reporting beyond the newborn period. Full exploration of these issues, however, was outside the scope of this study and is an area for future research. The second phase of the study involved collection of qualitative data. Health professionals reporting birth defects in the Midwest were asked to participate in focus group interviews. Three groups of health professionals were targeted: general practitioners; midwives; and child health nurses. Interview responses were transcribed and indexed according to common themes and issues. This analysis provided insight into the cause of empirical findings and discrepancies, allowing for recommendations focused on improving and/or sustaining birth defect notification practices of health professionals in the Midwest of Western Australia. Findings showed that a knowledge deficit regarding the reporting of birth defects exists in targeted Midwest health professionals. Possible reasons for the knowledge deficit included high transfer rates of newborns affected by birth defects, uncertainty regarding the responsibility of birth defect reporting, limited use of birth defect notification cards by health professionals and the lack of ongoing education and promotion of birth defects in the Midwest Region. Study recommendations include further research to explore factors contributing to the lower incidence of birth defects in the Midwest, education and promotion regarding birth defects and the role of the Birth Defects Registry, amending and centralising birth defect notification cards, and legislating the reporting of birth defects in Western Australia

From data to action : CDC's public health surveillance for women, infants, and children (second edition)

The initial edition of Data to Action: CDC\u2019s Public Health Surveillance for Women, Infants and Children, published in 1994, was the first comprehensive description of the Centers for Disease Control\u2019s many surveillance and data system activities related to the health of women and children. It covered critical public health concerns, spanning the life cycle from infancy to reproductive-age women, with each chapter structured similarly so that differences and connections could be more easily discerned.Public health professionals have always been concerned with measuring health events across the life span. Maternal and child health surveillance captures data on reproductive health, pregnancy, birth, infancy, childhood, adolescence. Public health planners need to know the data that are available and how to use that information. In turn, public health data systems need to respond to the needs of stakeholders by providing and interpreting data that can be translated into appropriate action. The demand for such information is rapidly increasing in the public health community and will become even more critical in the face of emerging public health crises and emergency preparedness and response.This monograph is a step toward making the surveillance systems of the Centers for Disease Control and Prevention (CDC) more accessible to persons concerned with the health of women, infants, and children. It aims to note achievements from previous decades as well as identify new and ongoing challenges. Data needs evolve over time, and surveillance systems can adapt and respond to these challenges. This monograph offers health practitioners and planners at national, state, local and tribal levels a better appreciation of the uses and limitations of these surveillance systems, and enables us to think more critically about improvements in measuring the health of these populations.Data-To-Action_508.pdf2020897