NEOREG : design and implementation of an online neonatal registration system to access, follow and analyse data of newborns with congenital cytomegalovirus infection

Today's registration of newborns with congenital cytomegalovirus (cCMV) infection is still performed on paper-based forms in Flanders, Belgium. This process has a large administrative impact. It is imortant that all screening tests are registered to have a complete idea of the impact of cCMV. Although these registrations are usable in computerised data analysis, these data are not available in a format to perform electronic processing. An online Neonatal Registry (NEOREG) System was designed and developed to access, follow and analyse the data of newborns remotely. It allows patients' diagnostic registration and treatment follow-up through a web interface and uses document forms in Portable Document Format (PDF), which incorporate all the elements from the existing forms. Forms are automatically processed to structured EHRs. Modules are included to perform statistical analysis. The design was driven by extendibility, security and usability requirements. The website load time, throughput and execution time of data analysis were evaluated in detail. The NEOREG system is able to replace the existing paper-based CMV records

SCAMP:standardised, concentrated, additional macronutrients, parenteral nutrition in very preterm infants: a phase IV randomised, controlled exploratory study of macronutrient intake, growth and other aspects of neonatal care

<p>Abstract</p> <p>Background</p> <p>Infants born <29 weeks gestation are at high risk of neurocognitive disability. Early postnatal growth failure, particularly head growth, is an important and potentially reversible risk factor for impaired neurodevelopmental outcome. Inadequate nutrition is a major factor in this postnatal growth failure, optimal protein and calorie (macronutrient) intakes are rarely achieved, especially in the first week. Infants <29 weeks are dependent on parenteral nutrition for the bulk of their nutrient needs for the first 2-3 weeks of life to allow gut adaptation to milk digestion. The prescription, formulation and administration of neonatal parenteral nutrition is critical to achieving optimal protein and calorie intake but has received little scientific evaluation. Current neonatal parenteral nutrition regimens often rely on individualised prescription to manage the labile, unpredictable biochemical and metabolic control characteristic of the early neonatal period. Individualised prescription frequently fails to translate into optimal macronutrient delivery. We have previously shown that a standardised, concentrated neonatal parenteral nutrition regimen can optimise macronutrient intake.</p> <p>Methods</p> <p>We propose a single centre, randomised controlled exploratory trial of two standardised, concentrated neonatal parenteral nutrition regimens comparing a standard macronutrient content (maximum protein 2.8 g/kg/day; lipid 2.8 g/kg/day, dextrose 10%) with a higher macronutrient content (maximum protein 3.8 g/kg/day; lipid 3.8 g/kg/day, dextrose 12%) over the first 28 days of life. 150 infants 24-28 completed weeks gestation and birthweight <1200 g will be recruited. The primary outcome will be head growth velocity in the first 28 days of life. Secondary outcomes will include a) auxological data between birth and 36 weeks corrected gestational age b) actual macronutrient intake in first 28 days c) biomarkers of biochemical and metabolic tolerance d) infection biomarkers and other intravascular line complications e) incidence of major complications of prematurity including mortality f) neurodevelopmental outcome at 2 years corrected gestational age</p> <p>Trial registration</p> <p>Current controlled trials: <a href="http://www.controlled-trials.com/ISRCTN76597892">ISRCTN76597892</a>; EudraCT Number: 2008-008899-14</p

Parent Perceptions of Infant Symptoms at End-of-Life in the NICU

Purpose and Significance: Despite significant technological advances, many infants admitted to the neonatal intensive care unit (NICU) do not survive. Limited research has focused on symptoms infants may experience as they approach end-of-life. The purpose of this study was to examine concordance in infant symptom identification between medical record and parental report. Conceptual Framework: The Framework for a Good Neonatal Death was used to guide this study. This framework includes the interaction of three domains: infant, parents, and nurses that may result in an improved experience at end-of-life. Symptom identification and parent perceptions are important concepts included within these domains. Method: 433 parents (248 mothers, 185 fathers) of infants who died in the NICU between 2009 and 2014 were invited to participate. Following informed consent, parents of 40 infants [40 mothers (M age = 33 years), 27 fathers (M age = 37 years)] reported on the presence of symptoms during the last week of their infant’s life. Medical record reviews were also completed for each infant. Parent survey and chart data were compared for six symptoms for which there was overlapping data: pain, agitation, respiratory distress, feeding intolerance, seizures, and lethargy. Results: Parents identified several symptoms (Mother M =2.8, Father M = 2.6, range = 1-5) with pain, agitation, and respiratory distress most commonly endorsed. Within the 27 parental dyads, mothers reported agitation significantly more than fathers, while fathers reported seizures significantly more than mothers. Comparisons between the medical record and parental report of symptoms demonstrated that both parents reported seizures more often than documented in the medical record. Parents reported frequencies similar to the chart for the presence of pain, agitation, respiratory distress, feeding intolerance, and lethargy. Conclusions: Parents demonstrate awareness of the infant’s well-being at end-of-life which closely matches medical staff documentation, however perceptions may differ between parents. Parent perceptions of infant symptom burden likely plays an important role in decision-making regarding treatment. Future research is needed to further understand parents’ views of symptom management and potential suffering as it relates to end-of-life care.The Clinical and Translational Research Intramural Funding Program at Nationwide Children's HospitalA three-year embargo was granted for this item.Academic Major: Nursin

OntONeo: The Obstetric and Neonatal Ontology

This paper presents the Obstetric and Neonatal Ontology (OntONeo). This ontology has been created to provide a consensus representation of salient electronic health record (EHR) data and to serve interoperability of the associated data and information systems. More generally, it will serve interoperability of clinical and translational data, for example deriving from genomics disciplines and from clinical trials. Interoperability of EHR data is important to ensuring continuity of care during the prenatal and postnatal periods for both mother and child. As a strategy to advance such interoperability we use an approach based on ontological realism and on the ontology development principles of the Open Biomedical Ontologies Foundry, including reuse of reference ontologies wherever possible. We describe the structure and coverage domain of OntONeo and the process of creating and maintaining the ontology

Jefferson Digital Commons quarterly report: January-March 2020

This quarterly report includes: New Look for the Jefferson Digital Commons Articles COVID-19 Working Papers Educational Materials From the Archives Grand Rounds and Lectures JeffMD Scholarly Inquiry Abstracts Journals and Newsletters Master of Public Health Capstones Oral Histories Posters and Conference Presentations What People are Saying About the Jefferson the Digital Common

The development of social class sensitive proxies for infant mortality at the PCT level: An appraisal of candiate indicators for the commission for health improvement

The main aim of the work is to identify social class-sensitive proxies for infant mortality at Primary Care Trust level that could be used in the CHI performance ratings process for PCTs in 2003/4

Foundations for enhanced maternity data collection and reporting in Australia: national maternity data development project - stage 1

Findings from a project aimed at building a more comprehensive and consistent national data collection for maternal and perinatal health are presented in this report. Summary Investment in more comprehensive and consistent national data collection for maternal and perinatal morbidity and mortality was recommended by the Report of the maternity services review-a review conducted in 2008 by the then Australian Government Department of Health and Ageing in response to concerns that maternity care was not meeting the needs of all Australian women. Its findings led to the development of the National Maternity Services Plan (NMSP). The NMSP is a strategic national framework to guide policy and program development and reflects the joint understanding and commitment of health ministers in all jurisdictions. The National Maternity Data Development Project (NMDDP) was established in response to Action 4.1.5 of the NMSP: The Australian Governmentfunds the development of nationally consistent maternal and perinatal data collection. This report presents the findings of Stage 1 of the NMDDP which was conducted between May 2011 and June 2013, under the expert guidance of a project advisory group and with extensive stakeholder consultation. Major components included: identifying national information needs for maternity data and assessing options to meet these needs through enhanced data collection and reporting conducting a range of data development activities, including developing a classification system for models of maternity care reaching agreement on the national requirements for maternal mortality reporting, including developing a standardised data collection form investigating issues with collecting and reporting national perinatal mortality data. One outcome of the project has been an agreed set of priority data items for improving national data collection and reporting. These data items fall into three main categories: improvement of maternal morbidity data items (such as diabetes and hypertension) that are currently inconsistently collected across Australia addition of data items relating to lifestyle and risk factors in the antenatal period, including obesity and maternal mental health addition of data items on indications for caesarean section and other interventions, reflecting a need for consistent and accurate information about interventions before and during labour. Another outcome is the development of the Maternity Care Classification System (MaCCS) to classify the diverse range of models of maternity care in Australia. Once implemented, this system is designed to support analysis of outcomes of maternity care provided in different ways. Stage 1 of the NMDDP also involved in-depth examination of the current collection of data on maternal mortality. While maternal deaths are rare in Australia, they are still an important indicator of the quality of maternity services and obstetric care. A national report on maternal mortality in Australia for 2006-2010 will be published in 2014. A second stage of the NMDDP has now begun and will focus on continuing the development of priority data items and of the MaCCS, extending maternal mortality reporting work, developing methods to better capture and report on national perinatal mortality, and providing greater access to maternal and perinatal data through web tools