Dataset Information

Neonatal Ethics Teaching Program - Scenario-Oriented Learning in Ethics: Announcing the Diagnosis of Trisomy 21.

ABSTRACT: Introduction:Delivering unexpected news to families can lead to emotionally charged conversations that cause discomfort and feelings of ineffectiveness in pediatric postgraduate trainees. Although prenatal screening exists, over 80% of trisomy 21 diagnoses continue to be made postnatally to unsuspecting parents who report a desire for better communication from health care professionals when they first receive the news of their child's diagnosis. Recognizing this area for improvement as reported in the literature, as well as the expressed desire from fellows in the University of Ottawa neonatal-perinatal medicine program for additional protected time to preemptively practice such disclosures, this trisomy 21 Scenario-Oriented Learning in Ethics workshop was developed. Methods:During the workshop, trainees are introduced to an evidence-based communication framework that provides them with strategies to facilitate clear knowledge translation and promote rapport with families for this specific clinical scenario. Participants are divided into small groups and practice disclosing a trisomy 21 diagnosis to a standardized patient in the role of a new mother. Each small group is supported by two trained facilitators who are experts in delivering life-altering news. Results:The pilot workshop was completed by 21 postgraduate trainees from the University of Ottawa. Qualitative evaluations were overwhelmingly positive, with feedback indicating high levels of perceived usefulness for the workshop. Discussion:By preemptively practicing evidence-based communication, we hope to increase trainee confidence and preparation for trisomy 21 disclosures and improve parents' feelings regarding the quality of communication and support provided while receiving real-life trisomy 21 diagnoses.

SUBMITTER: Boggs S

PROVIDER: S-EPMC6338174 | biostudies-other | 2017 May

REPOSITORIES: biostudies-other

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Neonatal Ethics Teaching Program - Scenario-Oriented Learning in Ethics: Announcing the Diagnosis of Trisomy 21.

Boggs Samantha S Daboval Thierry T Ben Fadel Nadya N Moore Gregory G Ferretti Emanuela E

MedEdPORTAL : the journal of teaching and learning resources 20170505

<h4>Introduction</h4>Delivering unexpected news to families can lead to emotionally charged conversations that cause discomfort and feelings of ineffectiveness in pediatric postgraduate trainees. Although prenatal screening exists, over 80% of trisomy 21 diagnoses continue to be made postnatally to unsuspecting parents who report a desire for better communication from health care professionals when they first receive the news of their child's diagnosis. Recognizing this area for improvement as r ...[more]

PMID: 30800777

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Project description:A universal biomarker panel with the potential to predict high-risk pregnancies or adverse pregnancy outcome does not exist. Transcriptome analysis is a powerful tool to capture differentially expressed genes (DEG), which can be used as biomarker-diagnostic-predictive tool for various conditions in prenatal setting. In search of biomarker set for predicting high-risk pregnancies, we performed global expression profiling to find DEG in Ts21. Subsequently, we performed targeted validation and diagnostic performance evaluation on a larger group of case and control samples. Initially, transcriptomic profiles of 10 cultivated amniocyte samples with Ts21 and 9 with normal euploid constitution were determined using expression microarrays. Datasets from Ts21 transcriptomic studies from GEO repository were incorporated. DEG were discovered using linear regression modelling and validated using RT-PCR quantification on an independent sample of 16 cases with Ts21 and 32 controls. The classification performance of Ts21 status based on expression profiling was performed using supervised machine learning algorithm and evaluated using a leave-one-out cross validation approach. Global gene expression profiling has revealed significant expression changes between normal and Ts21 samples, which in combination with data from previously performed Ts21 transcriptomic studies, were used to generate a multi-gene biomarker for Ts21, comprising of 9 gene expression profiles. In addition to biomarker's high performance in discriminating samples from global expression profiling, we were also able to show its discriminatory performance on a larger sample set 2, validated using RT-PCR experiment (AUC=0.97), while its performance on data from previously published studies reached discriminatory AUC values of 1.00. Our results show that transcriptomic changes might potentially be used to discriminate trisomy of chromosome 21 in the prenatal setting. As expressional alterations reflect both, causal and reactive cellular mechanisms, transcriptomic changes may thus have future potential in the diagnosis of a wide array of heterogeneous diseases that result from genetic disturbances.

Dataset Information

Neonatal Ethics Teaching Program - Scenario-Oriented Learning in Ethics: Announcing the Diagnosis of Trisomy 21.

Publications

Neonatal Ethics Teaching Program - Scenario-Oriented Learning in Ethics: Announcing the Diagnosis of Trisomy 21.

Similar Datasets

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