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40
2
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Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Trisomy 18: A Survey Of Opinions, Attitudes, And Practices Of Neonatologists
Publisher
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American Journal Of Medical Genetics Part A
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
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Genetics & Heredity; Infant; Intervention
Attitudes; Management; Neonatology; Trisomy 18
Creator
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Jacobs AP; Subramaniam A; Tang Y; Philips JB; Biggio JR; Edwards RK; Robin NH
Description
An account of the resource
We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal anomalies and collected demographic information on participants, as well as their attitudes, and management choices given a series of vignettes beginning in the prenatal period. The survey was sent to 3,143 American Academy of Pediatrics Section on Neonatal-Perinatal Medicine members of which 409 (13%) completed the survey. While the response rate was rather low, our respondent pool was representative of the national neonatologist population. Respondents were predominately white (81%), married (88%), Christian (54%), had children (86%), and were pro-choice in terms of abortion (68%). Eighty-three percent (83%) of respondents thought that trisomy 18 is a lethal condition and 60% thought that treatment is futile. Seventy-five percent (75%) expected that the best neurodevelopmental outcome in the case of infant survival would be profound intellectual disability. Regarding neonatal care, 95% stated that they would recommend palliative care only. Ninety-five percent (95%) would never recommend or recommend only if asked full code resuscitation for a neonate with full trisomy 18, yet, 44% would comply partially or in full with a full code request for resuscitation measures. The demographic features that correlated most significantly with these responses were clinician race and years in practice. The attitudes toward and management of infants affected with trisomy 18 seem to be largely driven by parental attitudes and wishes.
Identifier
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DOI: 10.1002/ajmg.a.37807
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
American Journal of Medical Genetics Part A
Attitudes
Biggio JR
Edwards RK
Genetics & Heredity
Infant
Intervention
Jacobs AP
June 2016 List
Management
Neonatology
Philips JB
Robin NH
Subramaniam A
Tang Y
Trisomy 18
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2017 List
URL Address
<a href="http://doi.org/10.1002/ajmg.a.37807" target="_blank" rel="noreferrer">http://doi.org/10.1002/ajmg.a.37807</a>
Notes
<p>Jacobs, Adam P<br />Subramaniam, Akila<br />Tang, Ying<br />Philips, Joseph B 3rd<br />Biggio, Joseph R<br />Edwards, Rodney K<br />Robin, Nathaniel H</p>
;
<p>Using Smart Source Parsing<br />( (pp 2016. Date of Publication: 01 Oct 2016</p>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Trisomy 18: A survey of opinions, attitudes, and practices of neonatologists
Publisher
An entity responsible for making the resource available
American Journal Of Medical Genetics Part A
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Attitude Of Health Personnel; Health Care Surveys; Neonatologists/px [psychology]; Physician Attitude; Practice Patterns Physicians'; Trisomy 18; Trisomy/di [diagnosis]; Adult; Article; Attitude To Abortion; Caucasian; Christian; Chromosomes Human Pair 18; Clinical Practice; Correlation Analysis; Demography; Disease Management; Disease Severity; Family; Female; Fetus Malformation; Human; Humans; Intellectual Impairment; Male; Marriage; Medical Decision Making; Medical Society; Neonatologist; Newborn Care; Normal Human; Outcome Assessment (health Care); Palliative Care; Palliative Therapy; Parental Attitude; Prenatal Diagnosis; Priority Journal; Race Difference; Resuscitation; Survival Rate; Trisomy 18; United States
Creator
An entity primarily responsible for making the resource
Jacobs AP; Subramaniam A; Tang Y; Philips JB 3rd; Biggio JR; Edwards RK; Robin NH
Description
An account of the resource
We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal anomalies and collected demographic information on participants, as well as their attitudes, and management choices given a series of vignettes beginning in the prenatal period. The survey was sent to 3,143 American Academy of Pediatrics Section on Neonatal-Perinatal Medicine members of which 409 (13%) completed the survey. While the response rate was rather low, our respondent pool was representative of the national neonatologist population. Respondents were predominately white (81%), married (88%), Christian (54%), had children (86%), and were pro-choice in terms of abortion (68%). Eighty-three percent (83%) of respondents thought that trisomy 18 is a lethal condition and 60% thought that treatment is futile. Seventy-five percent (75%) expected that the best neurodevelopmental outcome in the case of infant survival would be profound intellectual disability. Regarding neonatal care, 95% stated that they would recommend palliative care only. Ninety-five percent (95%) would never recommend or recommend only if asked full code resuscitation for a neonate with full trisomy 18, yet, 44% would comply partially or in full with a full code request for resuscitation measures. The demographic features that correlated most significantly with these responses were clinician race and years in practice. The attitudes toward and management of infants affected with trisomy 18 seem to be largely driven by parental attitudes and wishes. � 2016 Wiley Periodicals, Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ajmg.a.37807" target="_blank" rel="noreferrer">10.1002/ajmg.a.37807</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adult
American Journal of Medical Genetics Part A
Article
Attitude Of Health Personnel
Attitude To Abortion
Biggio JR
Caucasian
Christian
Chromosomes Human Pair 18
Clinical Practice
Correlation Analysis
December 2017 List
Demography
Disease Management
Disease Severity
Edwards RK
Family
Female
Fetus Malformation
Health Care Surveys
Human
Humans
Intellectual Impairment
Jacobs AP
Male
Marriage
Medical Decision Making
Medical Society
Neonatologist
Neonatologists/px [psychology]
Newborn Care
Normal Human
Outcome Assessment (health Care)
Palliative Care
Palliative Therapy
Parental Attitude
Philips JB 3rd
Physician Attitude
Practice Patterns Physicians'
Prenatal Diagnosis
Priority Journal
Race Difference
Resuscitation
Robin NH
Subramaniam A
Survival Rate
Tang Y
Trisomy 18
Trisomy/di [diagnosis]
United States