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Text
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Citation List Month
October 2016 List
Dublin Core
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Title
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Measuring And Communicating Meaningful Outcomes In Neonatology: A Family Perspective
Publisher
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Seminars In Perinatology
Date
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2016
Subject
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Parents; Neurodevelopmental Outcomes; Child; Composite End-points; Birth; Down-syndrome; Obstetrics & Gynecology; Extremely Preterm Infants; Of-life Decisions; Pediatrics; Gestational Age
Extreme Prematurity; Congenital Anomalies; Neonatal Intensive Care Unit; Life-sustaining Interventions; End-of-life Decision Making; Disability; Screening; Palliative Care; Family-centered Care; Communication; Empathy
Creator
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Annie Janviera; Barbara Farlow; Jason Baardsnesf; Rebecca Pearceg; Keith J Barringtona
Description
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Abstract
Medium- and long-term outcomes have been collected and described among survivors of neonatal intensive care units for decades, for a number of purposes: (1) quality control within units, (2) comparisons of outcomes between NICUs, (3) clinical trials (whether an intervention improves outcomes), (4) end-of-life decision-making, (5) to better understand the effects of neonatal conditions and/or interventions on organs and/or long-term health, and finally (6) to better prepare parents for the future. However, the outcomes evaluated have been selected by investigators, based on feasibility, availability, cost, stability, and on what investigators consider to be important. Many of the routinely measured outcomes have major limitations: they may not correlate well with long-term difficulties, they may artificially divide continuous outcomes into dichotomous ones, and may have no clear relationship with quality of life and functioning of children and their families. Several investigations, such as routine term cerebral resonance imaging for preterm infants, have also not yet been shown to improve the outcome of children nor their families. In this article, the most common variables used in neonatology as well as some variables which are rarely measured but may be of equal importance for families are presented. The manner in which these outcomes are communicated to families will be examined, as well as recommendations to optimize communication with parents.
Abbreviations
BPD, bronchopulmonary dysplasia; BSID, Bayley Scales of Infant Development; GA, gestational age; NDI, neurodevelopmental impairment; NICU, neonatal intensive care unit; ROP, retinopathy of prematurity
Keywords
Extreme prematurity; Congenital anomalies; Neonatal intensive care unit; Life-sustaining interventions; End-of-life decisions; Disability; Screening; Palliative care; Family-centered care; Communication; Empathy
Identifier
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http://dx.doi.org/10.1053/j.semperi.2016.09.009
Rights
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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
Annie Janviera
Barbara Farlow
Birth
Child
Communication
Composite End-points
Congenital Anomalies
Disability
Down-syndrome
Empathy
End-of-life Decision Making
Extreme Prematurity
Extremely Preterm Infants
Family-centered Care
Gestational Age
Jason Baardsnesf
Keith J Barringtona
Life-sustaining Interventions
Neonatal Intensive Care Unit
Neurodevelopmental Outcomes
Obstetrics & Gynecology
October 2016 List
Of-life Decisions
Palliative Care
Parents
Pediatrics
Rebecca Pearceg
Screening
Seminars in Perinatology