1
40
5
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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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June 2022 List
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 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2022.0033" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2022.0033</a>
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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Defining Neonatal Serious Illness
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
definition; neonatal; palliative care; serious illness
Creator
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Guttmann K; Kelley A; Weintraub A; Boss R
Description
An account of the resource
Background: One major challenge to the conduct of rigorous neonatal palliative care research is the lack of robust universally agreed upon definitions of key concepts central to pediatric and neonatal palliative care. Objective: We sought to define neonatal serious illness as a foundational concept for neonatal palliative care. Design: Survey study. Setting/Subjects: Practitioners in the United States with expertise in neonatal serious illness. Measurements: Participants ranked 15 components according to how important each would be to include in a conceptual definition of neonatal serious illness. Based on rankings and free text responses, a working definition was created and a follow-up survey was circulated. Participants then ranked the extent to which the proposed definition comprehensively defines neonatal serious illness. The definition was further refined based on responses to the second survey. Results: Eighty experts responded to our first survey. Definition components ranked as most important included "high risk of short term mortality" and "results in shortened lifespan." Analysis of free text responses revealed additional components viewed as important. We developed the following conceptual definition: "Neonatal serious illness 1) carries a high risk of short term mortality OR lifelong medical complexity with probable shortened lifespan, 2) may involve substantial prognostic uncertainty (especially in regard to neurodevelopment) that complicates medical decision-making, and 3) significantly impacts the patient and family's life now or in the future with strain related to treatments and care." Conclusion: We believe our definition of neonatal serious illness will facilitate future study essential to the advancement of care for this population.
Identifier
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<a href="http://doi.org/10.1089/jpm.2022.0033" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0033</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).
2022
April 2022 List
Boss R
definition
Guttmann K
Journal of Palliative Medicine
Kelley A
Neonatal
Palliative Care
Serious Illness
Weintraub A
-
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
Backlog
URL Address
<a href="http://doi.org/10.1097/PCC.0000000000000209" target="_blank" rel="noreferrer">http://doi.org/10.1097/PCC.0000000000000209</a>
Dublin Core
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Title
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Integrating palliative care into the PICU: a report from the Improving Palliative Care in the ICU Advisory Board
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
An entity primarily responsible for making the resource
Boss R; Nelson JE; Weissman DE; Campbell M; Curtis Randall; Frontera J; Gabriel M; Lustbader DR; Mosenthal A; Mulkerin C; Puntillo KA; Ray DE; Bassett R; Brasel K; Hays R
Description
An account of the resource
OBJECTIVE: This review highlights benefits that patients, families and clinicians can expect to realize when palliative care is intentionally incorporated into the PICU. DATA SOURCES: We searched the MEDLINE database from inception to January 2014 for English-language articles using the terms "palliative care" or "end of life care" or "supportive care" and "pediatric intensive care." We also hand-searched reference lists and author files and relevant tools on the Center to Advance Palliative Care website. STUDY SELECTION: Two authors (physicians with experience in pediatric intensive care and palliative care) made final selections. DATA EXTRACTION: We critically reviewed the existing data and tools to identify strategies for incorporating palliative care into the PICU. DATA SYNTHESIS: The Improving Palliative Care in the ICU Advisory Board used data and experience to address key questions relating to: pain and symptom management, enhancing quality of life, communication and decision-making, length of stay, sites of care, and grief and bereavement. CONCLUSIONS: Palliative care should begin at the time of a potentially life-limiting diagnosis and continue throughout the disease trajectory, regardless of the expected outcome. Although the PICU is often used for short term postoperative stabilization, PICU clinicians also care for many chronically ill children with complex underlying conditions and others receiving intensive care for prolonged periods. Integrating palliative care delivery into the PICU is rapidly becoming the standard for high quality care of critically ill children. Interdisciplinary ICU staff can take advantage of the growing resources for continuing education in pediatric palliative care principles and interventions.
2014-10
Identifier
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<a href="http://doi.org/10.1097/PCC.0000000000000209" target="_blank" rel="noreferrer">10.1097/PCC.0000000000000209</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).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Bassett R
Boss R
Brasel K
Campbell M
Curtis Randall
Frontera J
Gabriel M
Hays R
Journal Article
Lustbader DR
Mosenthal A
Mulkerin C
Nelson JE
Pediatric Critical Care Medicine
Puntillo KA
Ray DE
Weissman DE
-
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
February 2019 List
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
February 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.417" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.417</a>
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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Neonatal Palliative Care in the United States Deep South: Exploration of Patterns of Care and Health Disparities
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
infant; newborn; Mississippi; terminal care; palliative therapy; major clinical study; neonatal intensive care unit; conference abstract; medical record review; human; child; female; male; controlled study; resuscitation; statistics; chi square test; Alabama; health disparity; Louisiana; race
Creator
An entity primarily responsible for making the resource
Currie E; Boss R; Wolfe J; Dionne-Odom JN; Ejem D; Bakitas M
Description
An account of the resource
Background: In 2013, 23,446 infants died in the U.S.. For infants hospitalized in the neonatal intensive care unit (NICU), advances in medicine have prolonged the lives of many infants who would not have previously survived, resulting in complex clinical scenarios that would benefit from the integration of pediatric palliative care (PPC). PPC is an interdisciplinary specialty that aims to provide the best possible quality of life for seriously ill infants and their families and involves comprehensive treatment of suffering. However, PPC is often underutilized in the NICU, integrated too late in the illness for the patient and family to fully benefit from PPC, or avoided completely. Access to palliative care in the U.S. varies across regions, with limited access to PPC in the Deep South. However, patterns of neonatal palliative care and the extent of disparities within neonatal PPC throughout the Deep South is unknown.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.417" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.417</a>
2018
Alabama
Bakitas M
Boss R
Chi Square Test
Child
conference abstract
Controlled Study
Currie E
Dionne-Odom JN
Ejem D
February 2019 List
Female
health disparity
Human
Infant
Journal of Pain and Symptom Management
Louisiana
Major Clinical Study
Male
Medical Record Review
Mississippi
Neonatal Intensive Care Unit
Newborn
Palliative Therapy
race
Resuscitation
Statistics
Terminal Care
Wolfe J
-
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
April 2023 List
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
April List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.01.025" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.01.025</a>
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
Patterns of Pediatric Palliative and End-Of-Life Care in Neonatal Intensive Care Patients in the Southern U.S
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Terminal Care; Infant Newborn; end-of-life care; pediatric palliative care; Neonatal intensive care; intensity of care
Creator
An entity primarily responsible for making the resource
Currie ER; Wolfe J; Boss R; Johnston EE; Paine C; Perna SJ; Buckingham S; KcKillip KM; Li P; Dionne-Odom JN; Ejem D; Morvant A; Nichols C; Bakitas MA
Description
An account of the resource
OBJECTIVE: Describe pediatric palliative care (PPC) patterns and treatment intensity during the last 48 hours of life among neonatal intensive care unit (NICU) patients in the Southern U.S. who received specialized PPC. DESIGN: Retrospective cohort analysis SETTING/ SUBJECTS: Infants who received PPC consultation in the NICU before death in two NICUs (in Alabama and Mississippi) from 2009-2017 (n=195). MEASUREMENTS: Medical record abstraction included: clinical characteristics of NICU infants, palliative and end-of-life care characteristics, patterns of PPC, and intensive medical treatments in the last 48 hours of life. RESULTS: The sample was racially (48.2% Black) and geographically (35.4% rural) diverse. Most infants died after withdrawal of life-sustaining interventions (58%) and had do not attempt resuscitation orders documented (75.9%); very few infants enrolled in hospice (6.2%). Initial PPC consult occurred a median of 13 days after admission and a median of 17 days before death. Infants with a primary diagnosis of genetic or congenital anomaly received earlier PPC consultation (p= 0.02) compared to other diagnoses. In the last 48 hours of life, NICU patients received intensive interventions including mechanical ventilation (81.5%), CPR (27.7%) and surgeries or invasive procedures (25.1%). Black infants were more likely to receive CPR compared to White infants (p= 0.04). CONCLUSION: Overall, PPC consultation occurred late in NICU hospitalizations, infants received high-intensity medical interventions in the last 48 hours of life, and there are disparities in intensity of treatment interventions at end of life. Further research is needed to explore if these patterns of care reflect parent preferences and goal concordance.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2023.01.025" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.01.025</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).
2023
April List 2023
Bakitas MA
Boss R
Buckingham S
Currie ER
Dionne-Odom JN
Ejem D
End-of-life Care
Infant Newborn
intensity of care
Johnston EE
Journal of Pain and Symptom Management
KcKillip KM
Li P
Morvant A
neonatal intensive care
Nichols C
Paine C
Pediatric Palliative Care
Perna SJ
Terminal Care
Wolfe J
-
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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2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.3390/cancers13061419" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/cancers13061419</a>
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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Triggers for Palliative Care Referral in Pediatric Oncology
Publisher
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Cancers
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Oncology
Creator
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Cuviello A; Yip C; Battles H; Wiener L; Boss R
Description
An account of the resource
Palliative care (PC) integration into the care of pediatric oncology patients is growing in acceptance and has been shown to improve the quality of life of children with cancer. Yet timing for referrals and referral practices remain inconsistent, and PC remains underutilized. We conducted a retrospective chart review of pediatric oncology patients treated at an academic institution between January 2015 to November 2018. Data collected included demographics, disease and therapy characteristics, and consultation notes, specifically documenting existence of predetermined "high yield triggers" for PC consultation. Among 931 eligible patients the prevalence of PC consultation was 5.6% while approximately 94% of patients had at least 1 trigger for PC consultation. The triggers that more often resulted in PC consultation included: symptom management needs (98%; n = 51) high-risk disease (86%; n = 45), poor prognosis (83%; n = 43), multiple lines of therapy (79%; n = 41) and a documented ICU admission (67%; n = 35). Our findings suggest that the high yield triggers for palliative care consultation that pediatric oncologists identify as important are not translating into practice; incorporating these triggers into a screening tool may be the next step to improve early PC integration.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/cancers13061419" target="_blank" rel="noreferrer noopener">10.3390/cancers13061419</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).
2021
2021 Special Edition - Oncology
Battles H
Boss R
Cancers
Cuviello A
Oncology
Wiener L
Yip C