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40
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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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March 2020 List
Text
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March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.339" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.339</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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Getting a Seat at the Table: An Iterative Development Process to Improve Available Benchmark Data for Pediatric Palliative Care Programs (S778)
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Journal of Pain and Symptom Management
Date
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2020
Subject
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administrative personnel; child; conference abstract; controlled study; District of Columbia; hospital patient; human; palliative therapy; perception; phase 1 clinical trial; program development; workflow
Creator
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Klick J; Humphrey L; Friebert S; Rogers M; Williams C
Description
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Objectives: * Describe a longitudinal, iterative, and cross-organizational design process. * Describe pediatric palliative care program structure and process measurement. * Create additional opportunities to expand the benchmark data available for Pediatric Hospice and Palliative Care program development. Original Research Background: Pediatric palliative care (PPC) has evolved dramatically over the last ten years. In many ways PPC services have become the standard of practice, effectively changing the paradigm of program development. Unfortunately, barriers remain for programs' ability to meet the clinical demand, including limited benchmark information to inform program development. While some data is available, PPC programs perceive the data as not specific or not applicable to PPC needs. This perception has facilitated low participation and a paucity of data. Research Objectives: In 2017, three PPC program directors undertook an iterative process to address this data challenge.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.339" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.339</a>
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).
2020
administrative personnel
Child
conference abstract
Controlled Study
District of Columbia
Friebert S
Hospital Patient
Human
Humphrey L
Journal of Pain and Symptom Management
Klick J
March 2020 List
Palliative Therapy
Perception
phase 1 clinical trial
Program Development
Rogers M
Williams C
workflow
-
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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2019 Oncology 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
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27713</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 palliative opportunities in pediatric patients with bone and soft tissue tumors
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; bone marrow; bone tumor; cancer patient; cancer recurrence; child; conference abstract; controlled study; death; disease exacerbation; do not resuscitate order; female; hospice; hospital admission; human; intensive care; major clinical study; male; palliative therapy; pediatric patient; phase 1 clinical trial; relapse; retrospective study; soft tissue tumor; solid malignant neoplasm; statistics
Creator
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Ebelhar J; Allen K; Wasilewski-Masker K; Brock K
Description
An account of the resource
Background: Pediatric patients with cancer have many opportunities for increased primary or specialty palliative care (PC). This is particularly true for patients with solid tumors who often have higher symptom burden and worse outcomes. However, how many opportunities, when they occur, and if these opportunities are correlated with disease or demographic variables are unknown. Objective(s): To define palliative opportunities within pediatric cancer, and explore howthese occur in patients with solid tumors. Design/Method: A priori, nine palliative opportunity categories were defined (disease progression and relapse, hospital admission for symptoms or social concerns, intensive care or marrow transplant admission, phase 1 trial or hospice enrollment, DNR status). A single-center retrospective review was conducted on patients aged 0-17 years at diagnosis with bone/soft tissue tumors who died from 1/1/12- 11/30/17. Demographic, disease, and treatment data was collected, and descriptive statistics were performed. Timing of opportunities was evaluated over quartiles from diagnosis to death. Result(s): Patients (n = 60) had a mean of nine (SD = 4) palliative opportunities. Number or type of opportunities did not differ by primary diagnosis or demographic variables. PC consulted on 18 patients (30%) a median of 14.0 months (IQR 25.0) after diagnosis, and 2.6 months (IQR 11.5) prior to death. Likelihood of PC consult did not differ by diagnosis or total opportunities. The opportunities that preceded PC consultwere progression/relapse (9/18), escalated hospital level of care (4/18), symptom admission (3/18), and end-oflife concerns (2/18). Hospicewas involved for 72% of patients. The majority of opportunities occurred in the last quartile of the disease course (median 5.0, IQR 5.0). Conclusion(s): Patients with solid tumors incur many events warranting psychosocial or palliative support, which increase toward the end-of-life. Mean reported opportunities is likely a minimum due to stringent collection methods. No palliative opportunity or demographic variable was associated with PC consultation. Defining palliative opportunities provides an additional framework to assess the disease trajectory for patients suffering from oncologic diseases. Additional work is needed to further refine what qualifies as a palliative opportunity, how to fully capture opportunities, and how those may differ across different cancers.
Identifier
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<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</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).
2019
Adolescent
Allen K
bone marrow
bone tumor
Brock K
Cancer Patient
Cancer Recurrence
Child
conference abstract
Controlled Study
Death
disease exacerbation
do not resuscitate order
Ebelhar J
Female
Hospice
Hospital Admission
Human
Intensive Care
Major Clinical Study
Male
Oncology 2019 List
Palliative Therapy
Pediatric Blood and Cancer
pediatric patient
phase 1 clinical trial
relapse
Retrospective Study
soft tissue tumor
solid malignant neoplasm
Statistics
Wasilewski-Masker K
-
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
2018 Oncology 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
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.26895" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1002/pbc.26895</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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Illness and end-of-life experiences of children with cancer who receive palliative care
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
hospice; Child; Palliative Care; death; Life Change Events; artificial ventilation; personal experience; palliative therapy; major clinical study; retrospective study; childhood cancer; hospital patient; Only Child; cohort analysis; cost effectiveness analysis; human; article; child; female; male; controlled study; quality of life; hospitalization; resuscitation; intensive care unit; invasive procedure; experimental therapy; cancer susceptibility; cancer center; data extraction; phase 1 clinical trial
Creator
An entity primarily responsible for making the resource
Kaye EC; Gushue CA; DeMarsh S; Jerkins J; Sykes A; Lu Z; Snaman JM; Blazin L; Johnson LM; Levine DR; Morrison RR; Baker JN
Description
An account of the resource
Background: The field of pediatric palliative oncology is newly emerging. Little is known about the characteristics and illness experiences of children with cancer who receive palliative care (PC). Methods: A retrospective cohort study of 321 pediatric oncology patients enrolled in PC who died between 2011 and 2015 was conducted at a large academic pediatric cancer center using a comprehensive standardized data extraction tool. Results: The majority of pediatric palliative oncology patients received experimental therapy (79.4%), with 40.5% enrolled on a phase I trial. Approximately one-third received cancer-directed therapy during the last month of life (35.5%). More than half had at least one intensive care unit hospitalization (51.4%), with this subset demonstrating considerable exposure to mechanical ventilation (44.8%), invasive procedures (20%), and cardiopulmonary resuscitation (12.1%). Of the 122 patients who died in the hospital, 44.3% died in the intensive care unit. Patients with late PC involvement occurring less than 30 days before death had higher odds of dying in the intensive care unit over the home/hospice setting compared to those with earlier PC involvement (OR: 4.7, 95% CI: 2.47-8.97, P < 0.0001). Conclusions: Children with cancer who receive PC experience a high burden of intensive treatments and often die in inpatient intensive care settings. Delayed PC involvement is associated with increased odds of dying in the intensive care unit. Prospective investigation of early PC involvement in children with high-risk cancer is needed to better understand potential impacts on cost-effectiveness, quality of life, and delivery of goal concordant care.
Identifier
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<a href="http://doi.org/%2010.1002/pbc.26895" target="_blank" rel="noreferrer noopener">10.1002/pbc.26895</a>
2018
Article
Artificial Ventilation
Baker JN
Blazin L
cancer center
cancer susceptibility
Child
Childhood Cancer
Cohort Analysis
Controlled Study
Cost Effectiveness Analysis
data extraction
Death
DeMarsh S
Experimental Therapy
Female
Gushue CA
Hospice
Hospital Patient
Hospitalization
Human
Intensive Care Unit
invasive procedure
Jerkins J
Johnson LM
Kaye EC
Levine DR
Life Change Events
Lu Z
Major Clinical Study
Male
Morrison RR
Oncology 2018 List
Only Child
Palliative Care
Palliative Therapy
Pediatric Blood and Cancer
Personal Experience
phase 1 clinical trial
Quality Of Life
Resuscitation
Retrospective Study
Snaman JM
Sykes A