1
40
9
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Title
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2020 Developing World List
Text
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Developing World 2020 List
URL Address
<a href="http://doi.org/10.1002/cncr.33151" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cncr.33151</a>
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Barriers to the early integration of palliative care in pediatric oncology in 11 Eurasian countries
Publisher
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Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Eurasia; global health; low-income and middle-income countries (LMICs); palliative care integration; pediatric oncology; pediatric palliative care; physician perspectives
Creator
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Ehrlich B S; Movsisyan N; Batmunkh T; Kumirova E; Borisevich M V; Kirgizov K; Graetz D E; McNeil M J; Yakimkova T; Vinitsky A; Ferrara G; Li C; Lu Z; Kaye E C; Baker J N; Agulnik A
Description
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BACKGROUND: The early integration of palliative care significantly improves quality of life for children with cancer. However, cultural, structural, and socioeconomic barriers can delay the integration of palliative care into cancer care, particularly in low-income and middle-income countries. To date, little is known regarding the timing of and barriers to palliative care integration in Eurasia. METHODS: The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey evaluates physician perceptions regarding palliative care integration into pediatric oncology in Eurasia. This evidence-based survey was adapted to the regional context; iteratively reviewed by US and regional panelists; and piloted in English, Russian, and Mongolian. After distribution to physicians caring for children with cancer, statistical analysis was complemented by qualitative analysis of open-ended responses. RESULTS: A total of 424 physician responses were received from 11 countries in the Eurasian region. Study findings demonstrated wide variability in access to palliative care experts across countries (18%-96%), with the majority of providers (64%) reporting that the initial palliative care consultation typically occurs when curative options are no longer available. Providers desired an earlier initial palliative care consultation than what currently occurs in their setting (P < .001). Primary barriers to timely consultation included limited access to palliative care services and specialists, lack of physician education, and perceived family resistance. CONCLUSIONS: The current study is the first to identify physician perceptions of the delayed timing of palliative care integration into childhood cancer care and associated barriers in Eurasia. These findings will inform the development of targeted interventions to mitigate local structural and cultural barriers to access and facilitate earlier palliative care integration in the region.
Identifier
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<a href="http://doi.org/10.1002/cncr.33151" target="_blank" rel="noreferrer noopener">10.1002/cncr.33151</a>
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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
Agulnik A
Baker J N
Batmunkh T
Borisevich M V
Cancer
Developing World 2020 List
Ehrlich B S
Eurasia
Ferrara G
Global Health
Graetz D E
Kaye E C
Kirgizov K
Kumirova E
Li C
low-income and middle-income countries (LMICs)
Lu Z
McNeil M J
Movsisyan N
palliative care integration
Pediatric Oncology
Pediatric Palliative Care
physician perspectives
Vinitsky A
Yakimkova T
-
Dublin Core
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Title
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2020 Developing World List
Text
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Citation List Month
Developing World 2020 List
URL Address
<a href="http://doi.org/10.1002/cncr.33001" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cncr.33001</a>
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Title
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A multicountry assessment in Eurasia: Alignment of physician perspectives on palliative care integration in pediatric oncology with World Health Organization guidelines
Publisher
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Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Eurasia; global health; low-to-middle-income country (LMIC); pediatric oncology; pediatric palliative care; physician perspectives
Creator
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Ehrlich B S; Movsisyan N; Batmunkh T; Kumirova E; Borisevich M V; Kirgizov K; Graetz D E; McNeil M J; Yakimkova T; Vinitsky A; Ferrara G; Li C; Lu Z; Kaye E C; Baker J N; Agulnik A
Description
An account of the resource
BACKGROUND: The World Health Organization (WHO) advocates for early integration of palliative care for all children with life-threatening illness. Provider awareness and misperceptions, however, can impede this imperative. In the Eurasian region, little is known about physician knowledge and perspectives on palliative care. METHODS: The Assessing Doctors' Attitudes on Palliative Treatment survey was developed as an evidence-based and culturally relevant assessment of physician perceptions on palliative care integration into childhood cancer care in Eurasia. Iteratively tested by American and Eurasian palliative care experts, the survey was culturally adapted, translated, and piloted in English, Russian, and Mongolian. The survey was distributed to physicians caring for children with cancer. Fifteen statements were scored in accordance with WHO guidelines to evaluate provider knowledge. The statistical analysis was complemented by a qualitative analysis of open-ended responses. RESULTS: This study received 424 responses from 11 countries in Eurasia. The mean alignment between provider perspectives and WHO recommendations was 70% (range, 7%-100%). Significant independent predictors of higher alignment included country, prior palliative care education, and greater experience with patient death. Respondents primarily described palliative care as end-of-life care and symptom management. Two-thirds of respondents (67%) reported not feeling confident about delivering at least 1 component of palliative care. CONCLUSIONS: This is the first study assessing physician perspectives and knowledge of palliative care in Eurasia and reveals wide variability in alignment with WHO guidelines and limited confidence in providing palliative care. Study findings will inform targeted educational interventions, which must be tailored to the local political, economic, and cultural context.
Identifier
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<a href="http://doi.org/10.1002/cncr.33001" target="_blank" rel="noreferrer noopener">10.1002/cncr.33001</a>
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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
Agulnik A
Baker J N
Batmunkh T
Borisevich M V
Cancer
Developing World 2020 List
Ehrlich B S
Eurasia
Ferrara G
Global Health
Graetz D E
Kaye E C
Kirgizov K
Kumirova E
Li C
low-to-middle-income country (LMIC)
Lu Z
McNeil M J
Movsisyan N
Pediatric Oncology
Pediatric Palliative Care
physician perspectives
Vinitsky A
Yakimkova T
-
Dublin Core
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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/10.1634/theoncologist.2017-0650" target="_blank" rel="noreferrer noopener">http://doi.org/10.1634/theoncologist.2017-0650</a>
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Title
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Predictors of Location of Death for Children with Cancer Enrolled on a Palliative Care Service
Publisher
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Oncologist
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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article.; Death; End of life; Female; Humans; Location of death; Male; Neoplasms/*mortality; palliative care; Palliative Care/*methods; palliative oncology; Pediatric oncology
Creator
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Kaye E C; DeMarsh S; Gushue C A; Jerkins J; Sykes A; Lu Z; Snaman J M; Blazin L J; Johnson L M; Levine D R; Morrison R R; Baker J N
Description
An account of the resource
BACKGROUND: In the U.S., more children die from cancer than from any other disease, and more than one third die in the hospital setting. These data have been replicated even in subpopulations of children with cancer enrolled on a palliative care service. Children with cancer who die in high-acuity inpatient settings often experience suffering at the end of life, with increased psychosocial morbidities seen in their bereaved parents. Strategies to preemptively identify children with cancer who are more likely to die in high-acuity inpatient settings have not been explored. MATERIALS AND METHODS: A standardized tool was used to gather demographic, disease, treatment, and end-of-life variables for 321 pediatric palliative oncology (PPO) patients treated at an academic pediatric cancer center who died between 2011 and 2015. Multinomial logistic regression was used to predict patient subgroups at increased risk for pediatric intensive care unit (PICU) death. RESULTS: Higher odds of dying in the PICU were found in patients with Hispanic ethnicity (odds ratio [OR], 4.02; p = .002), hematologic malignancy (OR, 7.42; p < .0001), history of hematopoietic stem cell transplant (OR, 4.52; p < .0001), total number of PICU hospitalizations (OR, 1.98; p < .0001), receipt of cancer-directed therapy during the last month of life (OR, 2.96; p = .002), and palliative care involvement occurring less than 30 days before death (OR, 4.7; p < .0001). Conversely, lower odds of dying in the PICU were found in patients with hospice involvement (OR, 0.02; p < .0001) and documentation of advance directives at the time of death (OR, 0.37; p = .033). CONCLUSION: Certain variables may predict PICU death for PPO patients, including delayed palliative care involvement. Preemptive identification of patients at risk for PICU death affords opportunities to study the effects of earlier palliative care integration and increased discussions around preferred location of death on end-of-life outcomes for children with cancer and their families. IMPLICATIONS FOR PRACTICE: Children with cancer who die in high-acuity inpatient settings often experience a high burden of intensive therapy at the end of life. Strategies to identify patients at higher risk of dying in the pediatric intensive care unit (PICU) have not been explored previously. This study finds that certain variables may predict PICU death for pediatric palliative oncology patients, including delayed palliative care involvement. Preemptive identification of patients at risk for PICU death affords opportunities to study the effects of earlier palliative care integration and increased discussions around preferred location of death on end-of-life outcomes for children with cancer and their families.
Identifier
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<a href="http://doi.org/10.1634/theoncologist.2017-0650" target="_blank" rel="noreferrer noopener">10.1634/theoncologist.2017-0650</a>
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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).
2018
article.
Baker J N
Blazin L J
Death
DeMarsh S
End Of Life
Female
Gushue C A
Humans
Jerkins J
Johnson L M
Kaye E C
Levine D R
Location Of Death
Lu Z
Male
Morrison R R
Neoplasms/*mortality
Oncologist
Oncology 2019 List
Palliative Care
Palliative Care/*methods
palliative oncology
Pediatric Oncology
Snaman J M
Sykes 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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September 2020 List
Text
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September 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.06.036" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.06.036</a>
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Investigation of Modifiable Variables to Increase Hospice Nurse Comfort With Care Provision to Children and Families in the Community: A Population-Level Study Across Tennessee, Mississippi, and Arkansas
Publisher
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Journal of Pain and Symptom Management
Date
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2020
Subject
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community; education; hospice; palliative care; pediatric; training
Creator
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Kaye E C; Gattas M; Kiefer A; Reynolds J; Zalud K; Li C; Lu Z; Baker J N
Description
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Context: Most hospice nurses across Tennessee, Arkansas, and Mississippi report significant discomfort with provision of pediatric palliative and hospice care (PPHC). How best to target and modify variables to increase nurse comfort levels is not well understood. Objective(s): To determine whether modifiable variables are associated with increased hospice nurse comfort with PPHC provision in the community. Method(s): A cross-sectional survey was developed, pilot tested, and distributed to hospice nurses across a tristate region to assess nurse training experiences and comfort with PPHC provision. Targeted subanalyses were conducted to investigate associations between nurse comfort level and clinical, training, and patient frequency variables. Result(s): A total of 551 respondents representing 71 hospices across Tennessee, Arkansas, and Mississippi completed surveys. Hospice nurse comfort with provision of care to children was statistically significantly associated with exposure to prior PPHC clinical experiences (P < 0.001), receipt of formal pediatric PPHC training (P < 0.001), and higher hospice-level (P = 0.01) and individual-level frequency of PPHC provision (P < 0.001). PPHC clinical experience was the most impactful variable with respect to comfort with overall and end-of-life PPHC provision; formal training was the most impactful variable with respect to comfort with management of severe symptoms at the end of life. Conclusion(s): Modifiable variables exist that are readily targetable to improve hospice nurse comfort with PPHC provision. These findings should inform the development and investigation of clinical and educational interventions to empower both nurses and hospices to optimize the provision of quality care to children with serious illness and their families in the community. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.06.036" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.06.036</a>
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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
Baker J N
Community
Education
Gattas M
Hospice
Journal of Pain and Symptom Management
Kaye E C
Kiefer A
Li C
Lu Z
Palliative Care
Pediatric
Reynolds J
September 2020 List
Training
Zalud K
-
Dublin Core
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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/10.1177/1049909119836939" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909119836939</a>
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Title
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Impact of Race and Ethnicity on End-of-Life Experiences for Children With Cancer
Publisher
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
end of life; ethnicity; oncology; palliative care; pediatric; race
Creator
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Kaye E C; Gushue C A; DeMarsh S; Jerkins J; Li C; Lu Z; Snaman J M; Blazin L; Johnson L M; Levine D R; Morrison R R; Baker J N
Description
An account of the resource
BACKGROUND:: Racial and ethnic disparities in the provision of end-of-life care are well described in the adult oncology literature. However, the impact of racial and ethnic disparities at end of life in the context of pediatric oncology remains poorly understood. OBJECTIVE:: To investigate associations between end-of-life experiences and race/ethnicity for pediatric patients with cancer. METHODS:: A retrospective cohort study was conducted on 321 children with cancer enrolled on a palliative care service at an urban pediatric cancer who died between 2011 and 2015. RESULTS:: Compared to white patients, black patients were more likely to receive cardiopulmonary resuscitation (CPR; odds ratio [OR]: 4.109, confidence interval [CI]: 1.432-11.790, P = .009) and underwent 3.136 (CI: 1.433-6.869, P = .004) CPR events for every 1 white patient CPR event. The remainder of variables related to treatment and end-of-life care were not significantly correlated with race. Hispanic patients were less likely to receive cancer-directed therapy within 28 days prior to death (OR: 0.493, CI: 0.247-0.982, P = .044) as compared to non-Hispanic patients, yet they were more likely to report a goal of cure over comfort as compared to non-Hispanic patients (OR: 3.094, CI: 1.043-9.174, P = .042). The remainder of variables were not found to be significantly correlated with ethnicity. CONCLUSIONS:: Race and ethnicity influenced select end-of-life variables for pediatric palliative oncology patients treated at a large urban pediatric cancer center. Further multicenter investigation is needed to ascertain the impact of racial/ethnic disparities on end-of-life experiences of children with cancer.
Identifier
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<a href="http://doi.org/10.1177/1049909119836939" target="_blank" rel="noreferrer noopener">10.1177/1049909119836939</a>
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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).
2019
American Journal Of Hospice And Palliative Care
Baker J N
Blazin L
DeMarsh S
End Of Life
Ethnicity
Gushue C A
Jerkins J
Johnson L M
Kaye E C
Levine D R
Li C
Lu Z
Morrison R R
Oncology
Oncology 2019 List
Palliative Care
Pediatric
race
Snaman J M
-
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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December 2018 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
December 2018 List
URL Address
<a href="http://doi.org/%2010.1016/j.jpainsymman.2018.10.509" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/ 10.1016/j.jpainsymman.2018.10.509</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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Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses
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
pediatric; hospice; palliative care; training; community
Creator
An entity primarily responsible for making the resource
Kaye EC; Gattas M; Kiefer A; Reynolds J; Zalud K; Li Chen; Lu Z; Baker Justin N
Description
An account of the resource
Context Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs. Objective To determine the levels of experience and comfort of hospice nurses who provide care to children and families in the community. Methods A cross-sectional survey was developed to assess hospice nurse experience/comfort across the domains of symptom management, end-of-life care, goals of care, family-centered care, and bereavement. The survey was pilot-tested and distributed to hospice nurses across a tristate region. Results A total of 551 respondents across 71 hospices completed surveys. The majority of nurses reported no training in pediatric palliative or hospice care (89.8%), with approximately half reporting < 5 years of hospice experience (53.7%) and no pediatric hospice experience (49.4%). Those with pediatric hospice experience reported limited opportunities to maintain or build their skills, with the majority providing care to children several times a year or less (85.7%). Nurses reported feeling somewhat or very uncomfortable providing services to children during the illness trajectory and at the end of life across all domains. Conclusion Children with serious illness who receive care from local hospices often interface with nurses who lack training, experience, and comfort in the provision of palliative and hospice care to pediatric patients. These findings should inform future development and investigation of educational resources, training programs, and child- and family-centered policies to improve the delivery of palliative and hospice care to children in the community.
Identifier
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<a href="http://doi.org/10.1111/dmcn.14070" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14070</a>
2018
Baker Justin N
Community
December 2018 List
Gattas M
Hospice
Journal of Pain and Symptom Management
Kaye EC
Kiefer A
Li Chen
Lu Z
Palliative Care
Pediatric
Reynolds J
Training
Zalud 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>
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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
An unambiguous reference to the resource within a given context
<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
-
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/10.1016/j.jpainsymman.2018.01.021" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1016/j.jpainsymman.2018.01.021</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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Predictors of Late Palliative Care Referral in Children with Cancer
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
2018
Subject
The topic of the resource
Child; Hematologic Neoplasms; Referral and Consultation; Palliative Care; pediatric oncology; Palliative care; early integration; Only Child; consultation; palliative oncology; timing
Creator
An entity primarily responsible for making the resource
Kaye EC; Jerkins J; Gushue CA; DeMarsh S; Sykes A; Lu Z; Snaman JM; Blazin L; Johnson LM; Levine DR; Morrison RR; Baker JN
Description
An account of the resource
CONTEXT: Early integration of palliative care (PC) in the management of children with high-risk cancer is widely endorsed by patients, families, clinicians, and national organizations. However, optimal timing for PC consultation is not standardized, and variables that influence timing of PC integration for children with cancer remain unknown. OBJECTIVES: To investigate associations between demographic, disease, treatment, and end-of-life attributes and timing of PC consultation for children with high-risk cancer enrolled on a PC service. METHODS: A comprehensive standardized tool was used to abstract data from the medical records of 321 patients treated at a large academic pediatric cancer who died between 2011 and 2015. RESULTS: Gender, race, ethnicity, enrollment on a phase I protocol, number of high-acuity hospitalizations, and receipt of cardiopulmonary resuscitation were not associated with timing of PC involvement. Patients with hematologic malignancy, those who received cancer-directed therapy during the last month of life, and those with advance directives documented </=1 week prior to death had higher odds of late PC referral (malignancy: OR 3.24, p=0.001; therapy: OR 4.65, p<0.001; directive: OR 4.81, p<0.0001). Patients who received hospice services had lower odds of late PC referral <30 days prior to death (OR 0.31, p<0.001). CONCLUSIONS: Hematologic malignancy, cancer-directed therapy at the end of life, and delayed advance directives documentation are associated with late PC involvement in children who died with cancer. Identification of these variables affords opportunities to study targeted interventions to enhance access to earlier PC resources and services for children with high-risk cancer and their families.
Identifier
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<a href="http://doi.org/%2010.1016/j.jpainsymman.2018.01.021" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.01.021</a>
2018
Baker JN
Blazin L
Child
Consultation
DeMarsh S
early integration
Gushue CA
Hematologic Neoplasms
Jerkins J
Johnson LM
Journal of Pain and Symptom Management
Kaye EC
Levine DR
Lu Z
Morrison RR
Oncology 2018 List
Only Child
Palliative Care
palliative oncology
Pediatric Oncology
Referral And Consultation
Snaman JM
Sykes A
timing
-
Dublin Core
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October 2018 List
Text
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Citation List Month
September 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909118786875" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1177/1049909118786875</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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Incorporating Bereaved Parents as Faculty Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care.
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The American journal of hospice & palliative care
Date
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2018
Subject
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bereavement; communication training; end of life; palliative care education; pediatric oncology; pediatric palliative care
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Snaman JM; Kaye EC; Spraker-Perlman H; Levine D; Clark L; Wilcox R; Barnett B; Sykes April; Lu Z; Cunningham MJ; Baker JN
Description
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BACKGROUND: Education and training for interdisciplinary pediatric providers requires training in principles of palliative and end-of-life (EOL) care. The experiences of bereaved parents can inform and enhance palliative care educational curricula in uniquely powerful and valuable ways. The objective of this study is to present an innovative palliative care educational program facilitated by trained bereaved parents who serve as volunteer educators in local and national palliative care educational forums and to describe how incorporation of bereaved parents in these educational forums affects participant comfort with communication and management of children at the EOL. METHODS: Parent educators underwent both general and session-specific training and participated in debriefings following each session. Survey tools were developed or adapted to determine how bereaved parent educators affected participant experiences in 3 different educational forums. Pre- and postsession surveys with incorporation of retrospective preprogram assessment items to control for response shift were used in the evaluation of institutional seminars on pediatric palliative and EOL care and role-play-based communication training sessions. Results from feedback surveys sent to attendees were used to appraise the participants' experience at the international oncology symposium. RESULTS: Involvement of trained parent educators across diverse, interdisciplinary educational forums improved attendee comfort in communicating with, and caring for, patients and families with serious illness. Importantly, parent educators also derive benefit from involvement in educational sessions with interdisciplinary clinicians. CONCLUSIONS: Integration of bereaved parents into palliative and EOL care education is an innovative and effective model that benefits both interdisciplinary clinicians and bereaved parents.
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<a href="http://doi.org/10.1177/1049909118786875" target="_blank" rel="noreferrer noopener">10.1177/1049909118786875</a>
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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).
2018
Baker JN
Barnett B
Bereavement
Clark L
communication training
Cunningham MJ
End Of Life
Kaye EC
Levine D
Lu Z
Palliative Care Education
Pediatric Oncology
Pediatric Palliative Care
September 2018 List
Snaman JM
Spraker-Perlman H
Sykes April
The American Journal of Hospice & Palliative Care
Wilcox R