1
40
6
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Dublin Core
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Title
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September 2022 List
Text
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Citation List Month
September 2022 List
URL Address
<a href="http://doi.org/10.3390/children9060838" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children9060838</a>
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Title
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Using EmPalPed-An Educational Toolkit on Essential Messages in Palliative Care and Pain Management in Children-As a Strategy to Promote Pediatric Palliative Care
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Palliative care; Pediatrics; Children; Physicians; Education; Healthcare professionals; Pain assessment
Creator
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García-Quintero X; Claros-Hulbert A; Tello-Cajiao ME; Bolaños-Lopez JE; Cuervo-Suárez MI; Durán MGG; Gómez-García W; McNeil M; Baker JN
Description
An account of the resource
BACKGROUND: Most children needing palliative care (PC) live in low- and middle-income countries. In Colombia, pediatric palliative care (PPC) knowledge among healthcare professionals (HCPs) is lacking as PPC is not included in the educational curricula of healthcare programs. Therefore, specific training that improves knowledge of HCPs and access to PC for children and their families is needed. To address this gap, we organized and conducted the Essential Messages in Palliative Care and Pain Management in Children (EmPalPed), an educational toolkit to increase awareness and promote essential knowledge in PPC for low- and middle-income countries. METHODOLOGY: The EmPalPed toolkit consisted of a 5-h virtual workshop with small working groups of HCPs caring for children with life-threatening conditions such as cancer. The toolkit was organized along five key domains: (1) PC as it relates to the concept of quality of life (QoL), (2) effective communication, (3) addressing pain management as a top priority, (4) providing end-of-life care, and (5) access to high-quality PC as a fundamental human right. The workshop activities included different educational strategies and tools (e.g., a pocket guide for pain assessment and management, a PPC booklet, a quick guide for communicating bad news, role playing, and discussions of clinical cases). RESULTS: A total of 145 HCPs from 22 centers were trained. The post-test analysis for HCPs showed that attitude and knowledge about communication (p < 0.001), pain assessment (p < 0.001), first-line opioid of choice in children (p < 0.001), and palliative sedation (p < 0.001) had positive and statistically significant changes from the pre-test analysis. DISCUSSION: This study supported the notion that the EmPalPed educational toolkit is an effective mechanism for raising awareness regarding PPC as well as providing training in many of the key aspects of PPC. The EmPalPed training approach should be studied beyond this setting, and the impact should be measured longitudinally.
Identifier
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<a href="http://doi.org/10.3390/children9060838" target="_blank" rel="noreferrer noopener">10.3390/children9060838</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
Baker JN
Bolaños-Lopez JE
Children
Children (Basel)
Claros-Hulbert A
Cuervo-Suárez MI
Durán MGG
Education
García-Quintero X
Gómez-García W
Healthcare Professionals
McNeil M
Pain Assessment
Palliative Care
Pediatrics
Physicians
September 2022 List
Tello-Cajiao ME
-
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 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
September 2019 List
URL Address
<a href="http://doi.org/10.1177/0269216319866576" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319866576</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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Hospice nurses request paediatric-specific educational resources and training programs to improve care for children and families in the community: Qualitative data analysis from a population-level survey
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
qualitative research; Paediatrics; palliative care; education; hospice and palliative care nursing; health care surveys; hospice care; nursing
Creator
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Kaye EC; Applegarth J; Gattas M; Kiefer A; Reynolds J; Zalud K; Baker JN
Description
An account of the resource
BACKGROUND: Children with serious illness who receive hospice care often interface with nurses who lack training, experience and comfort in the provision of paediatric palliative and hospice care. Hospice nurse preferences for paediatric-specific training are not well known. AIM: To describe the types of paediatric-specific training received and educational content preferred by hospice nurses. DESIGN: Population-level dissemination of a cross-sectional survey with qualitative analysis of open-ended survey items. SETTING/PARTICIPANTS: Nurses from 71 community-based hospice organizations across 3 states completed the survey. RESULTS: An open-ended response was provided by 278/551 (50.5%) survey respondents. A total of 55 respondents provided 58 descriptions of prior paediatric-specific training, including a formal 2-day course (n = 36; 65.5%), on-the-job education (n = 13, 23.6%), online training (n = 5, 9.1%), nursing school (n = 2, 3.6%) and paediatric advanced life support courses (n = 2, 3.6%). A total of 67 respondents described 74 hospice-led educational efforts, largely comprised of a 2-day course (n = 39; 54.2%) or provision of written materials (n = 11; 15.3%). A total of 189 respondents described 258 preferences for paediatric-specific training, with nearly half (n = 93; 49.2%) requesting 'any' or 'all' types of education and the remainder requesting education around medication use (n = 48; 25.4%), symptom assessment/management (n = 32; 16.9%), pain assessment/management (n = 28; 14.8), communication (n = 29; 15.3%) and psychosocial assessment/management (n = 28; 14.8). CONCLUSIONS: Hospice nurses self-report inadequate exposure to educational resources and programs, in conjunction with a strong desire for increased paediatric-specific training. Identification of targetable gaps should inform the development of educational resources, policies and other supportive interventions to improve delivery of care to children and families in the community.
Identifier
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<a href="http://doi.org/10.1177/0269216319866576" target="_blank" rel="noreferrer noopener">10.1177/0269216319866576</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
Applegarth J
Baker JN
Education
Gattas M
Health Care Surveys
Hospice And Palliative Care Nursing
Hospice Care
Kaye EC
Kiefer A
Nursing
Paediatrics
Palliative Care
Palliative Medicine
Qualitative Research
Reynolds J
September 2019 List
Zalud K
-
Dublin Core
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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/10.1089/jayao.2018.0116" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1089/jayao.2018.0116</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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Identifying and Quantifying Adolescent and Young Adult Patient Preferences in Cancer Care: Development of a Conjoint Analysis-Based Decision-Making Tool
Publisher
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Journal of Adolescent and Young Adult Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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advance care planning; quality of life; end-of-life care; decision-making; communication; conjoint analysis
Creator
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Snaman JM; Blazin L; Holder RL; Wolfe J; Baker JN
Description
An account of the resource
Compared with younger children and older adults, adolescent and young adult (AYA) patients with cancer receive more intensive end-of-life (EOL) care. We hypothesize that enhanced understanding of AYA preferences, increased engagement of these patients in decision-making, and improved communication of their preferences with family members and the medical team will lead to increased provision of goal-concordant care and decreased intensity of EOL care. In this study, we describe the development of a novel tool that quantifies the relative importance of numerous factors considered by AYA patients with cancer, their parents, and health care providers when choosing between treatment options.
Identifier
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<a href="http://doi.org/%2010.1089/jayao.2018.0116" target="_blank" rel="noreferrer noopener">10.1089/jayao.2018.0116</a>
2018
Advance Care Planning
Baker JN
Blazin L
Communication
conjoint analysis
Decision-making
End-of-life Care
Holder RL
Journal Of Adolescent And Young Adult Oncology
Oncology 2018 List
Quality Of Life
Snaman JM
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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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/10.1007/s11136-017-1692-4" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1007/s11136-017-1692-4</a>
Dublin Core
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Title
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Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review
Publisher
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Quality of Life Research
Date
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2018
Subject
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Cross-Sectional Studies; Young Adult; Child; Humans; Adult; Adolescent; Reproducibility of Results; Biomedical Research; Quality of Life/psychology; Psychometrics; Adverse event self-report; Pediatric oncology; Self Report; Self-report instruments; Medical Oncology/standards
Creator
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Pinheiro LC; McFatrich M; Lucas N; Walker JS; Withycombe JS; Hinds PS; Sung L; Tomlinson D; Freyer DR; Mack JW; Baker JN; Reeve BB
Description
An account of the resource
OBJECTIVE: Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality self-report instruments to be used in pediatric oncology research studies. This study's objective was to conduct a systematic literature review of existing English language instruments used to measure self-reported symptoms in children and adolescents undergoing cancer treatment. METHODS: A comprehensive literature search was conducted in MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO to identify relevant articles published through November 10, 2016. Using pre-specified inclusion/exclusion criteria, six trained reviewers carefully screened abstracts and full-text articles for eligibility. RESULTS: There were 7738 non-duplicate articles identified in the literature search. Forty articles met our eligibility criteria, and within these articles, there were 38 self-report English symptom instruments. Most studies evaluated only cross-sectional psychometric properties, such as reliability or validity. Ten studies assessed an instrument's responsiveness or ability to detect changes in symptoms over time. Eight instruments met our criteria for use in future longitudinal pediatric oncology studies. CONCLUSIONS: This systematic review aids pediatric oncology researchers in identifying and selecting appropriate symptom measures with strong psychometric evidence for their studies. Enhancing the child's voice in pediatric oncology research studies allows us to better understand the impact of cancer and its treatment on the lives of children.
Identifier
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<a href="http://doi.org/%2010.1007/s11136-017-1692-4" target="_blank" rel="noreferrer noopener">10.1007/s11136-017-1692-4</a>
2018
Adolescent
Adult
Adverse event self-report
Baker JN
Biomedical Research
Child
Cross-sectional Studies
Freyer DR
Hinds PS
Humans
Lucas N
Mack JW
McFatrich M
Medical Oncology/standards
Oncology 2018 List
Pediatric Oncology
Pinheiro LC
Psychometrics
Quality of Life Research
Quality Of Life/psychology
Reeve BB
Reproducibility of Results
Self Report
Self-report instruments
Sung L
Tomlinson D
Walker JS
Withycombe JS
Young Adult
-
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>
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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
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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
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
An unambiguous reference to the resource within a given context
<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
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
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