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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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Oncology
Text
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Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1089/jpm.2008.0172" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2008.0172</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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Race does not influence do-not-resuscitate status or the number or timing of end-of-life care discussions at a pediatric oncology referral center
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
2009
Subject
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African Continental Ancestry Group; Cancer Care Facilities; Decision Making; European Continental Ancestry Group; Pediatrics; Resuscitation Orders; Terminal Care; Adolescent; Child; Female; Humans; Infant; Male; Medical Audit; Preschool; United States
Creator
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Baker JN; Rai S; Liu W; Srivastava K; Kane JR; Zawistowski CA; Burghen EA; Gattuso JS; West N; Althoff J; Funk A; Hinds PS
Description
An account of the resource
BACKGROUND: End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We assessed whether race (white, black) was associated with the frequency of do-not-resuscitate (DNR) orders, the number and timing of EOLC discussions, or the timing of EOLC decisions among patients treated at our institution who died. METHODS: We reviewed the records of 380 patients who died between July 1, 2001 and February 28, 2005. Chi(2) and Wilcoxon rank-sum tests were used to test the association of race with the number and timing of EOLC discussions, the number of DNR changes, the timing of EOLC decisions (i.e., DNR order, hospice referral), and the presence of a DNR order at the time of death. These analyses were limited to the 345 patients who self-identified as black or white. RESULTS: We found no association between race and DNR status at the time of death (p = 0.57), the proportion of patients with DNR order changes (p = 0.82), the median time from DNR order to death (p = 0.51), the time from first EOLC discussion to DNR order (p = 0.12), the time from first EOLC discussion to death (p = 0.33), the proportion of patients who enrolled in hospice (p = 0.64), the time from hospice enrollment to death (p = 0.2) or the number of EOLC discussions before a DNR decision (p = 0.48). CONCLUSION: When equal access to specialized pediatric cancer care is provided, race is not a significant factor in the presence or timing of a DNR order, enrollment in or timing of enrollment in hospice, or the number or timing of EOLC discussions before death.
Identifier
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<a href="http://doi.org/10.1089/jpm.2008.0172" target="_blank" rel="noreferrer">10.1089/jpm.2008.0172</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).
2009
Adolescent
African Continental Ancestry Group
Althoff J
Baker JN
Burghen EA
Cancer Care Facilities
Child
Decision Making
European Continental Ancestry Group
Female
Funk A
Gattuso JS
Hinds PS
Humans
Infant
Journal of Palliative Medicine
Kane JR
Liu W
Male
Medical Audit
Oncology 2017 List
Pediatrics
Preschool
Rai S
Resuscitation Orders
Srivastava K
Terminal Care
United States
West N
Zawistowski CA
-
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 2016 List
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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Children With Minimal Chance For Cure: Parent Proxy Of The Child's Health-related Quality Of Life And The Effect On Parental Physical And Mental Health During Treatment.
Publisher
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Journal Of Neuro-oncology
Date
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2016
Subject
The topic of the resource
Pediatric Cancer; Oncology; Validity; Pedsql(tm); Impact; Module; Palliative Care; Diffuse Intrinsic Pontine Glioma; Clinical Neurology; Reliability; Pediatric Brain Tumor; Quality Of Life
Diffuse Intrinsic Pontine Glioma; Palliative Care; Pediatric Brain Tumor; Quality Of Life
Creator
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Mandrell B; Baker J; Levine D; Gattuso J; West N; Sykes A; Gajjar A; Broniscer A
Description
An account of the resource
Abstract
To assess health-related quality of life (HRQOL) from the time of diagnosis until disease progression in a cohort of children with diffuse intrinsic pontine glioma (DIPG). The assessment was collected from the perspectives of the child and their parents and evaluated the effect of the child's HRQOL on their parents' physical and mental well-being, thus providing insight into the optimal timing of palliative consultation, including anticipatory grief and bereavement services. This longitudinal study assessed 25 parents and their children, ages 2-17 years of age with DIPG across five time-points, baseline and weeks 2, 4, 6, 16, 24. Assessments included the PedsQL 4.0 Core Scales, PedsQL 3.0 Brain Tumor Scale, and Short-Form 36. HRQOL instruments were completed by the child (age ≥5 years) and parent-proxy (ages 2-17 years), with the parent completing the SF-36. Children's reports and parents' proxy of their child's HRQOL indicated poor physical functioning and increased anxiety at the initiation of therapy. A trending improvement in the children's HRQOL was reported by children and parents from baseline to week 6, with a decline at week 16. The childs' parent proxy reported cognitive problems, procedural anxiety and lower overall brain tumor HRQOL were assoicated with poorer self-reported parental mental status. Palliative care consultation should be initiated at the time of diagnosis and is supported in the high physical and emotional symptom burden reported by our patients, with heightened involvement initiated at 16 weeks. Prompt palliative care involvement, mitigating anxiety associated with clinic visits and procedures, management of brain tumor specific symptoms, advanced care planning, anticipatory grief and bereavement services, and care coordination may maximize HRQOL for patients and ensure positive long-term outcomes for parents of children with DIPG.
Identifier
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DOI: 10.1007/s11060-016-2187-9
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).
2016
Baker J
Broniscer A
Clinical Neurology
Diffuse Intrinsic Pontine Glioma
Gajjar A
Gattuso J
Impact
Journal of Neuro-Oncology
Levine D
Mandrell B
Module
Oncology
Palliative Care
Pediatric Brain Tumor
Pediatric Cancer
Pedsql(tm)
Quality Of Life
Reliability
September 2016 List
Sykes A
Validity
West N