1
40
3
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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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2020 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 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.11.022" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.11.022</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 the Boundaries of Palliative Care in Pediatric Oncology
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
2020
Subject
The topic of the resource
child; human; palliative therapy; controlled study; female; major clinical study; male; article; childhood cancer; terminal care; quality of life; interview; comfort; cancer patient; content analysis; skill; mental health; nurse practitioner; genetic transcription; pediatric oncologist; standardization
Creator
An entity primarily responsible for making the resource
Cuviello A; Raisanen J C; Donohue P K; Wiener L; Boss R D
Description
An account of the resource
Context: Although palliative care (PC) continues to be integrated into pediatric oncological care, only a minority of patients with cancer receive a formal PC consult.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.11.022" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.11.022</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).
2020
Article
Boss R D
Cancer Patient
Child
Childhood Cancer
Comfort
Content Analysis
Controlled Study
Cuviello A
Donohue P K
Female
genetic transcription
Human
Interview
Journal of Pain and Symptom Management
Major Clinical Study
Male
Mental Health
Nurse Practitioner
Oncology 2020 List
Palliative Therapy
pediatric oncologist
Quality Of Life
Raisanen J C
Skill
standardization
Terminal Care
Wiener L
-
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
August 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
August 2019 List
URL Address
<a href="http://doi.org/10.1111/dmcn.14244" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.14244</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
Supportive care in children with spinal muscular atrophy type 1: Results from a french multicentric study
Publisher
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Developmental Medicine and Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
death; child; female; human; major clinical study; male; palliative therapy; controlled study; conference abstract; prospective study; caregiver; clinical research; drug therapy; France; gastrostomy; history; intensive care unit; new drug; noninvasive ventilation; nusinersen; nutrition supplement; physician; sedation; sedative agent; standardization; Werdnig Hoffmann disease
Creator
An entity primarily responsible for making the resource
Hully M; Barnerias C; Chabrol B; Vuillerot C; Sabouraud P; Cuisset J M; Cances C; Ropars J; Rivier F; Isapoff A; Desguerre I
Description
An account of the resource
Introduction: This National Hospital Clinical Research Program (PHRC) was conducted in France between 2012 and 2016 to depict palliative practices in spinal muscular atrophy type 1 (SMA-1). New drugs (Nusinersen) have been developed and may modify its natural history. We thus present data about supportive care for patients included in that PHRC, comparing them to patients not included concomitantly. Patients and Methods: Supportive care data (enteral nutrition, non-invasive ventilation [NIV], sedation), age and place of death were collected prospectively from a specific health-book and a survey about conditions of death for the patients included in the PHRC and retrospectively by questioning physicians of the French Pediatric Neuromuscular Network for the other patients, some of them receiving Nusinersen. Result(s): In 18 centres, 38 patients were included in the PHRC, 43 were not; including 7 receiving Nusinersen. Mean age at diagnosis was 3.9 months (SD 2.4). 77 patients died at 7.5 months (SD 4,96), 32% at home, 8% in an intensive care unit. 85% patients received enteral nutrition, some through a gastrostomy (8%). 16% had a NIV. 70% received sedative treatment. No statistical difference was found between the two groups. However only all 3 patients (4%) receiving Nusinersen had both a gastrostomy and a NIV, without any sedation. Conclusion(s): Our data confirm that palliative care is essential in the management of ASI-1 patients, that is so far still a fatal disorder. Our data suggest that Nusinersen treatment was accompanied by more invasive supportive care, claiming for a standardization of practices in the children and caregivers' best-interest.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/dmcn.14244" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14244</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
August 2019 List
Barnerias C
Cances C
Caregiver
Chabrol B
Child
Clinical Research
conference abstract
Controlled Study
Cuisset J M
Death
Desguerre I
Developmental Medicine and Child Neurology
Drug Therapy
Female
France
Gastrostomy
History
Hully M
Human
Intensive Care Unit
Isapoff A
Major Clinical Study
Male
new drug
Noninvasive Ventilation
nusinersen
nutrition supplement
Palliative Therapy
Physician
Prospective Study
Rivier F
Ropars J
Sabouraud P
Sedation
Sedative Agent
standardization
Vuillerot C
Werdnig Hoffmann disease
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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
A name given to the resource
April 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
April 2018 List
URL Address
<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/jp.2017.160</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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Parental assessment of comfort in newborns affected by lifelimiting conditions treated by a standardized neonatal comfort care program
Publisher
An entity responsible for making the resource available
Journal of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
life expectancy; Infant; Newborn; health survey; newborn; health care quality; self report; parental attitude; prospective study; parental behavior; newborn care; child parent relation; health program; human; female; male; adult; article; clinical article; life limiting disease; patient comfort; physical disease; fluid intake; health care delivery; infant nutrition; kangaroo care; peer review; standardization
Creator
An entity primarily responsible for making the resource
Parravicini E; Daho M; Foe G; Steinwurtzel R; Byrne M
Description
An account of the resource
Objective:To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program.Study Design:Participants were parents (n=35 families) who elected comfort care for their newborns diagnosed with life-limiting conditions. Standardized comfort measures including family/infant bonding, warmth, nutrition/hydration and pain/discomfort management were provided to all infants. Parents consented to receive a questionnaire with quantitative response options and open-ended questions.Results:Forty-two questionnaires (26 from mothers and 16 from fathers) were collected and analyzed. Most parents reported that their child was treated with respect, in a caring, peaceful and non-invasive environment. To the question 'Do you think that overall your baby received comfort' mode response was 'always'.Conclusion:Parents of infants with life-limiting conditions perceive that their babies experience comfort as a result of the care provided by the standardized Neonatal Comfort Care Program.
Identifier
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<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">10.1038/jp.2017.160</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).
2018
Adult
April 2018 List
Article
Byrne M
Child Parent Relation
Clinical Article
Daho M
Female
fluid intake
Foe G
Health Care Delivery
Health Care Quality
health program
Health Survey
Human
Infant
Infant Nutrition
Journal Of Perinatology
kangaroo care
Life Expectancy
life limiting disease
Male
Newborn
Newborn Care
Parental Attitude
parental behavior
Parravicini E
Patient Comfort
Peer Review
physical disease
Prospective Study
Self Report
standardization
Steinwurtzel R