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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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April 2023 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 List 2023
URL Address
<a href="http://doi.org/10.1055/s-0041-1730916" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1055/s-0041-1730916</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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Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease
Publisher
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Journal of Pediatric Intensive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
intensive care unit; Palliative Care; child; article; female; human; major clinical study; male; newborn; retrospective study; advance care planning; palliative therapy; medical decision making; pediatrics; artificial ventilation; terminal care; hospitalization; information technology; hospital patient; patient referral; life sustaining treatment; congenital heart disease; consultation; mortality; pulmonary hypertension; infant; hospitalized child; length of stay; pediatric patient; extracorporeal oxygenation; disease course; cardiomyopathy; heart disease; catheterization; myocarditis; myopericarditis; pericarditis
Creator
An entity primarily responsible for making the resource
Green DJ; Bennett E; Olson LM; Wawrzynski S; Bodily S; Moore D; Mansfield KJ; Wilkins V; Cook L; Delgado-Corcoran C
Description
An account of the resource
Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7-128). Death often occurred in the intensive care unit (n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies (n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.Copyright © 2023 Georg Thieme Verlag. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1055/s-0041-1730916" target="_blank" rel="noreferrer noopener">10.1055/s-0041-1730916</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).
2023
Advance Care Planning
April List 2023
Article
Artificial Ventilation
Bennett E
Bodily S
Cardiomyopathy
Catheterization
Child
Congenital Heart Disease
Consultation
Cook L
Delgado-Corcoran C
Disease Course
extracorporeal oxygenation
Female
Green DJ
heart disease
Hospital Patient
Hospitalization
Hospitalized Child
Human
Infant
information technology
Intensive Care Unit
Journal of Pediatric Intensive Care
Length Of Stay
Life Sustaining Treatment
Major Clinical Study
Male
Mansfield KJ
Medical Decision Making
Moore D
Mortality
Myocarditis
myopericarditis
Newborn
Olson LM
Palliative Care
Palliative Therapy
Patient Referral
pediatric patient
Pediatrics
pericarditis
pulmonary hypertension
Retrospective Study
Terminal Care
Wawrzynski S
Wilkins V
-
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
June 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
June 2019 List
URL Address
<a href="https://www.ahajournals.org/doi/10.1161/circ.138.suppl_1.10512" target="_blank" rel="noreferrer noopener">https://www.ahajournals.org/doi/10.1161/circ.138.suppl_1.10512</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
When a child becomes terminal: Discrepant adolescent and parent perspectives on discussing a terminal prognosis with adolescents with cardiomyopathy, heart failure, and heart transplant
Publisher
An entity responsible for making the resource available
Circulation. Conference
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
advance care planning; adolescent; death; outpatient; prognosis; school child; cancer prognosis; malignant neoplasm; heart failure; conference abstract; human; child; controlled study; perception; conversation; cardiomyopathy; heart graft
Creator
An entity primarily responsible for making the resource
Hansen K; Edwards L A; Luong R; Yohannes K; Halpern-Felsher B; Cohen H; Kaufman B
Description
An account of the resource
Introduction: Adolescents with cardiomyopathy, heart failure, and heart transplant (CMHF/HTx) are at risk of life-changing complications and premature death. The importance of advance care planning (ACP) in pediatric patients with HIV and cancer has been demonstrated, but the ACP preferences of adolescents with heart disease and their parents have not been evaluated. We aimed to describe and compare ACP preferences of adolescents with CMHF/HTx and their parents. Method(s): Outpatient adolescents with CMHF/HTx, aged 12-18y, and their parents completed a self-administered survey from March to May 2018. The survey evaluated preferences regarding the importance of ACP, sharing of prognostic information, and timing of ACP discussions. Participants answered independently. In addition, parents were asked their perception of their child's response. Adolescents' and parents' survey responses were compared. Survey responses were recoded as dichotomous variables and compared using McNemar's test. Result(s): Twenty-five dyads (mean adolescent age 15.0 +/- 1.8 years) completed the survey. Most adolescents (71%) considered their current health to be very good or excellent. ACP importance was ranked moderately or extremely important by 44% adolescents compared to 88% parents (p=0.006). Most adolescents (88%) reported that they wanted their doctor to inform them as soon as their doctor knew they were dying; in contrast, only 44% of parents wanted the doctor to share this information with their child (p=0.003). The majority of parents (84%) and adolescents (80%) wanted the adolescent to be involved in end-of-life (EOL) decisions. Conclusion(s): While many adolescents with CMHF/HTx did not report that ACP was of great importance, they do not want to be kept in the dark if death is near. Adolescents with CMHF/HTx reported that they want to be told as soon as the physician knows they are going to die and want to be involved in EOL decisions. Parents want their adolescent to be involved in EOL decisions, but are less likely to want to share a terminal prognosis with the adolescent. These results highlight discrepancies between adolescent and parent views regarding EOL conversations. More research is needed to inform effective EOL communication between parent, adolescent, and provider.
2018
Adolescent
Advance Care Planning
Cancer Prognosis
Cardiomyopathy
Child
Circulation. Conference
Cohen H
conference abstract
Controlled Study
Conversation
Death
Edwards L A
Halpern-Felsher B
Hansen K
Heart Failure
heart graft
Human
June 2019 List
Kaufman B
Luong R
Malignant Neoplasm
Outpatient
Perception
Prognosis
School Child
Yohannes K
-
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
Backlog
URL Address
<a href="http://doi.org/10.1136/adc.2007.118141" target="_blank" rel="noreferrer">http://doi.org/10.1136/adc.2007.118141</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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Update on the management of Duchenne muscular dystrophy
Publisher
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Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Humans; Male; patient care team; Cardiomyopathy; Muscular Dystrophy; Physical Therapy Modalities; Respiration Disorders/etiology/therapy; Dilated/etiology/therapy; Duchenne/complications/diagnosis/genetics/therapy; Dystrophin/genetics; Gene Therapy/methods; Glucocorticoids/therapeutic use; Scoliosis/etiology/therapy
Creator
An entity primarily responsible for making the resource
Manzur AY; Kinali M; Muntoni F
Description
An account of the resource
Duchenne muscular dystrophy (DMD) is familiar to paediatricians as the most common childhood muscular dystrophy and leads to severe disability and early death in the late teenage years if untreated. Improvements in general care, glucocorticoid corticosteroid treatment, non-invasive ventilatory support, and cardiomyopathy and scoliosis management have significantly changed the course of DMD in treated individuals, so that survival into adulthood is now a realistic possibility for most patients. This has important implications for the medical and social sectors involved in the transition to adult medical services and the provision of suitable employment and social care. Multidisciplinary team working for optimal management of DMD-specific multisystem complications is essential, and collaboration in disease specific national clinical networks is recommended. Several curative therapeutic strategies including cell and gene therapy are being pursued but are still at an experimental stage.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.2007.118141" target="_blank" rel="noreferrer">10.1136/adc.2007.118141</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).
Type
The nature or genre of the resource
Journal Article
2008
Archives of Disease in Childhood
Backlog
Cardiomyopathy
Dilated/etiology/therapy
Duchenne/complications/diagnosis/genetics/therapy
Dystrophin/genetics
Gene Therapy/methods
Glucocorticoids/therapeutic use
Humans
Journal Article
Kinali M
Male
Manzur AY
Muntoni F
Muscular Dystrophy
Patient Care Team
Physical Therapy Modalities
Respiration Disorders/etiology/therapy
Scoliosis/etiology/therapy
-
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
Backlog
URL Address
<a href="http://doi.org/10.1016/j.healun.2003.09.015" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.healun.2003.09.015</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
Cardiac transplantation: a temporary solution for Friedreich's ataxia-induced dilated cardiomyopathy
Publisher
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The Journal Of Heart And Lung Transplantation : The Official Publication Of The International Society For Heart Transplantation
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Humans; Male; Adult; Time Factors; Cardiomyopathy; Dilated/etiology/surgery; Friedreich Ataxia/complications; Heart transplantation
Creator
An entity primarily responsible for making the resource
Sedlak TL; Chandavimol M; Straatman L
Description
An account of the resource
Friedreich's ataxia is an autosomal recessive neurodegenerative disease. We report the case of a 34-year-old man with Friedreich's ataxia and dilated cardiomyopathy who underwent successful cardiac transplantation. To our knowledge, this is the first reported case of a heart transplantation for Friedreich's ataxia dilated cardiomyopathy.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.healun.2003.09.015" target="_blank" rel="noreferrer">10.1016/j.healun.2003.09.015</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).
Type
The nature or genre of the resource
Journal Article
2004
Adult
Backlog
Cardiomyopathy
Chandavimol M
Dilated/etiology/surgery
Friedreich Ataxia/complications
Heart transplantation
Humans
Journal Article
Male
Sedlak TL
Straatman L
The Journal Of Heart And Lung Transplantation : The Official Publication Of The International Society For Heart Transplantation
Time Factors