1
40
5
-
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
November 2021 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
November 2021 List
URL Address
<a href="http://doi.org/10.3390/children8090802" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children8090802</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
Palliative Care in Pediatric Pulmonology
Publisher
An entity responsible for making the resource available
Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
palliative care; quality of life; bronchopulmonary dysplasia; communication; pulmonary hypertension; cystic fibrosis; psychosocial support; neuromuscular disease; lung transplant; pediatric pulmonology; primary palliation
Creator
An entity primarily responsible for making the resource
Baumann T; Das S; Jarrell JA; Nakashima-Paniagua Y; Benitez EA; Gazzaneo MC; Villafranco N
Description
An account of the resource
Children with End Stage Lung Disease (ESLD) are part of the growing population of individuals with life-limiting conditions of childhood. These patients present with a diverse set of pulmonary, cardiovascular, neuromuscular, and developmental conditions. This paper first examines five cases of children with cystic fibrosis, bronchopulmonary dysplasia, neuromuscular disease, pulmonary hypertension, and lung transplantation from Texas Children's Hospital. We discuss the expected clinical course of each condition, then review the integration of primary and specialized palliative care into the management of each diagnosis. This paper then reviews the management of two children with end staged lung disease at Hospital Civil de Guadalajara, providing an additional perspective for approaching palliative care in low-income countries.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/children8090802" target="_blank" rel="noreferrer noopener">10.3390/children8090802</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).
2021
Baumann T
Benitez EA
Bronchopulmonary Dysplasia
Children
Communication
Cystic Fibrosis
Das S
Gazzaneo MC
Jarrell JA
lung transplant
Nakashima-Paniagua Y
Neuromuscular Disease
November 2021 List
Palliative Care
Pediatric Pulmonology
primary palliation
psychosocial support
pulmonary hypertension
Quality Of Life
Villafranco N
-
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 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
A name given to the resource
Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease
Publisher
An entity responsible for making the resource available
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1002/ajmg.a.33902" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ajmg.a.33902</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
Sleep abnormalities in untreated patients with mucopolysaccharidosis type VI
Publisher
An entity responsible for making the resource available
American Journal of Medical Genetics Part A
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
clinical feature; priority journal; preschool child; cross-sectional study; prospective study; human; article; child; female; male; controlled study; clinical article; prevalence; disease severity; pulmonary hypertension; polysomnography; disease association; anamnesis; apnea; Doppler echocardiography; Glycosaminoglycans; Lysosomal storage diseases; lysosome storage disease; macroglossia; Maroteaux Lamy syndrome; Morquio syndrome; Mucopolysaccharidosis; oxygen saturation; oxygen/ec [Endogenous Compound]; physical examination; pigeon thorax; Sleep apnea; sleep apnea syndrome/di [Diagnosis]; sleep disorder; snoring; breathing difficulties; MPSVI; trajectory; characteristics; witnessed apnea
Creator
An entity primarily responsible for making the resource
John A; Fagondes S; Schwartz I; Azevedo A C; Barrios P; Dalcin P; Menna-Barreto S; Giugliani R
Description
An account of the resource
Mucopolysaccharidosis type VI (MPS VI) is a lysosomal storage disease that affects an enzyme responsible for the degradation of glycosaminoglycans (GAGs). Partially degraded GAGs accumulate in several tissues, such as the upper airways (UA), which leads to the development of obstructive sleep apnea (OSA). Our objective was to determine the prevalence of OSA in a group of untreated patients with MPS VI and the association of OSA with clinical and echocardiographic findings. Patients aged 4 years or older with a biochemical diagnosis of MPS VI were included. Data about clinical history, physical examination, Doppler echocardiogram, and overnight polysomnography (PSG) were collected. Our results showed that of the 28 participants, 14 were boys; mean age was 98.5 months, and mean age at MPS VI diagnosis was 48.4 months. Snoring, witnessed apnea, pectus carinatum, and macroglossia were the main clinical findings. PSG results showed that 23:27 patients (85.1%) had OSA which was mild in 4, moderate in 5, and severe in 14 patients. Echocardiograms showed evidence of pulmonary hypertension (PH) in 14 patients. Lower (P=0.037) and nadir SpO<inf>2</inf> (P=0.007) were positively associated with PH. Clinical signs suggestive of respiratory abnormalities during sleep were not significantly correlated with the results of PSG. We conclude that the prevalence of OSA in patients with MPS VI was high, and the level of desaturation was positively correlated with PH. Symptoms during sleep were not associated with PSG findings, which suggests that this population should undergo routine PSG as earlier as possible. This study provides baseline data to estimate the potential impact of specific treatments in the sleep abnormalities presented by patients with MPS VI. © 2011 Wiley-Liss, Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ajmg.a.33902" target="_blank" rel="noreferrer noopener">10.1002/ajmg.a.33902</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).
2011
American Journal of Medical Genetics Part A
anamnesis
apnea
Article
Azevedo A C
Barrios P
breathing difficulties
characteristics
Child
Clinical Article
Clinical Feature
Controlled Study
Cross-sectional Study
Dalcin P
disease association
Disease Severity
Doppler echocardiography
Fagondes S
Female
Giugliani R
Glycosaminoglycans
Human
John A
Lysosomal storage diseases
lysosome storage disease
macroglossia
Male
Maroteaux Lamy syndrome
Menna-Barreto S
Morquio syndrome
MPSVI
Mucopolysaccharidosis
oxygen saturation
oxygen/ec [Endogenous Compound]
physical examination
pigeon thorax
Polysomnography
Preschool Child
Prevalence
Priority Journal
Prospective Study
pulmonary hypertension
Schwartz I
Sleep apnea
sleep apnea syndrome/di [Diagnosis]
sleep disorder
snoring
Trajectory
witnessed apnea
-
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
March 2020 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
March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.323" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.323</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
Parent-Reported Outcomes of Prognostic Communication in Hospitalized Children with Advanced Heart Disease (S762)
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
2020
Subject
The topic of the resource
adult; cardiology; Caucasian; child; cohort analysis; conference abstract; controlled study; conversation; decision making; expectation; female; heart single ventricle; high school; hospitalization; hospitalized child; human; infant; intubation; length of stay; major clinical study; male; married person; medical record review; mother; prognosis; prospective study; pulmonary hypertension; pulmonary vein stenosis; recall; young adult
Creator
An entity primarily responsible for making the resource
Miller M K; Morell E; Feraco A; Goldberg S; Reichman J; Sahakian L; Sleeper L; Blume E
Description
An account of the resource
Objectives: * Describe a prospective study to evaluate how parents of children with advanced heart disease (AHD) perceive communication about prognosis with their child's physicians. * Describe results from this analysis that found no correlation between length of stay of a child with advanced heart disease and parent reports of conflicting information from physicians. Original Research Background and Objectives: Communication between parents and physicians is essential to high-quality care. For families of patients with AHD, understanding prognosis is critical to decision making and is associated with less perceived suffering at end of life. This is the first study to prospectively evaluate how parents of children with AHD perceive prognostic communication with their child's physicians.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.323" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.323</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
Adult
Blume E
Cardiology
Caucasian
Child
Cohort Analysis
conference abstract
Controlled Study
Conversation
Decision Making
Expectation
Female
Feraco A
Goldberg S
heart single ventricle
high school
Hospitalization
Hospitalized Child
Human
Infant
Intubation
Journal of Pain and Symptom Management
Length Of Stay
Major Clinical Study
Male
March 2020 List
married person
Medical Record Review
Miller M K
Morell E
Mother
Prognosis
Prospective Study
pulmonary hypertension
pulmonary vein stenosis
Recall
Reichman J
Sahakian L
Sleeper L
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
November 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
November 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537439.06687.80" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537439.06687.80</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
Talking to families when death becomes a likely outcome-a pilot simulation programme to improve end of life conversations during and around PICU admission
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
conversation;death;simulation;advanced cancer;bone marrow transplantation;cancer staging;cerebrovascular accident;Child;conference abstract;controlled study;craniofacial surgery;experimental therapy;human;immunology;life sustaining treatment;multidisciplinary team;nursing role;oncology;palliative therapy;pulmonary hypertension;treatment failure
Creator
An entity primarily responsible for making the resource
Sidgwick P;Du Pre P;Skellett S
Description
An account of the resource
Aims & Objectives: End of life conversations form the basis of many complex communication scenarios in paediatric intensive care (PICU). These conversations are sometimes initiated late in the disease process. Anecdotal evidence is that many clinicians shy away from the subject matter for a wide variety of reasons. A multidisciplinary, one-day pilot simulation course to address this unmet need was designed by the PICU and palliative care teams for members of the multidisciplinary team (MDT) who admit to our PICU. Methods The course was oversubscribed and candidates were evenly drawn from medical and senior nursing roles; specialties represented included PICU, immunology, bone marrow transplant, oncology, pulmonary hypertension and craniofacial surgery. A range of clinically complex and personally challenging clinical scenarios were developed for use with experienced educational actors. These included: Previously fit and well child post cerebrovascular accident with a deeply religious family Child with end stage cancer whose parents had the option of an experimental treatment Child with advanced pulmonary hypertension whose parents are angry about failure of treatment Child with incurable malignancy with parents reluctant to ask for withdrawal of life sustaining treatment but who secretly wish it to be offered A demonstration scenario was run by the faculty for all candidates and four simulations were run in groups of four. Simulation safety and debrief tools were utilised throughout Results Feedback from the day was universally positive. Conclusions There is significant need for this course. Plans are now under way to extend it to a wider cohort of the PICU MDT and run it on a regular basis.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.pcc.0000537439.06687.80" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537439.06687.80</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).
2018
Advanced Cancer
Bone Marrow Transplantation
Cancer Staging
Cerebrovascular Accident
Child
conference abstract
Controlled Study
Conversation
craniofacial surgery
Death
Du Pre P
Experimental Therapy
Human
Immunology
Life Sustaining Treatment
Multidisciplinary team
November 2018 List
nursing role
Oncology
Palliative Therapy
Pediatric Critical Care Medicine
pulmonary hypertension
Sidgwick P
Simulation
Skellett S
Treatment Failure