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40
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Dublin Core
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Title
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November 2021 List
Text
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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
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Palliative Care in Pediatric Pulmonology
Publisher
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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
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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
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<a href="http://doi.org/10.3390/children8090802" target="_blank" rel="noreferrer noopener">10.3390/children8090802</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).
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
-
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/10.1053/j.semperi.2013.07.007" target="_blank" rel="noreferrer">http://doi.org/10.1053/j.semperi.2013.07.007</a>
Dublin Core
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Title
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Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology
Publisher
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Seminars In Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Emotions; Communication; Neonatology; empathy; cardiopulmonary resuscitation; gestational age; NICU; bronchopulmonary dysplasia; CPR; end of life decisions; Extreme prematurity; extremely low-gestational-age infants; Family Centered Care; Life-sustaining interventions; necrotizing enterocolitis; Personalized medicine; Withhold and withdraw intensive care
Creator
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Janvier A; Barrington K; Farlow B
Description
An account of the resource
The nature and content of the conversations between the healthcare team and the parents concerning withholding or withdrawing of life-sustaining interventions for neonates vary greatly. These depend upon the status of the infant; for some neonates, death may be imminent, while other infants may be relatively stable, yet with a potential risk for surviving with severe disability. Healthcare providers also need to communicate with prospective parents before the birth of premature infants or neonates with uncertain outcomes. Many authors recommend that parents of fragile neonates receive detailed information about the potential outcomes of their children and the choices they have provided in an unbiased and empathetic manner. However, the exact manner this is to be achieved in clinical practice remains unclear. Parents and healthcare providers may have different values regarding the provision of life-sustaining interventions. However, parents base their decisions on many factors, not just probabilities. The role of emotions, regret, hope, quality of life, resilience, and relationships is rarely discussed. End-of-life discussions with parents should be individualized and personalized. This article suggests ways to personalize these conversations. The mnemonic "SOBPIE" may help providers have fruitful discussions: (1) What is the Situation? Is the baby imminently dying? Should withholding or withdrawing life-sustaining interventions be considered? (2) Opinions and options: personal biases of healthcare professionals and alternatives for patients. (3) Basic human interactions. (4) Parents: their story, their concerns, their needs, and their goals. (5) Information: meeting parental informational needs and providing balanced information. (6) Emotions: relational aspects of decision making which include the following: emotions, social supports, coping with uncertainty, adaptation, and resilience. In this paper, we consider some aspects of this complex process.
2014-02
Identifier
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<a href="http://doi.org/10.1053/j.semperi.2013.07.007" target="_blank" rel="noreferrer">10.1053/j.semperi.2013.07.007</a>
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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).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Barrington K
Bronchopulmonary Dysplasia
Cardiopulmonary Resuscitation
Communication
CPR
Emotions
Empathy
end of life decisions
Extreme Prematurity
extremely low-gestational-age infants
Family Centered Care
Farlow B
Gestational Age
Janvier A
Journal Article
Life-sustaining Interventions
Necrotizing Enterocolitis
Neonatology
Nicu
Personalized medicine
Seminars in Perinatology
Withhold and withdraw intensive care
-
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/10.1542/peds.2012-2990" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-2990</a>
<a href="http://pediatrics.aappublications.org/content/132/3/e727" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/132/3/e727</a>
Dublin Core
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Title
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Outcomes of Children With Severe Bronchopulmonary Dysplasia Who Were Ventilator Dependent at Home
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
bronchopulmonary dysplasia; outcome; home; positive pressure ventilation; Tracheostomy
Creator
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Cristea AI; Carroll AE; Davis SD; Swigonski NL; Ackerman VL
Description
An account of the resource
OBJECTIVE: To describe the incidence and outcomes of children with chronic respiratory failure secondary to severe bronchopulmonary dysplasia (BPD) on chronic positive pressure ventilation (PPV) via tracheostomy at home. METHODS: We retrospectively reviewed medical charts of patients with severe BPD who were PPV dependent at home and who were enrolled in a university-affiliated home ventilator program between 1984 and 2010. We excluded patients with other comorbidities that could contribute to the development of chronic respiratory failure. We reported the incidence of these children in Indiana and cumulative incidences of survival, liberation from PPV, and decannulation. RESULTS: Over 27 years, 628 children were cared for in our home ventilator program. Of these, 102 patients met inclusion criteria: 83 (81.4%) were alive and 19 (18.6%) were deceased. Sixty-nine patients (67.6%) were liberated from PPV, and 97.1% of them were weaned before their fifth birthday, with a median age at liberation of 24 months (interquartile range, 19–33). Similarly, 60 patients (58.8%) were decannulated, of which 96.7% completed this process before their sixth birthday, with a median age at decannulation of 37.5 months (interquartile range, 31.5–45). The incidence of children with chronic respiratory failure secondary to BPD who were PPV-dependent at home in Indiana was 1.23 per 100 000 live births in 1984 and increased to 4.77 per 100 000 live births in 2010. CONCLUSIONS: Although extreme prematurity associated with severe BPD necessitating PPV at home carries significant risks of morbidity and mortality, successful liberation from mechanical ventilation and decannulation are likely to occur.
2013-09
Identifier
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<a href="http://doi.org/10.1542/peds.2012-2990" target="_blank" rel="noreferrer">10.1542/peds.2012-2990</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).
Type
The nature or genre of the resource
Journal Article
2013
Ackerman VL
Backlog
Bronchopulmonary Dysplasia
Carroll AE
Cristea AI
Davis SD
Home
Journal Article
Outcome
Pediatrics
positive pressure ventilation
Swigonski NL
Tracheostomy
-
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 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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Characterizing Mortality In Pediatric Tracheostomy Patients
Publisher
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Laryngoscope
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Pediatric Tracheostomy; Bronchopulmonary Dysplasia; Congenital Heart Disease; Tracheostomy Indication
Creator
An entity primarily responsible for making the resource
Funamura JL; Yuen S; Kawai K; Gergin O; Adil E; Rahbar R; Watters K
Description
An account of the resource
OBJECTIVES/HYPOTHESIS:
To assess the longitudinal risk of death following tracheostomy in the pediatric age group.
STUDY DESIGN:
Retrospective cohort study.
METHODS:
Hospital records of 513 children (≤18 years) at a tertiary care children's hospital who underwent tracheostomy between 1984 and 2015 were reviewed. The primary outcome measure was time from tracheostomy to death. Secondary patient demographic and clinical characteristics were assessed, with likelihood of death using χ2 tests and the Cox proportional hazards model.
RESULTS:
Median age at time of tracheostomy was 0.8 years (interquartile range, 0.3-5.2 years).The highest mortality rate (27.8%) was observed in patients in the 13- to 18-year-old age category; their mortality rate was significantly higher when compared to the lowest mortality risk group patients (age 1-4 years, P = .031). Timing of death was evenly distributed: <90 days (37.6%), 90 days to 1 year (27.1%), and >1 year after tracheostomy (35.3%). Patients who underwent tracheostomy for cardiopulmonary disease had an increased risk of mortality compared with airway obstruction (adjusted hazard ratio: 3.53, 95% confidence interval: 1.72-7.24, P < .001) and other indications. Adjusted hazard ratios for bronchopulmonary dysplasia (BPD) and congenital heart disease (CHD) were 2.63 and a 2.61, respectively (P < .001).
CONCLUSIONS:
Pediatric patients with tracheostomy have a high mortality rate, with an increased risk of death associated with a cardiopulmonary indication for undergoing tracheostomy. The majority of deaths occur after the index hospitalization during which the tracheostomy was performed. BPD and CHD are independent predictors of mortality in pediatric tracheostomy patients.
LEVEL OF EVIDENCE:
4 Laryngoscope, 2016.
Identifier
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DOI: 10.1002/lary.26361
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).
2016
Adil E
Bronchopulmonary Dysplasia
Congenital Heart Disease
Funamura JL
Gergin O
Kawai K
Laryngoscope
November 2016 List
Pediatric Tracheostomy
Rahbar R
Tracheostomy Indication
Watters K
Yuen S