1
40
5
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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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November 2018 List
Text
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November 2018 List
URL Address
<a href="http://doi.org/10.1016/j.ejpn.2018.09.002" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ejpn.2018.09.002</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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The role of the neuropediatrician in pediatric intensive care unit: Diagnosis, therapeutics and major participation in collaborative multidisciplinary deliberations about life-sustaining treatments' withdrawal
Publisher
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European Journal of Paediatric Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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Life sutaining treatment;Neuropediatrician;Palliative care;Pediatric intensive care unit;Withdrawal/withholding treatment
Creator
An entity primarily responsible for making the resource
Toulouse J;Hully M;Brossier D;Viallard ML;de Saint Blanquat L;Renolleau S;Kossorotoff M;Desguerre I
Description
An account of the resource
BACKGROUND: In Pediatric Intensive Care Unit (PICU) two types of population require the intervention of neuropediatricians (NP): chronic brain diseases' patients who face repetitive and prolonged hospitalizations, and patients with acute brain failure facing the risk of potential neurologic sequelae, and both conditions may result in a limitation of life-sustaining treatments (LLST) decision. OBJECTIVE: To assess NP's involvement in LLST decisions within the PICU of a tertiary hospital. METHOD: Retrospective study of medical reports of patients hospitalized during 2014 in the Necker-Hospital PICU. Patients were selected using keywords ("cardiorespiratory arrest", "death", "withdrawal of treatment", "palliative care", "acute brain failure", or "chronic neurological disease"), and/or if they were assessed by a NP during the hospitalization. Demographic and medical data were analysed, including the NP's assessment and data about Collaborative Multidisciplinary Deliberation (CMD) to discuss potential LLST. RESULTS: Among 1160 children, 274 patients were included and 142 (56%) were assessed by a NP during their hospitalization for diagnosis (n = 55) and/or treatment (n = 95) management. NP was required for 59%-100% of patients with neurological acute failure, and for 14-44% of patients with extra neurological failure. A LLST decision was taken after a CMD for 27 (9.8%) of them, and a NP was involved in 19/27 (70%) of these decisions that occurred during the hospitalization (n = 19) or before (n = 8).12 patients died thereafter the LLST decision (40% of the 30 dead patients). CONCLUSION: NP are clearly involved in the decision-process of LLST for patients admitted in PICU, claiming for close collaboration to improve current practices and the quality of the care provided to children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejpn.2018.09.002" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2018.09.002</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
Brossier D
de Saint Blanquat L
Desguerre I
European Journal of Paediatric Neurology
Hully M
Kossorotoff M
Life sutaining treatment
Neuropediatrician
November 2018 List
Palliative Care
Pediatric Intensive Care Unit
Renolleau S
Toulouse J
Viallard ML
Withdrawal/withholding treatment
-
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/10.1016/j.ejpn.2018.09.002" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ejpn.2018.09.002</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
The role of the neuropediatrician in pediatric intensive care unit: Diagnosis, therapeutics and major participation in collaborative multidisciplinary deliberations about life-sustaining treatments' withdrawal
Publisher
An entity responsible for making the resource available
European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society
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 sutaining treatment;Neuropediatrician;Palliative care;Pediatric intensive care unit;Withdrawal withholding treatment
Creator
An entity primarily responsible for making the resource
Toulouse J;Hully M;Brossier D;Viallard ML;de Saint Blanquat L;Renolleau S;Kossorotoff M;Desguerre I
Description
An account of the resource
BACKGROUND: In Pediatric Intensive Care Unit (PICU) two types of population require the intervention of neuropediatricians (NP): chronic brain diseases' patients who face repetitive and prolonged hospitalizations, and patients with acute brain failure facing the risk of potential neurologic sequelae, and both conditions may result in a limitation of life-sustaining treatments (LLST) decision. OBJECTIVE: To assess NP's involvement in LLST decisions within the PICU of a tertiary hospital. METHOD: Retrospective study of medical reports of patients hospitalized during 2014 in the Necker-Hospital PICU. Patients were selected using keywords ("cardiorespiratory arrest", "death", "withdrawal of treatment", "palliative care", "acute brain failure", or "chronic neurological disease"), and/or if they were assessed by a NP during the hospitalization. Demographic and medical data were analysed, including the NP's assessment and data about Collaborative Multidisciplinary Deliberation (CMD) to discuss potential LLST. RESULTS: Among 1160 children, 274 patients were included and 142 (56%) were assessed by a NP during their hospitalization for diagnosis (n = 55) and/or treatment (n = 95) management. NP was required for 59%-100% of patients with neurological acute failure, and for 14-44% of patients with extra neurological failure. A LLST decision was taken after a CMD for 27 (9.8%) of them, and a NP was involved in 19/27 (70%) of these decisions that occurred during the hospitalization (n = 19) or before (n = 8).12 patients died thereafter the LLST decision (40% of the 30 dead patients). CONCLUSION: NP are clearly involved in the decision-process of LLST for patients admitted in PICU, claiming for close collaboration to improve current practices and the quality of the care provided to children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejpn.2018.09.002" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2018.09.002</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
Brossier D
de Saint Blanquat L
Desguerre I
European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society
Hully M
Kossorotoff M
Life sutaining treatment
Neuropediatrician
November 2018 List
Palliative Care
Pediatric Intensive Care Unit
Renolleau S
Toulouse J
Viallard ML
Withdrawal withholding treatment
-
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/10.1177/0883073810381924" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073810381924</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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Consensus statement on standard of care for congenital muscular dystrophies
Publisher
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Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Creator
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Wang CH; Bonnemann CG; Rutkowski A; Sejersen T; Bellini J; Battista V; Florence JM; Schara U; Schuler PM; Wahbi K; Aloysius A; Bash RO; Beroud C; Bertini E; Bushby K; Cohn RD; Connolly AM; Deconinck N; Desguerre I; Eagle M; Estournet-Mathiaud B; Ferreiro A; Fujak A; Goemans N; Iannaccone ST; Jouinot P; Main M; Melacini P; Mueller-Felber W; Muntoni F; Nelson LL; Rahbek J; Quijano-Roy S; Sewry C; Storhaug K; Simonds A; Tseng B; Vajsar J; Vianello A; Zeller R
Description
An account of the resource
Congenital muscular dystrophies are a group of rare neuromuscular disorders with a wide spectrum of clinical phenotypes. Recent advances in understanding the molecular pathogenesis of congenital muscular dystrophy have enabled better diagnosis. However, medical care for patients with congenital muscular dystrophy remains very diverse. Advances in many areas of medical technology have not been adopted in clinical practice. The International Standard of Care Committee for Congenital Muscular Dystrophy was established to identify current care issues, review literature for evidence-based practice, and achieve consensus on care recommendations in 7 areas: diagnosis, neurology, pulmonology, orthopedics/rehabilitation, gastroenterology/ nutrition/speech/oral care, cardiology, and palliative care. To achieve consensus on the care recommendations, 2 separate online surveys were conducted to poll opinions from experts in the field and from congenital muscular dystrophy families. The final consensus was achieved in a 3-day workshop conducted in Brussels, Belgium, in November 2009. This consensus statement describes the care recommendations from this committee.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0883073810381924" target="_blank" rel="noreferrer">10.1177/0883073810381924</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
2010
Aloysius A
Backlog
Bash RO
Battista V
Bellini J
Beroud C
Bertini E
Bonnemann CG
Bushby K
Cohn RD
Connolly AM
Deconinck N
Desguerre I
Eagle M
Estournet-Mathiaud B
Ferreiro A
Florence JM
Fujak A
Goemans N
Iannaccone ST
Jouinot P
Journal Article
Journal of Child Neurology
Main M
Melacini P
Mueller-Felber W
Muntoni F
Nelson LL
Quijano-Roy S
Rahbek J
Rutkowski A
Schara U
Schuler PM
Sejersen T
Sewry C
Simonds A
Storhaug K
Tseng B
Vajsar J
Vianello A
Wahbi K
Wang CH
Zeller R
-
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
January 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
January 2018 List
URL Address
<a href="http://doi.org/10.1016/j.ejpn.2017.04.1310" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ejpn.2017.04.1310</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 children with spinal muscular atrophy type 1: How do they die? Results from a French multicentric study (National Hospital clinical Research Program)
Publisher
An entity responsible for making the resource available
European Journal Of Paediatric Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
clinical research; palliative therapy; Werdnig Hoffmann disease; 50-48-6 (amitriptyline); 52-26-6 (morphine); 57-27-2 (morphine); 549-18-8 (amitriptyline); Amitriptyline; benzodiazepine derivative; Child; Clinical Article; clinical practice; Diagnosis; Drug Therapy; Female; follow up; Human; infant; Intensive care unit; Interview; Male; Morphine; multicenter study; nasogastric tube; Noninvasive Ventilation; psychologist; quantitative analysis; Resuscitation; time of death
Creator
An entity primarily responsible for making the resource
Hully M; Barnerias C; Vanesse S; Viallard ML; Desguerre I
Description
An account of the resource
Objective: The national Hospital Clinical Research Program (PHRC) called Assessment of clinical practices of palliative care in children with Spinal Muscular Atrophy Type 1 (SMA 1) was conducted to depict palliative practices in that fatal disease, in which death up to now occurs few weeks or months after the diagnosis. We here report data about the conditions of death for the patients included. Methods: In this French multicentric study, patients were included from june 2012 to june 2016. Parents and physicians filled in a specific health book during the follow up, the physician in charge filled in a survey concerning the patient's management over the last 48 hours before death, then a semidirected interview of the parents was conducted by a trained psychologist 6 to 18 months after the child's death. We here report the quantitative analysis of data obtained from the survey about patient's management around death. Results: 38 patients were included in the study (17 centres), data were available for 36 dead patients. Median age at inclusion was 3 months (0,6-10,4), death occurred at a median 5,5 month of age (1,5-16,4), i.e a median follow-up of 2 months (0,2-12,8). 39% of patients died at home, 6% in an intensive care unit. At the time of death, patients received morphine (56%), benzodiazepines (39%), amitriptyline (39%). Treatments were given through a nasogastric tube (83%), and oxygenotherapy was delivered (76%). 6% patients received noninvasive ventilation at the time of death. No resuscitation recommendations had been prepared for most patients (97%), written in 85%, after a multidisciplinary meeting in most cases (79%). Conclusion: Our data confirm current knowledge about natural outcome in SMA 1, death occurring very soon after the diagnosis, claiming for an effective palliative management of the patients, including the involvement of parents in medical care at home.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejpn.2017.04.1310" target="_blank" rel="noreferrer">10.1016/j.ejpn.2017.04.1310</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).
2017
50-48-6 (amitriptyline)
52-26-6 (morphine)
549-18-8 (amitriptyline)
57-27-2 (morphine)
Amitriptyline
Barnerias C
benzodiazepine derivative
Child
Clinical Article
Clinical Practice
Clinical Research
Desguerre I
Diagnosis
Drug Therapy
European Journal of Paediatric Neurology
Female
Follow Up
Hully M
Human
Infant
Intensive Care Unit
Interview
January 2018 List
Male
Morphine
Multicenter Study
nasogastric tube
Noninvasive Ventilation
Palliative Therapy
Psychologist
quantitative analysis
Resuscitation
time of death
Vanesse S
Viallard ML
Werdnig Hoffmann disease
-
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 2017 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
A name given to the resource
[end-of-life In Specialized Medical Pediatrics Department: A French National Survey]
Publisher
An entity responsible for making the resource available
Archives Pédiatrie
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Accompagnement de fin de vie; End-of-life accompanying; Intensive care; Neurologie; Neurology; Onco-hematology; Onco-hématologie; Pediatric palliative care; Pediatrics; Pédiatrie; Réanimation; Soins palliatifs pédiatriques
Creator
An entity primarily responsible for making the resource
Ravanello A; Desguerre I; Frache S; Hubert P; Orbach D; Aubry R
Description
An account of the resource
AIMS: In France, most of children die in the hospital. This national survey aimed to achieve better understanding of end-of life care in specialized medical pediatrics departments for children facing the end-of-life, identify the available resources, put forward the difficulties encountered by professionals and describe end-of-life paths of children who died in these departments. MATERIAL AND METHODS: This study is based on a nationwide survey conducted among all existing specialized medical pediatrics departments (onco-haematology, neurology, reanimation) in France in 2015. RESULTS: Among 94 specialized medical pediatrics departments in France, 53 participated in our survey (response rate=56%). At the time of the survey, 13% of inpatients were facing the end-of-life. Regarding training, 13% of departments did not have personnel trained in palliative care and 21% did not set up any professional support. However, when taking care of a child's end of life in 2014, 77% of these departments solicited a regional resource team of pediatric palliative care. This survey helps describe 225 end-of-life paths of children decease of a terminal illness in the specialized pediatrics departments. Seventy-two percent suffered from refractory symptoms before their death, 64% were concerned by a terminal sedation and 75% by a limitation of life-sustaining treatment decision. CONCLUSION: End-of-life care is a reality for specialized pediatrics departments. The frequency of major and refractory symptoms often requires the completion of sedation. The resources of service are acceptable but some deficiencies have been noted especially concerning training and support for caregivers, adaptation of premises or family support.
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).
2017
Accompagnement de fin de vie
Archives Pédiatrie
Aubry R
Desguerre I
End-of-life accompanying
Frache S
Hubert P
Intensive Care
March 2017 List
Neurologie
Neurology
Onco-hématologie
Onco-hematology
Orbach D
Pediatric Palliative Care
Pediatrics
Pédiatrie
Ravanello A
Réanimation
Soins palliatifs pédiatriques