1
40
6
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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/10.1007/s00431-021-04242-5" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00431-021-04242-5</a>
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Title
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High rate of clinically unrecognized SARS-CoV-2 infections in pediatric palliative care patients
Publisher
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European Journal of Pediatrics
Date
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2021
Subject
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Pediatrics; Palliative care; Covid-19; SARS-CoV-2; Comorbidities
Creator
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Bötticher B; Dinkelbach L; Hillebrecht M; Adams O; Dechert O; Trocan L; Neubert J; Borkhardt A; Janßen G
Description
An account of the resource
Little is known about the frequency and clinical course of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections in pediatric patients with severe comorbidities. In this prospective cross-sectional trial, the seroprevalence of SARS-CoV-2-IgG in patients with life-limiting conditions being treated by a large specialized pediatric palliative home-care team was determined. In order to gain insight into the infection chain, close contacts of seropositive patients were also included in the study. We analyzed the sera of 39 patients and found a 25.6% seroprevalence for SARS-CoV-2. No SARS-CoV-2 infections were known prior to the study. No significant difference was found in the symptom load between seropositive and seronegative patients during the risk period for SARS-CoV-2 infections. Of the 20 close contacts tested, only one was seropositive for SARS-CoV-2.Conclusions: Our results indicate a substantially high prevalence of silent SARS-CoV-2 infections in pediatric palliative care patients. Surprisingly, no severe outcomes were seen in this fragile patient collective with severe comorbidities. The chain of infection and thus the reason for the high frequency of SARS-CoV-2 infections in pediatric palliative care patients remain unclear. What is Known: •Even though severe disease courses of COVID-19 have been reported in children, there are yet no established risk factors for SARS-CoV-2 in pediatric patients. What is New: •In this cross-sectional seroprevalence study of palliative pediatric patients with severe life-limiting conditions, a high rate of seropositive patients (25.6%) was found. •Surprisingly, all seropositive patients were previously unrecognized, despite the severe comorbidities of our collective.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-021-04242-5" target="_blank" rel="noreferrer noopener">10.1007/s00431-021-04242-5</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).
2021
Adams O
Borkhardt A
Bötticher B
Comorbidities
COVID-19
Dechert O
Dinkelbach L
European Journal of Pediatrics
Hillebrecht M
Janßen G
Neubert J
November 2021 List
Palliative Care
Pediatrics
SARS-CoV-2
Trocan 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
February 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
February 2019 List
URL Address
<a href="http://doi.org/10.1186/s13023-018-0868-5" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1186/s13023-018-0868-5</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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Challenges of palliative care in children with inborn metabolic diseases
Publisher
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Orphanet Journal of Rare Diseases
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
decision making; gastrointestinal tract; palliative therapy; major clinical study; retrospective study; preschool child; cohort analysis; home visit; patient referral; human; article; child; female; male; controlled study; adult; gastrointestinal symptom; attention; young adult; resuscitation; advance care planning; neurologic disease; metabolic disorder
Creator
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Hoell JI; Warfsmann J; Distelmaier F; Borkhardt A; Janssen G; Kuhlen M
Description
An account of the resource
Background: Our objective was to evaluate children with metabolic diseases in paediatric palliative home care (PPC) and the process of decision-making. This study was conducted as single-centre retrospective cohort study of patients in the care of a large specialized PPC team. Results: Between 01/2013 and 09/2016, 198 children, adolescents and young adults were in the care of our PPC team. Twenty-nine (14.6%) of these patients had metabolic conditions. Median age at referral was 2.6 years (0-24), median duration of care 352 days (3-2248) and median number of home visits 13 (1-80). Most patients are still alive (16; 55.2%). Median number of drugs administered was 5 (range 0-12), antiepileptics were given most frequently. Symptom burden was high in all children with metabolic disorders at referral and remained high throughout care. Predominant symptoms were gastrointestinal, respiratory and neurologic symptoms. Children with metabolic conditions, who were referred to PPC younger than 1 year of age had a shorter period of care and died earlier compared to those children, who were referred to PPC later in their lives (older than 10 years of age). Eleven (37.9%) of the children initially had no resuscitation restrictions and 7 (53.8%) of those who died, did so on ICU. Conclusions: About 15% of children with life-limiting conditions in PPC present with metabolic diseases. Symptom burden is high with neurologic, respiratory and gastrointestinal symptoms being the most frequent and most of those being difficult to treat. In these children, particular attention needs to be addressed to advance care planning.Copyright � 2018 The Author(s).
Identifier
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<a href="http://doi.org/10.1186/s13023-018-0868-5" target="_blank" rel="noreferrer noopener">10.1186/s13023-018-0868-5</a>
2018
Adult
Advance Care Planning
Article
Attention
Borkhardt A
Child
Cohort Analysis
Controlled Study
Decision Making
Distelmaier F
February 2019 List
Female
Gastrointestinal Symptom
gastrointestinal tract
Hoell JI
Home Visit
Human
Janßen G
Kuhlen M
Major Clinical Study
Male
Metabolic Disorder
Neurologic Disease
Orphanet Journal Of Rare Diseases
Palliative Therapy
Patient Referral
Preschool Child
Resuscitation
Retrospective Study
Warfsmann J
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
June 2018 List
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).
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 2018 List
URL Address
<a href="http://doi.org/10.18632/oncotarget.24929" target="_blank" rel="noreferrer noopener">http://doi.org/10.18632/oncotarget.24929</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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Advance care planning and outcome in pediatric palliative home care
Publisher
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Oncotarget
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; home care; life sustaining treatment; medical order; palliative therapy; article; child; controlled study; death; female; hospice; human; major clinical study; male; resuscitation; retrospective study
Creator
An entity primarily responsible for making the resource
Hoell JI; Weber HL; Balzer S; Danneberg M; Gagnon G; Trocan L; Borkhardt A; Janssen G; Kuhlen M
Description
An account of the resource
Pediatric advance care planning seeks to ensure end-of-life care conforming to the patients/their families' preferences. To expand our knowledge of advance care planning and "medical orders for life-sustaining treatment" (MOLST) in pediatric palliative home care, we determined the number of patients with MOLST, compared MOLST between the four "Together for Short Lives" (TfSL) groups and analyzed, whether there was a relationship between the content of the MOLST and the patients' places of death. The study was conducted as a single-center retrospective analysis of all patients of a large specialized pediatric palliative home care team (01/2013-09/2016). MOLST were available in 179/198 children (90.4%). Most parents decided fast on MOLST, 99 (55.3%) at initiation of pediatric palliative home care, 150 (83.4%) within the first 100 days. MOLST were only changed in 7.8%. Eighty/179 (44.7%) patients decided on a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) order, 58 (32.4%) on treatment limitations of some kind and 41 (22.9%) wished for the entire spectrum of life-sustaining measures (Full Code). Most TfSL group 1 families wanted DNACPR and most TfSL group 3/4 parents Full Code. The majority (84.9%) of all DNACPR patients died at home/hospice. Conversely, all Full Code patients died in hospital (80% in an intensive care setting). The circumstances of the childrens' deaths can therefore be predicted considering the content of the MOLST. Regular advance care planning discussions are thus a very important aspect of pediatric palliative home care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.18632/oncotarget.24929" target="_blank" rel="noreferrer noopener">10.18632/oncotarget.24929</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
Advance Care Planning
Article
Balzer S
Borkhardt A
Child
Controlled Study
Danneberg M
Death
Female
Gagnon G
Hoell JI
Home Care
Hospice
Human
Janßen G
June 2018 List
Kuhlen M
Life Sustaining Treatment
Major Clinical Study
Male
medical order
Oncotarget
Palliative Therapy
Resuscitation
Retrospective Study
Trocan L
Weber HL
-
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
December 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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Experiences In Palliative Home Care Of Infants With Life-limiting Conditions.
Publisher
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European Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Caregivers; Female; Germany; Home Care Services/statistics & Numerical Data; Hospitals Pediatric; Humans; Infant; Infant Mortality; Infant Newborn; Male; Palliative Care/statistics & Numerical Data; Patient Comfort/statistics & Numerical Data; Terminal Care/statistics & Numerical Data
Home Care; Infants; Life-limiting Conditions; Neonates; Palliative Care
Creator
An entity primarily responsible for making the resource
Kuhlen M; Höll J; Sabir H; Borkhardt A; Jansen G
Description
An account of the resource
Abstract
The aim of this study was to determine the distinct issues neonates/infants with life-limiting conditions and their families face during palliative home care and to enable physicians/caregivers to carefully address their needs. Data on home-based palliative care of all neonates and infants, who were being taken care of by our paediatric palliative care team between 2007 and 2014, was analysed. A total of 31 patients (pts) were analysed. The majority of patients (n = 17) were diagnosed with congenital malformations or chromosomal abnormalities. Twenty pts died, five of them in hospital. A high percentage of pts presented with swallowing incoordination (83.9%) and was fed either by nasogastric tube or percutaneous endoscopic gastrostomy. Of the pts, 71.0% were treated with analgesics, 45.2% were oxygen dependent, and 9.7% required mechanical ventilation. Highest mortality was seen in pts with perinatal complications (75%). In four (12.9%) pts, palliative home care could come to an end as their conditions substantially improved.
CONCLUSIONS:
Palliative treatment of neonates/very young infants with terminal conditions at home seems to be similar to that of older children and feasible in children even with unstable conditions. The spectrum of diagnoses, signs and symptoms varies from older children with swallowing incoordination and artificial nutrition being of particular importance.
Identifier
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DOI: 10.1007/s00431-015-2637-y
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).
2015
Borkhardt A
Caregivers
December 2016 List
European Journal of Pediatrics
Female
Germany
Höll J
Home Care
Home Care Services/statistics & Numerical Data
Hospitals Pediatric
Humans
Infant
Infant Mortality
Infant Newborn
Infants
Jansen G
Kuhlen M
Life-limiting Conditions
Male
Neonates
Palliative Care
Palliative Care/statistics & Numerical Data
Patient Comfort/statistics & Numerical Data
Sabir H
Terminal Care/statistics & Numerical Data
-
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
October 2017 List
Notes
<p>1432-1076<br />Hoell, Jessica I<br />Warfsmann, Jens<br />Gagnon, Gabriele<br />Trocan, Laura<br />Balzer, Stefan<br />Oommen, Prasad T<br />Borkhardt, Arndt<br />Janssen, Gisela<br />Kuhlen, Michaela<br />ORCID: http://orcid.org/0000-0003-4577-0503<br />Journal Article<br />Germany<br />Eur J Pediatr. 2017 Aug 14. doi: 10.1007/s00431-017-2991-z.</p>; <p>Continental Europe; Europe. NLM UID: 7603873.<br />PMID: 28808789.</p>
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 For Children With A Yet Undiagnosed Syndrome
Publisher
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European Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Children; End-of-life Care; Palliative Care; Undiagnosed Syndrome
Creator
An entity primarily responsible for making the resource
Hoell J I; Warfsmann J; Gagnon G; Trocan L; Balzer S; Oommen P T; Borkhardt A; Jansen G; Kuhlen M
Description
An account of the resource
The number of children without a diagnosis in pediatric palliative home care and the process of decision-making in these children are widely unknown. The study was conducted as single-center retrospective cohort study. Between January 2013 and September 2016, 198 children and young adults were cared for; 27 (13.6%) of these were without a clear diagnosis at the start of pediatric palliative home care. A definite diagnosis was ultimately achieved in three children. Median age was 7 years (0-25), duration of care 569 days (2-2638), and number of home visits 7.5 (2-46). Most patients are still alive (19; 70.4%). Median number of drugs administered was eight (range 2-19); antiepileptics were given most frequently. Despite the lack of a clear diagnosis (and thus prognosis), 13 (48.1%) parents faced with their critically ill and clinically deteriorating children decided in favor of a DNAR order. Comparing this with 15 brain-injured children, signs, symptoms, and supportive needs were similar in both groups. CONCLUSION: Children without a clear diagnosis are relatively common in pediatric palliative care and have-like all other patients-the right to receive optimized and symptom-adapted palliative care. Parents are less likely to choose treatment limitation for children who lack a definitive diagnosis. What is Known: * A clear diagnosis is usually considered important for best-practice pediatric palliative care (PPC) including advanced care planning (ACP). * Timely initiation of pediatric palliative care (PPC) is highly recommended in children with life-limiting conditions. What is New: * SWAN (syndrome without a name) children show similar signs and symptoms (mostly neurological) and have similar supportive needs as brain-injured children. * Defining treatment limitations in advance care planning is more difficult for parents of SWAN compared to brain-injured children.
Identifier
An unambiguous reference to the resource within a given context
10.1007/s00431-017-2991-z
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
Balzer S
Borkhardt A
Children
End-of-life Care
European Journal of Pediatrics
Gagnon G
Hoell J I
Jansen G
Kuhlen M
October 2017 List
Oommen P T
Palliative Care
Trocan L
Undiagnosed Syndrome
Warfsmann J
-
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
February 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
Experiences In Palliative Home Care Of Infants With Life-limiting Conditions
Publisher
An entity responsible for making the resource available
European Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
Kuhlen M; Holl JI; Sabir H; Borkhardt A; Jansen G
Description
An account of the resource
UNLABELLED: The aim of this study was to determine the distinct issues neonates/infants with life-limiting conditions and their families face during palliative home care and to enable physicians/caregivers to carefully address their needs. Data on home-based palliative care of all neonates and infants, who were being taken care of by our paediatric palliative care team between 2007 and 2014, was analysed. A total of 31 patients (pts) were analysed. The majority of patients (n=17) were diagnosed with congenital malformations or chromosomal abnormalities. Twenty pts died, five of them in hospital. A high percentage of pts presented with swallowing incoordination (83.9%) and was fed either by nasogastric tube or percutaneous endoscopic gastrostomy. Of the pts, 71.0% were treated with analgesics, 45.2% were oxygen dependent, and 9.7% required mechanical ventilation. Highest mortality was seen in pts with perinatal complications (75%). In four (12.9%) pts, palliative home care could come to an end as their conditions substantially improved. CONCLUSIONS: Palliative treatment of neonates/very young infants with terminal conditions at home seems to be similar to that of older children and feasible in children even with unstable conditions. The spectrum of diagnoses, signs and symptoms varies from older children with swallowing incoordination and artificial nutrition being of particular importance.
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).
2016
Borkhardt A
European Journal of Pediatrics
February 2017 List
Holl JI
Jansen G
Kuhlen M
Sabir H