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Dublin Core
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Title
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February 2020 List
Text
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February 2020 List
URL Address
<a href="http://doi.org/10.1007/s00431-019-03467-9" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00431-019-03467-9</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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Facing the large variety of life-limiting conditions in children
Publisher
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European Journal of Pediatrics
Date
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2019
Subject
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pediatric palliative care; symptom clusters; TfSL; Together for short lives
Creator
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Hoell J I; Weber H; Warfsmann J; Trocan L; Gagnon G; Danneberg M; Balzer S; Keller T; Janßen G; Kuhlen M
Description
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Life-limiting conditions in children in specialized pediatric palliative care (PPC) are manifold. The "Together for Short Lives" (TfSL) association established four disease categories, which represent the most common illness trajectories. Better understanding the palliative care needs and symptoms of children within these TfSL groups will result in improved anticipation of clinical problems and tailored care. During this retrospective single-center cohort study, 198 children, adolescents, and young adults (CAYAs) were in PPC. Mean age at referral was 8.7 years (range 0.0-25.0), mean duration of care 355 days (range 1-2754). One hundred six (53.5%) CAYAs died during the study period. Sixty-five (32.8%) CAYAs were assigned to TfSL-1, 13 (6.6%) to TfSL-2, 49 (24.7%) to TfSL-3, and 71 (35.9%) to TfSL-4. Home visits were conducted on average every 9.6 days in TfSL-1, 18.9 days in TfSL-2, 31.7 days in TfSL-3, and 31.8 days in TfSL-4 (p value < 0.01).Conclusions: Intensity of palliative care significantly differed between the TfSL groups. Neurological and gastrointestinal symptoms were most prominent across all TfSL groups. Symptom cluster analysis showed distinct clusters in TfSL-1 (cluster 1, fatigue/lack of appetite/nausea/somnolence; cluster 2, dyspnea/fear/myoclonus/seizures/spasticity) and TfSL-3/4 (cluster 1, spasticity; cluster 2, all other symptoms).What is Known:• The four TfSL (together for short lives) groups represent the four most common illness trajectories of pediatric palliative care patients.• Better understanding the palliative care needs and symptoms of children within these four TfSL groups will result in improved anticipation of clinical problems and tailored care.What is New:• In our study, TfSL-1 represented the largest individual group of patients, also requiring the most intensive care (defined by the number of visits per days of care).• Symptom cluster analysis revealed distinct symptom clusters in TfSL-1 and TfSL-3/4, which can be used to anticipate clinically common challenges in these patients.
Identifier
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<a href="http://doi.org/10.1007/s00431-019-03467-9" target="_blank" rel="noreferrer noopener">10.1007/s00431-019-03467-9</a>
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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).
2019
Balzer S
Danneberg M
European Journal of Pediatrics
February 2020 List
Gagnon G
Hoell J I
Janßen G
Keller T
Kuhlen M
Pediatric Palliative Care
symptom clusters
TfSL
Together for short lives
Trocan L
Warfsmann J
Weber H
-
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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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
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URL Address
<a href="http://doi.org/10.1016/j.ejpn.2016.07.021" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ejpn.2016.07.021</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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Effective treatment of spasticity using dronabinol in pediatric palliative care
Publisher
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European Journal of Paediatric Neurology
Date
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2016
Subject
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tone and motor problems; Chromosome 18q deletion; Lissencephaly Type 1; Metachromatic Leukodystrophy; NCL3; pharmacologic intervention; dronabinol; spasticity
Creator
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Kuhlen M; Hoell J I; Gagnon G; Balzer S; Oommen P T; Borkhardt A; Janßen G
Description
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BACKGROUND: Cannabis extracts have a wide therapeutic potential but in many countries they have not been approved for treatment in children so far. OBJECTIVE: We conducted an open, uncontrolled, retrospective study on the administration of dronabinol to determine the value, efficacy, and safety of cannabis-based medicines in the treatment of refractory spasticity in pediatric palliative care. DESIGN AND PARTICIPANTS: Sixteen children, adolescents and young adults having complex neurological conditions with spasticity (aged 1.3-26.6 years, median 12.7 years) were treated with dronabinol by our specialized pediatric palliative care team between 01.12.2010 and 30.04.2015 in a home-care setting. Therapeutic efficacy and side effects were closely monitored. RESULTS: Drops of the 2.5% oily tetrahydrocannabinol solution (dronabinol) were administered. A promising therapeutic effect was seen, mostly due to abolishment or marked improvement of severe, treatment resistant spasticity (n = 12). In two cases the effect could not be determined, two patients did not benefit. The median duration of treatment was 181 days (range 23-1429 days). Dosages to obtain a therapeutic effect varied from 0.08 to 1.0 mg/kg/d with a median of 0.33 mg/kg/d in patients with a documented therapeutic effect. When administered as an escalating dosage scheme, side effects were rare and only consisted in vomiting and restlessness (one patient each). No serious and enduring side effects occurred even in young children and/or over a longer period of time. CONCLUSIONS: In the majority of pediatric palliative patients the treatment with dronabinol showed promising effects in treatment resistant spasticity.
Identifier
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<a href="http://doi.org/10.1016/j.ejpn.2016.07.021" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2016.07.021</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).
2016
Balzer S
Borkhardt A
chromosome 18q deletion
dronabinol
European Journal of Paediatric Neurology
Gagnon G
Hoell J I
Janßen G
Kuhlen M
Lissencephaly Type 1
Metachromatic Leukodystrophy
NCL3
Oommen P T
pharmacologic intervention
Spasticity
tone and motor problems