1
40
8
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Dublin Core
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Title
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April 2024 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 2024
URL Address
<a href="http://doi.org/10.3390/children11020234" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children11020234</a>
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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 Use of Cannabinoids in Pediatric Palliative Care-A Retrospective Single-Center Analysis
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
child; Palliative Care; diagnosis; article; female; human; male; retrospective study; Cannabinoids; spasticity; epilepsy; quality of life; outpatient; palliative therapy; pain; anxiety; clinical article; school child; human tissue; side effect; adolescent; therapy; drug dose increase; drug combination; drug therapy; nausea; adverse drug reaction; pediatric patient; loss of appetite; paresis; restlessness; special situation for pharmacovigilance; cannabinoid; add on therapy; decreased appetite
Creator
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Tagsold D; Toni I; Trollmann R; Woelfle J; Gravou-Apostolatou C
Description
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This data analysis aimed to systematically analyze a pediatric patient population with a life-limiting disease who were administered cannabinoids. It was a retrospective single-center analysis of patients under supervision of the specialized outpatient pediatric palliative care (SOPPC) team at the Department of Pediatrics and Adolescent Medicine of the Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU). Thirty-one patients with a primary diagnosis of neuropediatric, oncologic, metabolic, and cardiologic categories were included. The indications we identified were spasticity, pain, restlessness, anxiety, loss of appetite, epilepsy, and paresis. Certain aspects of quality of life were improved for 20 of 31 patients (64.5%). For nine patients (29%), no improvement was detected. No conclusions could be drawn for two patients (6.5%). Adverse events were reported for six of the thirty-one patients (19.4%). These were graded as mild, including symptoms such as restlessness, nausea, and behavioral issues. We detected no clinically relevant interactions with other medications. We collected fundamental data on the use of cannabinoids by pediatric palliative patients. Cannabinoids are now frequently administered in pediatric palliative care. They seem to be safe to use and should be considered an add-on therapy for other drug regimens.
Identifier
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<a href="http://doi.org/10.3390/children11020234" target="_blank" rel="noreferrer noopener">10.3390/children11020234</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).
2024
add on therapy
Adolescent
Adverse Drug Reaction
anxiety
April List 2024
Article
Cannabinoid
Cannabinoids
Child
Children
Clinical Article
decreased appetite
Diagnosis
drug combination
drug dose increase
Drug Therapy
Epilepsy
Female
Gravou-Apostolatou C
Human
Human Tissue
Loss Of Appetite
Male
Nausea
Outpatient
Pain
Palliative Care
Palliative Therapy
paresis
pediatric patient
Quality Of Life
restlessness
Retrospective Study
School Child
Side Effect
Spasticity
special situation for pharmacovigilance
Tagsold D
Therapy
Toni I
Trollmann R
Woelfle J
-
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 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
April 2020 List
URL Address
<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7040054/" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s10072-019-04099-5</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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Palliative care in 9 children with neurodegeneration with brain iron accumulation
Publisher
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Neurological Sciences
Date
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2020
Subject
The topic of the resource
article; body mass; bone density; bone strength; botulinum toxin; child; clinical article; contracture; controlled study; densitometry; dystonia; facilitation; female; femur; home care; Hospice and Palliative Care Nursing; human; hypersalivation; iron; ketogenic diet; male; multidisciplinary team; neurodegeneration with brain iron accumulation; pain; palliative therapy; pathologic fracture; prevention; questionnaire; school child; skeleton; spasticity; spine; thorax
Creator
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Dangel T; Kmiec T; Januszaniec A; Wazny B
Description
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Aim: Evaluation of pediatric palliative home care of families with children suffering from neurodegeneration with brain iron accumulation (NBIA) and their parents. Material and methods: The children were treated at home by a multidisciplinary team. Densitometry was used to evaluate the condition of the skeletal system. Botulinum toxin was injected into the muscles in doses between 22 and 50 units/kg. The quality of palliative care was assessed on the basis of a specially designed questionnaire for parents. Results: The observations were performed on a group of 9 patients with NBIA. On admission, the median age of patients was 9 years (7-14). The average time of palliative home care was 1569 days (34 days-17 years). The median age at death (6 patients) was 11 years (7-15). The botulinum toxin injections gave the following results: reduction of spasticity and dystonia, reduction of spine and chest deformation, relief of pain and suffering, facilitation of rehabilitation and nursing, prevention of permanent contractures, and reduction of excessive salivation. Bone mineral density and bone strength index were reduced. Two patients experienced pathological fracture of the femur. The body mass index at admission varied between 9.8 and 14.9. In 7 cases, introduction of a ketogenic diet resulted in the increase of body mass and height. The ketogenic diet did not worsen the neurological symptoms. The parents positively evaluated the quality of care. Conclusion: Palliative home care is the optimal form of treatment for children with NBIA.
Identifier
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7040054/" target="_blank" rel="noreferrer noopener">10.1007/s10072-019-04099-5</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).
2020
April 2020 List
Article
body mass
Bone Density
bone strength
botulinum toxin
Child
Clinical Article
contracture
Controlled Study
Dangel T
Densitometry
Dystonia
facilitation
Female
femur
Home Care
Hospice And Palliative Care Nursing
Human
hypersalivation
iron
Januszaniec A
ketogenic diet
Kmiec T
Male
Multidisciplinary team
neurodegeneration with brain iron accumulation
Neurological Sciences
Pain
Palliative Therapy
pathologic fracture
Prevention
Questionnaire
School Child
skeleton
Spasticity
Spine
Thorax
Wazny B
-
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
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/10.1016/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
An entity primarily responsible for making the resource
Kuhlen M; Hoell J I; Gagnon G; Balzer S; Oommen P T; Borkhardt A; Janßen G
Description
An account of the resource
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>
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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
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
-
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/10.1016/j.ejpn.2017.09.003" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ejpn.2017.09.003</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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Intrathecal baclofen treatment an option in X-linked adrenoleukodystrophy
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
The topic of the resource
quality of life; pain; limited mobility; priority journal; school child; spasticity; fatigue; clinical examination; human; article; child; male; clinical article; dystonia; case report; 1309378-01-5 (botulinum toxin A); 1638949-86-6 (botulinum toxin A); 1800016-51-6 (botulinum toxin A); 93384-43-1 (botulinum toxin A); 1134-47-0 (baclofen); adrenoleukodystrophy/dt [Drug Therapy]; adrenoleukodystrophy/su [Surgery]; baclofen/dt [Drug Therapy]; baclofen/po [Oral Drug Administration]; baclofen/tl [Intrathecal Drug Administration]; X chromosome linked disorder/dt [Drug Therapy]; X chromosome linked disorder/su [Surgery]; Addison disease; adrenoleukodystrophy/dt [Drug Therapy]; balance disorder; behavior change; bladder dysfunction; botulinum toxin A; clonus; diplopia; drug dose increase; hearing disorder; hyperpigmentation; intrathecal pump; leukodystrophy; range of motion; strabismus; urinary catheter; visual disorder; X chromosome linked disorder/dt [Drug Therapy]; tone and motor problems; X-linked adrenoleukodystrophy; pharmacologic interventions; intrathecal baclofen; baclofen
Creator
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Hjartarson H T; Ehrstedt C; Tedroff K
Description
An account of the resource
Background X-linked adrenoleukodystrophy (X-ALD) is a genetic peroxisomal disorder associated with tissue accumulation of very long chain fatty acids (VLCFAs). In approximately one third of affected males, this causes progressive and irreversible damage to the brain white matter. Progress is often rapid with upper motor neuron damage leading to severe spasticity and dystonia. The increased muscle tone is frequently difficult to alleviate with oral drugs. Here, we describe two patients with X-ALD who have received treatment with intrathecal baclofen pumps (ITB). Case study Both boys had a rapidly progressive cerebral form of the disorder resulting, among other things, in escalating spasticity and dystonia causing severe pain, dramatically reducing their quality of life. Both were treated with a variety of oral medications without adequate relief. Both patients tolerated ITB surgery without complications and the positive clinical effects of treatment with ITB became clear in the following weeks and months, with significantly reduced muscle tone, less pain and better sleep. Moreover, general caretaking became easier. Conclusion The treatment of spasticity and dystonia in these patients is difficult partly due to the relentless nature of this progressive disorder. In our two patients, ITB has been effective from both a symptomatic and palliative perspective. We recommend that such treatment be considered as an early option for increased muscle tone in boys with the cerebral form of X-ALD.
Identifier
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<a href="http://doi.org/10.1016/j.ejpn.2017.09.003" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2017.09.003</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).
1134-47-0 (baclofen)
1309378-01-5 (botulinum toxin A)
1638949-86-6 (botulinum toxin A)
1800016-51-6 (botulinum toxin A)
2018
93384-43-1 (botulinum toxin A)
Addison disease
adrenoleukodystrophy/dt [Drug Therapy]
adrenoleukodystrophy/su [Surgery]
Article
baclofen
Baclofen/dt [drug Therapy]
baclofen/po [Oral Drug Administration]
baclofen/tl [Intrathecal Drug Administration]
balance disorder
behavior change
bladder dysfunction
botulinum toxin A
Case Report
Child
Clinical Article
clinical examination
clonus
diplopia
drug dose increase
Dystonia
Ehrstedt C
European Journal of Paediatric Neurology
Fatigue
hearing disorder
Hjartarson H T
Human
hyperpigmentation
intrathecal baclofen
intrathecal pump
Leukodystrophy
limited mobility
Male
Pain
pharmacologic interventions
Priority Journal
Quality Of Life
Range of Motion
School Child
Spasticity
strabismus
Tedroff K
tone and motor problems
urinary catheter
visual disorder
X chromosome linked disorder/dt [Drug Therapy]
X chromosome linked disorder/su [Surgery]
X-linked adrenoleukodystrophy
-
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/10.1016/j.ejpn.2016.09.006" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ejpn.2016.09.006</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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Effect of selective dorsal rhizotomy on daily care and comfort in non-walking children and adolescents with severe spasticity
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
2017
Subject
The topic of the resource
adolescent; risk factor; medical history; follow up; satisfaction; school child; comfort; cerebral palsy; congenital malformation; human; pain; child; controlled study; clinical article; attention; dystonia; dorsal rhizotomy; scoliosis; leg muscle; tone and motor problems; lipidoses; surgical intervention; selective dorsal rhizotomy; spasticity
Creator
An entity primarily responsible for making the resource
Buizer A I; van Schie P E M; Bolster E A M; van Ouwerkerk W J; Strijers R L; van de Pol L A; Stadhouder A; Becher J G; Vermeulen R J
Description
An account of the resource
Background In non-walking children with severe spasticity, daily care can be difficult and many patients suffer from pain. Selective dorsal rhizotomy (SDR) reduces spasticity in the legs, and therefore has the potential to improve daily care and comfort. Aim To examine effects of SDR on daily care and comfort in non-walking children with severe spasticity due to different underlying neurological conditions. Methods Medical history, changes in daily care and comfort and satisfaction with outcome were assessed retrospectively in non-walking children who underwent SDR in our center, with a mean follow-up of 1y 7m (range 11m-4y 3m). All eligible patients (n = 24, years 2009-2014) were included. Results Mean age at SDR was 12y 4m (SD 4y 3m, range 2y 8m-19y 3m). Associated orthopaedic problems were frequent. Seven patients underwent scoliosis correction in the same session. Most improvements were reported in dressing (n = 16), washing (n = 12) and comfort (n = 10). Median score for satisfaction was 7 on a scale of 10 (range 1-9). SDR resulted in reduction of spasticity in leg muscles. In nine patients dystonia was recorded post-operatively, mainly in children with congenital malformations and syndromes. Interpretation SDR is a single event intervention that can improve daily care and comfort in non-walking children with severe spasticity, and can safely be combined with scoliosis correction. Despite the improvements, satisfaction is variable. Careful attention is necessary for risk factors for dystonia, which may be unmasked after SDR. Copyright © 2016 European Paediatric Neurology Society
Identifier
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<a href="http://doi.org/10.1016/j.ejpn.2016.09.006" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2016.09.006</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
Adolescent
Attention
Becher J G
Bolster E A M
Buizer A I
Cerebral Palsy
Child
Clinical Article
Comfort
Congenital Malformation
Controlled Study
dorsal rhizotomy
Dystonia
European Journal of Paediatric Neurology
Follow Up
Human
leg muscle
lipidoses
Medical History
Pain
risk factor
Satisfaction
School Child
scoliosis
selective dorsal rhizotomy
Spasticity
Stadhouder A
Strijers R L
surgical intervention
tone and motor problems
van de Pol L A
van Ouwerkerk W J
van Schie P E M
Vermeulen R J
-
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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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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
n/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
Challenging neurological symptoms in paediatric palliative care: An approach to symptom evaluation and management in children with neurological impairment.
Publisher
An entity responsible for making the resource available
Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Agitation; Dystonia; Irritability; Paediatrics; Palliative Care; Spasticity
Creator
An entity primarily responsible for making the resource
Rasmussen LA; Gregoire Marie-Claude
Description
An account of the resource
Neurological symptoms are very common in children with life-limiting conditions and are challenging in terms of burden of illness. Moreover, neurological symptoms can significantly impact the child's quality of life and contribute to distress among parents, families, caregivers and health care providers. Knowing how to manage and alleviated these symptoms is essential for providing good palliative care. In the present article, the more common neurological symptoms of agitation/irritability, spasticity and dystonia will be reviewed. The aim of the present brief review is to provide a basic approach to both the identification and treatment of these neurological symptoms. A medication table is provided for quick reference. A brief commentary and guidance for the management of pain are also incorporated, with reference to further literature sources.
Identifier
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403283/" target="_blank" rel="noreferrer">PMC4403283</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).
2015
Agitation
Dystonia
Gregoire Marie-Claude
Irritability
Paediatrics
Paediatrics & Child Health
Palliative Care
Rasmussen LA
Spasticity
-
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 2017 List
URL Address
http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=emex&AN=618183528
Notes
<p>Using Smart Source Parsing<br />(pp Date of Publication: 2017</p>
Dublin Core
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Title
A name given to the resource
Late Effects of Treatment and Palliative Care
Publisher
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Pediatric Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Central Nervous System Tumor; Palliative Therapy; 59-05-2 (methotrexate); 69-74-9 (cytarabine); 147-94-4 (cytarabine); 154-93-8 (carmustine); 7413-34-5 (methotrexate); 15475-56-6 (methotrexate); 15663-27-1 (cisplatin); 26035-31-4 (cisplatin); 96081-74-2 (cisplatin); Advance Care Planning; Appetite Disorder; Bone Density; Brain Tumor; Carmustine; Childhood Cancer Survivor; Cisplatin; Constipation; Corticosteroid; Cytarabine; Diarrhea; Dyspnea; Endocrine Disease; Fatigue; Genetic Polymorphism; Health Care Quality; Human; Incidence; Medical Decision Making; Medulloblastoma; Methotrexate; Morbidity; Mortality Rate; Nausea And Vomiting; Neuroectoderm Tumor; Neuropathic Pain; Neuropsychological Test; Pain Assessment; Patient Care; Phase 1 Clinical Trial (topic); Priority Journal; Psychosocial Disorder; Quality Of Life; Questionnaire; Radiation Injury; Respiration Depression; Seizure; Signal Transduction; Spasticity
Creator
An entity primarily responsible for making the resource
Chang E; Goldsby R; Mueller S; Banerjee A
Description
An account of the resource
Identifying late effects of treatment and integrating palliative care when appropriate are increasingly recognized as important elements of childhood tumor management. Patients with CNS tumors are at a high risk for mortality, and survivors have high morbidity rates related to the late effects of treatment. While intensified therapy has improved average 5-year survival in patients with pediatric brain tumors to 73 % (Ostrom et al. 2014) from less than 60 % in 1975-1979 (Linabery and Ross 2008), it has also increased the long-term consequences. Survivors may develop a spectrum of late effects ranging from subtle memory loss and cosmetic anomalies to severe neurological disabilities and recurrent neoplasms. While seemingly quite different, both palliative and late-effects care focus on improving quality of life for patients and need to be integrated into the overall care plan.
Identifier
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10.1007/978-3-319-30789-3_17
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).
147-94-4 (cytarabine)
154-93-8 (carmustine)
15475-56-6 (methotrexate)
15663-27-1 (cisplatin)
2017
26035-31-4 (cisplatin)
59-05-2 (methotrexate)
69-74-9 (cytarabine)
7413-34-5 (methotrexate)
96081-74-2 (cisplatin)
Advance Care Planning
Appetite Disorder
Banerjee A
Bone Density
Brain Tumor
Carmustine
Central Nervous System Tumor
Chang E
Childhood Cancer Survivor
Cisplatin
Constipation
Corticosteroid
Cytarabine
Diarrhea
Dyspnea
Endocrine Disease
Fatigue
Genetic Polymorphism
Goldsby R
Health Care Quality
Human
Incidence
Medical Decision Making
Medulloblastoma
Methotrexate
Morbidity
Mortality Rate
Mueller S
Nausea And Vomiting
Neuroectoderm Tumor
Neuropathic Pain
Neuropsychological Test
November 2017 List
Pain Assessment
Palliative Therapy
Patient Care
Pediatric Oncology
Phase 1 Clinical Trial (topic)
Priority Journal
Psychosocial Disorder
Quality Of Life
Questionnaire
Radiation Injury
Respiration Depression
Seizure
Signal Transduction
Spasticity
-
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 2017 List
URL Address
https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0036-1583746
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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Family-oriented Palliative Care: Parents' Perspective And Experience
Publisher
An entity responsible for making the resource available
Neuropediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Family Study; Palliative Therapy; Brain Damage; Child; Chromosome Disorder; Chromosome Disorders; Complication; Controlled Study; Dyspnea; Gene Deletion; Hospice; Hospital; Human; Length Of Stay; Life Expectancy; Medical Service; Metabolic Disorder; Neuromuscular Disease; Only Child; Pain; Palliative Care; Quality Of Life; Seizure; Spasticity; Spiritual Care; Symptom
Creator
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Pietz J
Description
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Palliative care is needed for children with neurodegenerative and progressive neuromuscular diseases, inborn genetic (e.g., chromosomal disorders, deletion syndromes) or metabolic disorders, as well as for children with early brain lesions which can decrease life-expectancy due to complications. Care for children with life-shortening diseases is a major challenge for parents and the whole family. A vast majority of families prefer to live at home with their severely sick child, and they also want to avoid admissions to hospital and stay at their familiar environment for the final period of life. To cope with all these demands, many families need a lot of support. By means of early integration of palliative perspective and care support can be adapted to the needs of the child and the family. Many children are living at home with their parents for many years. In many cases, quality of life and a stable familiar environment can be assured only by substantial external assistance. Support by specialized palliative care teams (SAPV), hospices and hospice services is able to unburden families. Important tasks are continuous and 24-hour medical services for symptom control (regarding e.g., pain, dyspnea, seizures, spasticity) as well as psychological, emotional, social and spiritual care for patients and all other family members.
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DOI: 10.1055/s-0036-1583746
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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
Brain Damage
Child
Chromosome Disorder
Chromosome Disorders
Complication
Controlled Study
Dyspnea
Family Study
Gene Deletion
Hospice
Hospital
Human
June 2017 List
Length Of Stay
Life Expectancy
Medical Service
Metabolic Disorder
Neuromuscular Disease
Neuropediatrics
Only Child
Pain
Palliative Care
Palliative Therapy
Pietz J
Quality Of Life
Seizure
Spasticity
Spiritual Care
Symptom