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Dublin Core
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Title
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April 2020 List
Text
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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
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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>
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).
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