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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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September 2020 List
Text
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September 2020 List
URL Address
<a href="http://doi.org/10.1089/jpm.2020.0148" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2020.0148</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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A Tool for the Evaluation of Clinical Needs and Eligibility to Pediatric Palliative Care: The Validation of the ACCAPED Scale
Publisher
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Journal of palliative medicine
Date
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2020
Subject
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assessment; clinical needs; palliative pediatric care; pediatric palliative care; validation
Creator
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Lazzarin P; Giacomelli L; Terrenato I; Benini F
Description
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Background: Despite their importance, pediatric palliative care (PPC) services are still scantly diffused. In addition, eligibility criteria for PPC are quite complex. Consequently, clinicians require a tool that suggests how to refer patients with life-limiting diseases to the most appropriate service and how to properly allocate health care resources. Objective(s): Recently, the Accertamento dei bisogni Clinico-Assistenziali Complessi in PEDiatria (ACCAPED) scale has been developed by a group of experts in PPC to evaluate the specific clinical needs of pediatric patients with a life-limiting disease. This study presents the validation of the ACCAPED scale. Design(s): Validation of ACCAPED scale was pursued by means of description and analysis of clinical vignettes representing patients with challenging-to-evaluate needs who have to be referred to the most appropriate service (community care, general PPC, and specialized PPC). The evaluation of vignettes according to the clinical experience of the experts represented the gold standard against which the validity of the ACCAPED scale was tested by groups with different levels of experience (experts, pediatricians, and health care providers (HCPs) not involved in PPC). Result(s): Results show a very high concordance between the evaluation of the vignettes through the ACCAPED scale and the evaluation by the clinical experience for experts in PPC and pediatricians. A less favorable grade of concordance has been recorded for HCPs not involved in PPC, suggesting that educational efforts to improve basic knowledge of PPC within the medical community are needed. Conclusion(s): Overall, this study suggests that the ACCAPED scale is a useful tool to improve rationalization of resources and eligibility criteria for PPC.
Identifier
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<a href="http://doi.org/10.1089/jpm.2020.0148" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0148</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).
2020
Assessment
Benini F
clinical needs
Giacomelli L
Journal of Palliative Medicine
Lazzarin P
palliative pediatric care
Pediatric Palliative Care
September 2020 List
Terrenato I
VALIDATION
-
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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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="http://doi.org/10.1183/13993003.congress-2019.PA639" target="_blank" rel="noreferrer noopener">http://doi.org/10.1183/13993003.congress-2019.PA639</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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Paediatric long-term home ventilation: Should we rethink social inclusion for these children?
Publisher
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European Respiratory Journal
Date
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2019
Subject
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adolescent; artificial ventilation; assisted ventilation; attention; child; conference abstract; female; human; major clinical study; male; medical record review; neuromuscular disease; noninvasive ventilation; palliative therapy; retrospective study; school child; school dropout; secondary health care; social exclusion; social needs; tracheostomy
Creator
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Benedetti F; Agosto C; Divisic A; Rusalen F; Moro N; Pellizzon M; Ometto M; Grigolon E; Lazzarin P; Benini F
Description
An account of the resource
Background: over the last 30 yrs, many studies have investigated long-term ventilatory support (LTVS), focusing primary on medical issues. Few researches have focused on social burden for families with a child in need of LTVS. Objectives: aim of the study was to analyze the social needs of children and families living with home LTVS and highlights signs of social exclusion. Methods: retrospective medical records review of children on home LTVS, followed by our Regional Paediatric Palliative Care Network. According to Wallis and Jardine we defined paediatric LTVS as “any child below the age of 17 who is medically stable and requires a mechanical aid for breathing either invasively by tracheostomy or by non-invasive mask interface for all, or part of the day.” We extended the age to 23 yrs. The following data were adopted as signs of social exclusion: absence of secondary care-giver (meaning the child must be with the same person throughout the day), abandon of work by a parent, no chance for family holiday, school dropout. Results: among 87 patients, 33 cases are ventilated invasively and 54 with Non-invasive Ventilation. Median age is 9,5 yrs; 52% of the children are affected by a neuromuscular disease, 21% being permanently enticed. Thirty-seven (42,5%) children don’t have a secondary care-giver, in 41 families one parent abandoned work and 12 children experienced school dropout. Conclusions: Children and families living with home LTVS have special needs not only in the medical field but also in the social one. Our data confirm that these children are at high risk for exclusion from the society and suggest more attention on these aspects which represent significant challenge for clinicians.
Identifier
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<a href="http://doi.org/10.1183/13993003.congress-2019.PA639" target="_blank" rel="noreferrer noopener">10.1183/13993003.congress-2019.PA639</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).
2019
Adolescent
Agosto C
April 2020 List
Artificial Ventilation
assisted ventilation
Attention
Benedetti F
Benini F
Child
conference abstract
Divisic A
European Respiratory Journal
Female
Grigolon E
Human
Lazzarin P
Major Clinical Study
Male
Medical Record Review
Moro N
Neuromuscular Disease
Noninvasive Ventilation
Ometto M
Palliative Therapy
Pellizzon M
Retrospective Study
Rusalen F
School Child
school dropout
secondary health care
social exclusion
social needs
Tracheostomy