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40
6
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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
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.2015.09.002" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ejpn.2015.09.002</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
Development of global rating instruments for pediatric patients with ataxia telangiectasia
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
2016
Subject
The topic of the resource
Male; Child; Humans; Adolescent; Female; Child Preschool; Severity of Illness Index; Pediatrics/mt [Methods]; Ataxia Telangiectasia/di [Diagnosis]; Ataxia Telangiectasia/ep [Epidemiology]; tone and motor problems; ataxia telangiectasia; tool development; scale development; ICARS; SARA; Brief Ataxia Rating Scale
Creator
An entity primarily responsible for making the resource
Nissenkorn A; Borgohain R; Micheli R; Leuzzi V; Hegde A U; Mridula K R; Molinaro A; D'Agnano D; Yareeda S; Ben-Zeev B
Description
An account of the resource
INTRODUCTION: Ataxia telangiectasia (AT) is a neurodegenerative disorder with cerebellar and extrapyramidal features. Interventional and epidemiological studies in AT should rely on specific scales which encompass the specific neurological features, as well the early progressive course and the subsequent plateau. The aim of this study was to build a scale of the CGI type (Clinical Global Impression) which is disease specific, as well as to check the feasibility of the ICARS scale for ataxia in this population. METHODS: We recruited 63 patients with ataxia, aged 10.76 +/- 3.2 years, followed at 6 international AT centers, 49 of them (77.8%) with classical AT. All patients were evaluated for ataxia with ICARS scale. In patients with AT, two CGI scales were scored, unstructured as structured for which separate anchors were provided. RESULTS: Mean ICARS score was 44.7 +/- 20.52, and it's severity positively correlated with age (Spearman correlation, r = 0.46, p < 0.01). Mean CGI score was 2 (moderately involved). There was a high correlation between the structured and unstructured CGIs (Spearman correlation, r = 0.87, p < 0.01). Both CGI scales showed positive correlation between severity and increasing age (Spearman correlation r = 0.59, p < 0.01 for structured CGI and r = 0.61, p < 0.01 for unstructured). DISCUSSION: We succeeded to build two CGI scales: structured and unstructured, which are disease specific for AT. The unstructured scale showed better connection to disease course; the sensitivity of the unstructured scale could be improved by adding anchors related to extrapyramidal features. In addition we showed that ataxia can be reliably measured in children with AT by using ICARS.Copyright © 2015 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejpn.2015.09.002" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2015.09.002</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).
2016
Adolescent
ataxia telangiectasia
ataxia telangiectasia/di [Diagnosis]
Ataxia Telangiectasia/ep [Epidemiology]
Ben-Zeev B
Borgohain R
Brief Ataxia Rating Scale
Child
Child Preschool
D'Agnano D
European Journal of Paediatric Neurology
Female
Hegde A U
Humans
ICARS
Leuzzi V
Male
Micheli R
Molinaro A
Mridula K R
Nissenkorn A
Pediatrics/mt [methods]
SARA
scale development
Severity Of Illness Index
tone and motor problems
tool development
Yareeda S
-
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 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
April 2019 List
URL Address
<a href="http://doi.org/10.1186/s12904-015-0054-7" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1186/s12904-015-0054-7</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
Paediatric palliative care: recommendations for treatment of symptoms in the Netherlands
Publisher
An entity responsible for making the resource available
BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Netherlands; Palliative Care/st [Standards]; Humans; Palliative Care/mt [Methods]; Pediatrics/st [Standards]; Pediatrics/mt [Methods]; Health Planning Guidelines; Consensus; Caregivers
Creator
An entity primarily responsible for making the resource
Knops RR; Kremer L C; Verhagen AA; Dutch Paediatric Palliative Care Guideline Group for Symptoms
Description
An account of the resource
BACKGROUND: Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high quality palliative care, clinical practice guidelines are needed. The aim of this study is to improve palliative care for children by making high quality care recommendations to recognize and relieve symptoms in paediatric palliative care. METHODS: An extensive search was performed for guidelines and systematic reviews on paediatric palliative care up to year 2011. An expert panel combined the evidence with consensus to form recommendations on the treatment of symptoms in paediatric palliative care. RESULTS: We appraised 21 guidelines and identified 693 potentially eligible articles of which four met our inclusion criteria. None gave recommendations on the treatment of symptoms in paediatric palliative care. Two textbooks and an adult palliative care website were eventually our main sources of evidence. CONCLUSION: Hardly any evidence is available for the treatment of symptoms in paediatric palliative care. By combining evidence for adult palliative care and the sparse evidence for paediatric palliative care with expert opinion we defined a unique set of high quality care recommendations to relieve symptoms and lessen the suffering of children in palliative care. These results are an important tool to educate caregivers on how to relieve symptoms in children in paediatric palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-015-0054-7" target="_blank" rel="noreferrer noopener">10.1186/s12904-015-0054-7</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).
2015
April 2019 List
BMC Palliative Care
Caregivers
Consensus
Dutch Paediatric Palliative Care Guideline Group for Symptoms
Health Planning Guidelines
Humans
Knops RR
Kremer L C
Netherlands
Palliative Care/mt [methods]
Palliative Care/st [standards]
Pediatrics/mt [methods]
Pediatrics/st [standards]
Verhagen AA
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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
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2012-2394" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-2394</a>
<a href="http://pediatrics.aappublications.org/content/early/2013/02/05/peds.2012-2394" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/early/2013/02/05/peds.2012-2394</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
Pediatric Advance Care Planning: A Systematic Review
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Humans; Palliative Care; end of life; Pediatric; advance care planning; DNAR; Pediatrics/td [Trends]; Advance Care Planning/td [Trends]; pediatric advance life support [PALS]; Pediatrics/mt [Methods]; Randomized Controlled Trials as Topic/mt [Methods]
Creator
An entity primarily responsible for making the resource
Lotz JD; Jox RJ; Borasio GD; Führer M
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Advance care planning (ACP) is increasingly regarded as the gold standard in the care of patients with life-limiting illnesses. Research has focused on adults, but ACP is also being practiced in pediatrics. We conducted a systematic review on empirical literature on pediatric ACP (pACP) to assess current practices, effects, and perspectives of pACP. METHODS: We searched PubMed, BELIT, and PSYCinfo for empirical literature on pACP, published January 1991 through January 2012. Titles, abstracts, and full texts were screened by 3 independent reviewers for studies that met the predefined criteria. The evidence level of the studies was assessed. Relevant study outcomes were retrieved according to predefined questions. RESULTS: We included 5 qualitative and 8 quantitative studies. Only 3 pACP programs were identified, all from the United States. Two of them were informed by adult programs. Major pACP features are discussions between families and care providers, as well as advance directives. A chaplain and other providers may be involved if required. Programs vary in how well they are evaluated; only 1 was studied by using a randomized controlled trial. Preliminary data suggest that pACP can successfully be implemented and is perceived as helpful. It may be emotionally relieving and facilitate communication and decision-making. Major challenges are negative reactions from emergency services, schools, and the community. CONCLUSIONS: There are few systematic pACP programs worldwide and none in Europe. Future research should investigate the needs of all stakeholders. In particular, the perspective of professionals has so far been neglected.
2013-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2012-2394" target="_blank" rel="noreferrer">10.1542/peds.2012-2394</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).
Type
The nature or genre of the resource
Journal Article
2013
Advance Care Planning
Advance Care Planning/td [Trends]
Backlog
Borasio GD
Child
DNAR
End Of Life
Führer M
Humans
Journal Article
Jox RJ
Lotz JD
Palliative Care
Pediatric
pediatric advance life support [PALS]
Pediatrics
Pediatrics/mt [methods]
Pediatrics/td [trends]
Randomized Controlled Trials as Topic/mt [Methods]
-
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
May 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
A Pilot Study Of The Effectiveness Of Home Teleconsultations In Paediatric Palliative Care
Publisher
An entity responsible for making the resource available
Journal Of Telemedicine & Telecare
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Caregivers/px [psychology]; Palliative Care/mt [methods]; Pediatrics/mt [methods]; Quality Of Life; Remote Consultation/ut [utilization]; Adult; Caregivers; Cohort Studies; Female; Health Services Accessibility; Humans; Male; Middle Aged; Outcome And Process Assessment (health Care); Palliative Care; Palliative Care/st [standards]; Patient Satisfaction; Pediatrics/st [standards]; Pilot Projects; Prospective Studies; Referral And Consultation; Rural Population
Creator
An entity primarily responsible for making the resource
Bradford N; Young J; Armfield NR; Bensink ME; Pedersen LA; Herbert A; Smith AC
Description
An account of the resource
We conducted a pilot study to investigate the effectiveness of a home telehealth service for paediatric palliative care consultations. Over a 10 week period, 14 of the 17 caregivers approached to be part of the study agreed to participate. Families were allocated, non-randomly, to a control group (usual care) or an intervention group (usual care with the addition of home telehealth consultations). The primary outcome measure was quality-of-life score. Caregivers were surveyed for up to 99 days following recruitment. A descriptive analysis of the quality-of-life data showed no differences between caregivers in the two groups. However, important lessons were learnt regarding factors which influence the success of studies in this population group, and the domains of caregiver quality-of-life that warrant intervention. Palliative care is complex, and multiple interventions and supports are required if care is to be managed at home. Home telehealth consultations are a feasible and acceptable means of facilitating a palliative care consultation which can reduce the burden on families at a distressing time.
Identifier
An unambiguous reference to the resource within a given context
10.1258/jtt.2012.gth103
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).
2012
Adult
Armfield NR
Bensink ME
Bradford N
Caregivers
Caregivers/px [psychology]
Cohort Studies
Female
Health Services Accessibility
Herbert A
Humans
Journal of Telemedicine & Telecare
Male
May 2017 List
Middle Aged
Outcome And Process Assessment (health Care)
Palliative Care
Palliative Care/mt [methods]
Palliative Care/st [standards]
Patient Satisfaction
Pedersen LA
Pediatrics/mt [methods]
Pediatrics/st [standards]
Pilot Projects
Prospective Studies
Quality Of Life
Referral And Consultation
Remote Consultation/ut [utilization]
Rural Population
Smith AC
Young 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
September 2017 List
Notes
<p>Jamieson, Liz Wong, Ian C K Craig, Finella Christiansen, Nanna Brombley, Karen Tuleu, Catherine Harrop, Emily</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
A name given to the resource
Palliative Medicines For Children - A New Frontier In Paediatric Research
Publisher
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Journal Of Pharmacy & Pharmacology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Biomedical Research/mt [methods]; Palliative Care/mt [methods]; Palliative Medicine/mt [methods]; Pediatrics/mt [methods]; Pharmaceutical Preparations/ad [administration & Dosage]; 0 (pharmaceutical Preparations); Biomedical Research/td [trends]; Child; Drug Delivery Systems/mt [methods]; Humans; Palliative Care/td [trends]; Palliative Medicine/td [trends]; Pediatrics/td [trends]
Creator
An entity primarily responsible for making the resource
Jamieson L; Wong I C; Craig F; Christiansen N; Brombley K; Tuleu C; Harrop E
Description
An account of the resource
OBJECTIVES: This paper seeks to highlight from a UK perspective the current lack of a research evidence base in paediatric palliative care that has resulted in a paucity of available medicines with appropriate formulations (strength and dosage form) to provide symptom management for children with life-limiting illnesses and to raise awareness of this group of 'therapeutic orphans'. Currently, clinicians have limited, often unsuitable medication choices for their paediatric palliative care patients, with little hope of moving away from the status quo. KEY FINDINGS: Most medicines used in children receiving palliative care are old and off-patent drugs, developed for and tested in an adult population. Many are not available in suitable formulations (dosage form and strength) for administration to children, and there are often no age-related profiles of adverse drug reactions or for safe dosing. SUMMARY: Existing regional paediatric palliative care networks and support organisations should lobby funding bodies and the academic community to support appropriate research for this group of therapeutic orphans. Support must also be provided to pharmaceutical companies in the development of suitable products with appropriate formulations.
Identifier
An unambiguous reference to the resource within a given context
10.1111/jphp.12615
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).
0 (pharmaceutical Preparations)
2017
Biomedical Research/mt [methods]
Biomedical Research/td [trends]
Brombley K
Child
Christiansen N
Craig F
Drug Delivery Systems/mt [methods]
Harrop E
Humans
Jamieson L
Journal of Pharmacy & Pharmacology
Palliative Care/mt [methods]
Palliative Care/td [trends]
Palliative Medicine/mt [methods]
Palliative Medicine/td [trends]
Pediatrics/mt [methods]
Pediatrics/td [trends]
Pharmaceutical Preparations/ad [administration & Dosage]
September 2017 List
Tuleu C
Wong I C
-
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
September 2017 List
Notes
<p>Henderson, Carrie M FitzGerald, Michael Hoehn, K Sarah Weidner, Norbert 1049909115609294</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
A name given to the resource
Pediatrician Ambiguity In Understanding Palliative Sedation At The End Of Life
Publisher
An entity responsible for making the resource available
American Journal Of Hospice And Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Conscious Sedation/mt [methods]; Palliative Care/mt [methods]; Pediatrics/mt [methods]; Terminal Care/mt [methods]; Adult; Aged; Child; Female; Health Knowledge Attitudes Practice; Humans; Male; Middle Aged; Pediatrics/sn [statistics & Numerical Data]; Practice Patterns Physicians'/sn [statistics & Numerical Data]; Surveys And Questionnaires
Creator
An entity primarily responsible for making the resource
Henderson C M; FitzGerald M; Hoehn K S; Weidner N
Description
An account of the resource
CONTEXT: Palliative sedation is a means of relieving intractable symptoms at the end of life, however, guidelines about its use lack consistency. In addition, ethical concerns persist around the practice. There are reports of palliative sedation in the pediatric literature, which highlight various institutional perspectives. OBJECTIVES: This survey of 4786 pediatric providers sought to describe their knowledge of and current practices around pediatric palliative sedation. METHODS: Our survey was administered to pediatricians who care for children at the end of life. The survey assessed agreement with a definition of palliative sedation, as well as thoughts about its alignment with aggressive symptom management. Bivariate analyses using chi<sup>2</sup> and analysis of variance were calculated to determine the relationship between responses to closed-ended questions. Open-ended responses were thematically coded by the investigators and reviewed for agreement. RESULTS: Nearly half (48.6%) of the respondents indicated that the stated definition of palliative sedation "completely" reflected their own views. Respondents were split when asked if they viewed any difference between palliative sedation and aggressive symptom management: Yes (46%) versus No (54%). Open-ended responses revealed specifics about the nature of variation in interpretation. CONCLUSIONS: Responses point to ambiguity surrounding the concept of palliative sedation. Pediatricians were concerned with a decreased level of consciousness as the goal of palliative sedation. Respondents were split on whether they view palliative sedation as a distinct entity or as one broad continuum of care, equivalent to aggressive symptom management. Institutional-based policies are essential to clarify acceptable practice, enable open communication, and promote further research.
Identifier
An unambiguous reference to the resource within a given context
10.1177/1049909115609294
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).
2017
Adult
Aged
American Journal of Hospice and Palliative Medicine
Child
Conscious Sedation/mt [methods]
Female
FitzGerald M
Health Knowledge Attitudes Practice
Henderson C M
Hoehn K S
Humans
Male
Middle Aged
Palliative Care/mt [methods]
Pediatrics/mt [methods]
Pediatrics/sn [statistics & Numerical Data]
Practice Patterns Physicians'/sn [statistics & Numerical Data]
September 2017 List
Surveys And Questionnaires
Terminal Care/mt [methods]
Weidner N