1
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
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August 2023 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
August List 2023
URL Address
<a href="http://doi.org/10.1007/s00431-023-05030-z" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-023-05030-z</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
Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data
Publisher
An entity responsible for making the resource available
European Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Cohort Studies; Belgium; Terminal Care; terminal care; article; female; human; major clinical study; male; palliative therapy; pediatrics; cohort analysis; physician; nuclear magnetic resonance imaging; health care system; general practitioner; decision making; bereavement; computer assisted tomography; congenital disorder; drawing; administrative health data; genetic association; genetic disorder; empirical research; paramedical personnel; X ray
Creator
An entity primarily responsible for making the resource
Piette V; Deliens L; Debulpaep S; Cohen J; Beernaert K
Description
An account of the resource
Abstract This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing children (1-17) who died with genetic and congenital conditions in Belgium between 2010 and 2017. We measured 22 quality indicators, face-validated using a previously published RAND/UCLA methodology. Appropriateness of care was defined as the overall "expected health benefit" of given healthcare interventions within a healthcare system exceeding expected negative outcomes. In the 8-year study period, 200 children were identified to have died with genetic and congenital conditions. Concerning appropriateness of care, in the last month before death, 79% of children had contact with specialist physicians, 17% had contact with a family physician, and 5% received multidisciplinary care. Palliative care was used by 17% of the children. Concerning inappropriateness of care, 51% of the children received blood drawings in the last week before death, and 29% received diagnostics and monitoring (2 or more magnetic resonance imaging scans, computed tomography scans, or X-rays) in the last month. Conclusion: Findings suggest end-of-life care could be improved in terms of palliative care, contact with a family physician and paramedics, and diagnostics and monitoring in the form of imaging. What is Known: • Previous studies suggest that end-of life care for children with genetic and congenital conditions may be subject to issues with bereavement, psychological concerns for child and family, financial cost at the end of life, decision-making when using technological interventions, availability and coordination of services, and palliative care provision. Bereaved parents of children with genetic and congenital conditions have previously evaluated end-of-life care as poor or fair, and some have reported that their children suffered a lot to a great deal at the end of life. • However, no peer-reviewed population-level quality evaluation of end-of-life care for this population is currently present. What is New: • This study provides an evaluation of the appropriateness of end-of-life care for children who died in Belgium with genetic and congenital conditions between 2010 and 2017, using administrative healthcare data and validated quality indicators. The concept of appropriateness is denoted as relative and indicative within the study, not as a definitive judgement. • Our study suggests improvements in end-of-life care may be possible, for instance, in terms of the provision of palliative care, contact with care providers next to the specialist physician, and diagnostics and monitoring in terms of imaging (e.g., magnetic resonance imaging, computed tomography scans). Further empirical research is necessary, for instance, into unforeseen and foreseen end-of-life trajectories, to make definitive conclusions about appropriateness of care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-023-05030-z" target="_blank" rel="noreferrer noopener">10.1007/s00431-023-05030-z</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).
2023
administrative health data
Article
August List 2043
Beernaert K
Belgium
Bereavement
Child
Cohen J
Cohort Analysis
Cohort Studies
computer assisted tomography
congenital disorder
Debulpaep S
Decision Making
Deliens L
Drawing
Empirical Research
European Journal of Pediatrics
Female
General Practitioner
genetic association
Genetic Disorder
Health Care System
Human
Major Clinical Study
Male
nuclear magnetic resonance imaging
Palliative Therapy
paramedical personnel
Pediatrics
Physician
Piette V
Terminal Care
X ray
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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/10.1080/10673220601082869" target="_blank" rel="noreferrer">http://doi.org/10.1080/10673220601082869</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
Empirical evidence for the use of lithium and anticonvulsants in children with psychiatric disorders
Publisher
An entity responsible for making the resource available
Harvard Review Of Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Humans; Anticonvulsants/therapeutic use; Empirical Research; Amines/therapeutic use; Cyclohexanecarboxylic Acids/therapeutic use; gamma-Aminobutyric Acid/therapeutic use; Antimanic Agents/therapeutic use; Carbamazepine/analogs & derivatives/therapeutic use; Drug Therapy/statistics & numerical data; Fructose/analogs & derivatives/therapeutic use; Lithium Carbonate/therapeutic use; Mental Disorders/drug therapy/epidemiology; Triazines/therapeutic use; Valproic Acid/therapeutic use
Creator
An entity primarily responsible for making the resource
Lopez-Larson M; Frazier JA
Description
An account of the resource
BACKGROUND: The use of psychotropic medications-in particular, mood stabilizers--in youths with psychiatric illness has grown. There are trends toward polypharmacy and the increased use of newer mood stabilizers in youths with psychiatric illness despite a paucity of studies examining the short- and long-term efficacy and safety of these agents in the pediatric population. METHOD: PubMed was used to identify peer-reviewed publications from the past 30 years (January 1975 to August 2005) studying lithium and anticonvulsants in youths with psychiatric illness. RESULTS: Evidence supporting the use of lithium and valproate in the treatment of juvenile bipolar disorder and reactive aggression has grown. Evidence for the use of other anticonvulsants in youths with psychiatric illness is sparse. Side effects from lithium and anticonvulsants are typically mild to moderate. Data are accumulating in regard to the longer-term safety of lithium and DVPX in the juvenile psychiatric population. Although data in regard to the newer anticonvulsants are limited, they may have more desirable side-effect profiles. CONCLUSION: Double-blind, placebo-controlled trials of lithium and anticonvulsants are greatly needed as clinical use of these agents has risen without sufficient evidence supporting their efficacy in the pediatric population.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/10673220601082869" target="_blank" rel="noreferrer">10.1080/10673220601082869</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).
Type
The nature or genre of the resource
Journal Article
2006
Amines/therapeutic use
Anticonvulsants/therapeutic use
Antimanic Agents/therapeutic use
Backlog
Carbamazepine/analogs & derivatives/therapeutic use
Child
Cyclohexanecarboxylic Acids/therapeutic use
Drug Therapy/statistics & numerical data
Empirical Research
Frazier JA
Fructose/analogs & derivatives/therapeutic use
gamma-Aminobutyric Acid/therapeutic use
Harvard Review Of Psychiatry
Humans
Journal Article
Lithium Carbonate/therapeutic use
Lopez-Larson M
Mental Disorders/drug therapy/epidemiology
Triazines/therapeutic use
Valproic Acid/therapeutic use
-
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/10.1089/jpm.2005.8.s-148" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2005.8.s-148</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
Ethical considerations in end-of-life care and research
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Humans; Mental Competency; Reproducibility of Results; Research; Ethics; quality of life; Palliative Care/ethics; Psychological; Stress; Multi-site Ethics; Decision Making/ethics; Empirical Research; Human Experimentation/ethics; Research Subjects; Terminal Care/ethics; Beneficence
Creator
An entity primarily responsible for making the resource
Casarett D
Description
An account of the resource
The goal of good palliative care is to relieve suffering and to improve quality of life. However, it is clear that access to palliative care is inconsistent. At least in part, these deficiencies exist because of a lack of solid evidence on which to base clinical decisions. Therefore, there is an urgent need for research that can define the standard of care and can increase access to quality care. This paper discusses six ethical aspects of end-of-life research that investigators and clinicians should consider in designing and conducting palliative care research. These include: (1) whether a study is research or quality improvement; (2) the study's potential benefits to future patients; (3) the study's potential benefits to subjects; (4) the study's risks to subjects; (5) subjects' decision-making capacity; and (6) the voluntariness of subjects' choices to participate in research.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2005.8.s-148" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.s-148</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).
Type
The nature or genre of the resource
Journal Article
2005
Backlog
Beneficence
Casarett D
Decision Making/ethics
Empirical Research
Ethics
Human Experimentation/ethics
Humans
Journal Article
Journal of Palliative Medicine
Mental Competency
Multi-site Ethics
Palliative Care/ethics
Psychological
Quality Of Life
Reproducibility of Results
Research
Research Subjects
Stress
Terminal Care/ethics
-
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/10.1016/s0749-0690(05)70016-1" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0749-0690(05)70016-1</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
Physician-older patient communication at the end of life.
Publisher
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Clinics In Geriatric Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Female; Humans; Male; Aged; Communication; Patient Participation; Truth Disclosure; Time Factors; Advance Directive Adherence; advance care planning; DNAR; Attitude to Death; Advance Directives; Physician-Patient Relations; Terminal Care/mt [Methods]; Empirical Research; Palliative Care/mt [Methods]
Creator
An entity primarily responsible for making the resource
Siegler EL; Levin BW
Description
An account of the resource
Communication with dying patients and their families requires special skills to assist them in this extremely stressful period. This article begins with a case that illustrates many of the challenges of communicating with the dying. It then reviews the literature about communication with older patients at the end of life, focusing on physician-patient discussions, decision-making, advance directives, and cultural factors. The article concludes with a practical discussion of problems that physicians may encounter when working with older patients at the end of life and their families and recommendations to improve communication.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0749-0690(05)70016-1" target="_blank" rel="noreferrer">10.1016/s0749-0690(05)70016-1</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).
Type
The nature or genre of the resource
Journal Article
2000
Advance Care Planning
Advance Directive Adherence
Advance Directives
Aged
Attitude To Death
Backlog
Clinics In Geriatric Medicine
Communication
DNAR
Empirical Research
Female
Humans
Journal Article
Levin BW
Male
Palliative Care/mt [methods]
Patient Participation
Physician-patient Relations
Siegler EL
Terminal Care/mt [methods]
Time Factors
Truth Disclosure
-
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/10.1056/nejm200001203420312" target="_blank" rel="noreferrer">http://doi.org/10.1056/nejm200001203420312</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
Rethinking the role of tube feeding in patients with advanced dementia
Publisher
An entity responsible for making the resource available
The New England Journal Of Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Humans; United States; Medical Futility; Withholding Treatment; Euthanasia; Religion and Medicine; Risk Assessment; Medical; Mental Health Therapies; Professional Patient Relationship; Death and Euthanasia; decision making; Pneumonia; Psychological; Stress; Legislation; Passive; Empirical Research; Alzheimer Disease/therapy; Aspiration/prevention & control; Dementia/therapy; Enteral Nutrition/adverse effects/standards; 'Physical'; Restraint
Creator
An entity primarily responsible for making the resource
Gillick MR
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1056/nejm200001203420312" target="_blank" rel="noreferrer">10.1056/nejm200001203420312</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2000
'Physical'
2000
Alzheimer Disease/therapy
Aspiration/prevention & control
Backlog
Death and Euthanasia
Decision Making
Dementia/therapy
Empirical Research
Enteral Nutrition/adverse effects/standards
Euthanasia
Gillick MR
Humans
Journal Article
Legislation
Medical
Medical Futility
Mental Health Therapies
Passive
Pneumonia
Professional Patient Relationship
Psychological
Religion and Medicine
Restraint
Risk Assessment
Stress
The New England Journal Of Medicine
United States
Withholding Treatment
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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/10.1056/NEJM200002243420805" target="_blank" rel="noreferrer">http://doi.org/10.1056/NEJM200002243420805</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
Clinical problems with the performance of euthanasia and physician-assisted suicide in The Netherlands
Publisher
An entity responsible for making the resource available
The New England Journal Of Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Female; Humans; Male; Adult; Data Collection; Aged; Middle Aged; Euthanasia; Netherlands; Suicide; 80 and over; Empirical Approach; Death and Euthanasia; Active; Random Allocation; Euthanasia/statistics & numerical data; Empirical Research; Assisted/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Groenewoud JH; van der Heide A; Onwuteaka-Philipsen BD; Willems DL; van der Maas PJ; van der Wal G
Description
An account of the resource
BACKGROUND AND METHODS: The characteristics and frequency of clinical problems with the performance of euthanasia and physician-assisted suicide are uncertain. We analyzed data from two studies of euthanasia and physician-assisted suicide in The Netherlands (one conducted in 1990 and 1991 and the other in 1995 and 1996), with a total of 649 cases. We categorized clinical problems as technical problems, such as difficulty inserting an intravenous line; complications, such as myoclonus or vomiting; or problems with completion, such as a longer-than-expected interval between the administration of medications and death. RESULTS: In 114 cases, the physician's intention was to provide assistance with suicide, and in 535, the intention was to perform euthanasia. Problems of any type were more frequent in cases of assisted suicide than in cases of euthanasia. Complications occurred in 7 percent of cases of assisted suicide, and problems with completion (a longer-than-expected time to death, failure to induce coma, or induction of coma followed by awakening of the patient) occurred in 16 percent of the cases; complications and problems with completion occurred in 3 percent and 6 percent of cases of euthanasia, respectively. The physician decided to administer a lethal medication in 21 of the cases of assisted suicide (18 percent), which thus became cases of euthanasia. The reasons for this decision included problems with completion (in 12 cases) and the inability of the patient to take all the medications (in 5). CONCLUSIONS: There may be clinical problems with the performance of euthanasia and physician-assisted suicide. In The Netherlands, physicians who intend to provide assistance with suicide sometimes end up administering a lethal medication themselves because of the patient's inability to take the medication or because of problems with the completion of physician-assisted suicide.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1056/NEJM200002243420805" target="_blank" rel="noreferrer">10.1056/NEJM200002243420805</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).
Type
The nature or genre of the resource
Journal Article
2000
80 And Over
Active
Adult
Aged
Assisted/statistics & numerical data
Backlog
Data Collection
Death and Euthanasia
Empirical Approach
Empirical Research
Euthanasia
Euthanasia/statistics & numerical data
Female
Groenewoud JH
Humans
Journal Article
Male
Middle Aged
Netherlands
Onwuteaka-Philipsen BD
Random Allocation
Suicide
The New England Journal Of Medicine
van der Heide A
van der Maas PJ
van der Wal G
Willems DL