1
40
147
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March 2024 List
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March List 2024
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<a href="http://doi.org/10.1097/ANC.0000000000001143" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/ANC.0000000000001143</a>
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Palliative Care in the Neonatal Intensive Care Unit: An Evolutionary Concept Analysis of Uncertainty in Anticipated Loss
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Advances in Neonatal Care
Date
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2024
Subject
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concept analysis; neonatal intensive care unit; newborn intensive care; palliative therapy; uncertainty; article; complication; confusion; diagnosis; drug administration; genetic disorder; genetic screening; human; infant; Infant Newborn; neonatal nurse; nurse; Palliative Care; prognosis
Creator
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Lenington K; Dudding KM; Fazeli PL; Dick T; Patrician P
Description
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Background: Although the concepts of uncertainty and anticipated loss have been explored in a variety of contexts, advances in genetic testing and life-sustaining technology rendered changes in the care of medically complex infants. The separate concepts no longer have the descriptive power to clarify new phenomena endured by parents in the changing neonatal landscape. A current concept analysis examining uncertainty in anticipated loss is necessary to generate knowledge concurrently with deviations observed in the neonatal intensive care unit. Purpose: To explore the concept of uncertainty in anticipated loss among parents of infants with genetic disorders. Methods: Following Rodgers' method of concept analysis, the concept was named, surrogate terms, antecedents, attributes, and consequences were identified from the literature, and a model case was constructed. The databases CINAHL, PubMed, and PsycINFO were used to conduct the literature search. Results: Fifteen articles provided the data for this analysis. Uncertainty in anticipated loss is a complex, nonlinear, and multifaceted experience anteceded by an ultimately terminal diagnosis, an ambiguous prognosis, and a lack of clear knowledge to guide treatment. Its attributes include a loss of control, assumptive world remodeling, role/identity confusion, and prolonged emotional complexity that consequently leads to a cyclical pattern of positive and negative outcomes. Implications: This newly defined concept empowers neonatal nurses to provide care that includes a holistic understanding of the experience of uncertainty in anticipated loss. Nurses are ideally positioned and have the responsibility to utilize this concept to become better advocates for infants and facilitators of parental wellness.
Identifier
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<a href="http://doi.org/10.1097/ANC.0000000000001143" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000001143</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
Advances in Neonatal Care
Article
Complication
Concept analysis
Confusion
Diagnosis
Dick T
Drug Administration
Dudding KM
Fazeli PL
Genetic Disorder
genetic screening
Human
Infant
Infant Newborn
Lenington K
March List 2024
Neonatal Intensive Care Unit
Neonatal Nurse
Newborn Intensive Care
Nurse
Palliative Care
Palliative Therapy
Patrician P
Prognosis
Uncertainty
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Title
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February 2024 List
Text
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February List 2024
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<a href="http://doi.org/10.1016/j.jped.2023.09.009" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jped.2023.09.009</a>
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Title
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Implementing Palliative care, based on family-centered care, in a highly complex neonatal unit
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Jornal de Pediatria
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; terminal care; prognosis; neonatal intensive care unit; newborn death; congenital malformation; observational study; mortality; transitional care; cause of death; intimacy
Creator
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Morillo PA; Clotet CJ; Camprubi CM; Blanco DE; Silla GJ; Riverola de Veciana A
Description
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Objective To describe the causes and circumstances of neonatal mortality and determine whether the implementation of a palliative care protocol has improved the quality of end-of-life care. Methods A retrospective observational study including all patient mortalities between January 2009 and December 2019. Cause of death and characteristics of support during the dying process were collected. Two periods, before and after the implementation of a palliative care protocol, were compared. Results There were 344 deaths. Congenital malformations were the most frequent cause of death (45.6 %). Most patients died after the transition to palliative care (74.4 %). The most frequently cited criteria for initiating transition of care was poor neurocognitive prognosis (47.2 %). Parents accompanied their children in the dying process in 72 % of cases. Twenty-three percent of patients died outside the Neonatal Intensive Care Unit after being transferred to a private room to enhance family intimacy. After the addition of the palliative care protocol, statistically significant differences were observed in the support and patient experience during the dying process. Conclusions The most frequent causes of death were severe congenital malformations. Most patients died accompanied by their parents after the transition to palliative care. The implementation of a palliative care protocol helped to improve the family-centered end-of-life care.
Identifier
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<a href="http://doi.org/10.1016/j.jped.2023.09.009" target="_blank" rel="noreferrer noopener">10.1016/j.jped.2023.09.009</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).
2023
Article
Blanco DE
Camprubi CM
Cause Of Death
Child
Clotet CJ
Congenital Malformation
Controlled Study
February List 2024
Female
Human
intimacy
Jornal De Pediatria
Major Clinical Study
Male
Morillo PA
Mortality
Neonatal Intensive Care Unit
Newborn Death
Observational Study
Palliative Therapy
Prognosis
Retrospective Study
Riverola de Veciana A
Silla GJ
Terminal Care
Transitional Care
-
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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February 2024 List
Text
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February List 2024
URL Address
<a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/14651858.CD014873.pub2</a>
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Title
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A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments
Publisher
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Cochrane Database of Systematic Reviews
Date
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2023
Subject
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Humans; Child; child; Adolescent; Quality of Life; human; inflammatory bowel disease; quality of life; Family; chronic pain; social support; family; child parent relation; social work; prognosis; systematic review; sibling; Chronic Pain; Analgesics Opioid; ethnography; Anthropology Cultural; personal experience; cultural anthropology; outcome assessment; health care personnel; wellbeing; health service; disease severity; adolescent; social isolation; headache; analgesia; pediatric patient; abdominal pain; social care; peer group; patient-reported outcome; pain assessment; Review; racism; narcotic analgesic agent; pain severity; fibromyalgia; complex regional pain syndrome; endometriosis; family life; juvenile rheumatoid arthritis; migraine; musculoskeletal pain
Creator
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France E; Uny I; Turley R; Thomson K; Noyes J; Jordan A; Forbat L; Caes L; Silveira Bianchim M
Description
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Background: Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of life, and leads to increased use of healthcare services and medication. In many countries, there are few services for managing children’s chronic non-cancer pain, with many services being inadequate. Fourteen Cochrane Reviews assessing the effects of pharmacological, psychological, psychosocial, dietary or physical activity interventions for managing children’s chronic non-cancer pain identified a lack of high-quality evidence to inform pain management. To design and deliver services and interventions that meet the needs of patients and their families, we need to understand how children with chronic non-cancer pain and their families experience pain, their views of services and treatments for chronic pain, and which outcomes are important to them. Objectives: 1. To synthesise qualitative studies that examine the experiences and perceptions of children with chronic non-cancer pain and their families regarding chronic non-cancer pain, treatments and services to inform the design and delivery of health and social care services, interventions and future research. 2. To explore whether our review findings help to explain the results of Cochrane Reviews of intervention effects of treatments for children's chronic non-cancer pain. 3. To determine if programme theories and outcomes of interventions match children and their families’ views of desired treatments and outcomes. 4. To use our findings to inform the selection and design of patient-reported outcome measures for use in chronic non-cancer pain studies and interventions and care provision to children and their families. The review questions are:. 1. How do children with chronic non-cancer pain and their families conceptualise chronic pain?. 2. How do children with chronic non-cancer pain and their families live with chronic pain?. 3. What do children with chronic non-cancer pain and their families think of how health and social care services respond to and manage their child’s chronic pain?. 4. What do children with chronic non-cancer pain and their families conceptualise as ‘good’ chronic pain management and what do they want to achieve from chronic pain management interventions and services?. Search methods: Review strategy: we comprehensively searched 12 bibliographic databases including MEDLINE, CINAHL, PsycInfo and grey literature sources, and conducted supplementary searches in 2020. We updated the database searches in September 2022. Selection criteria: To identify published and unpublished qualitative research with children aged 3 months to 18 years with chronic non-cancer pain and their families focusing on their perceptions, experiences and views of chronic pain, services and treatments. The final inclusion criteria were agreed with a patient and public involvement group of children and young people with chronic non-cancer pain and their families. Data collection and analysis: We conducted a qualitative evidence synthesis using meta-ethnography, a seven-phase, systematic, interpretive, inductive methodology that takes into account the contexts and meanings of the original studies. We assessed the richness of eligible studies and purposively sampled rich studies ensuring they addressed the review questions. Cochrane Qualitative Methods Implementation Group guidance guided sampling. We assessed the methodological limitations of studies using the Critical Appraisal Skills Programme tool. We extracted data on study aims, focus, characteristics and conceptual findings from study reports using NVivo software. We compared these study data to determine how the studies related to one another and grouped studies by pain conditions for synthesis. We used meta-ethnography to synthesise each group of studies separately before synthesising them all together. Analysis and interpretation of studies involved children ith chronic non-cancer pain and their families and has resulted in theory to inform service design and delivery. Sampling, organising studies for synthesis, and analysis and interpretation involved our patient and public involvement group who contributed throughout the conduct of the review. We used the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach to assess our confidence in each review finding. We used a matrix approach to integrate our findings with existing Cochrane Reviews on treatment effectiveness for children’s chronic non-cancer pain. Main results: We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Included studies involved 633 participants. GRADE-CERQual assessments of findings were mostly high (n = 21, 58%) or moderate (n = 12, 33%) confidence with three (8%) low or very low confidence. Poorly managed, moderate or severe chronic non-cancer pain had profound adverse impacts on family dynamics and relationships; family members’ emotions, well-being, autonomy and sense of self-identity; parenting strategies; friendships and socialising; children’s education and future employment prospects; and parental employment. Most children and parents understood chronic non-cancer pain as having an underlying biological cause and wanted curative treatment. However, families had difficulties seeking and obtaining support from health services to manage their child’s pain and its impacts. Children and parents felt that healthcare professionals did not always listen to their experiences and expertise, or believe the child's pain. Some families repeatedly visited health services seeking a diagnosis and cure. Over time, some children and families gave up hope of effective treatment. Outcomes measured within trials and Cochrane Reviews of intervention effects did not include some outcomes of importance to children and families, including impacts of pain on the whole family and absence of pain. Cochrane Reviews have mainly neglected a holistic biopsychosocial approach, which specifies the interrelatedness of biological, psychological and social aspects of illness, when selecting outcome measures and considering how chronic pain management interventions work. Authors' conclusions: We had high or moderate confidence in the evidence contributing to most review findings. Further research, especially into families' experiences of treatments and services, could strengthen the evidence for low or very low confidence findings. Future research should also explore families' experiences in low- to middle-income contexts; of pain treatments including opioid use in children, which remains controversial; and of social care services. We need development and testing of family-centred interventions and services acceptable to families. Future trials of children's chronic non-cancer pain interventions should include family-centred outcomes. Copyright © 2023 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.
Identifier
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<a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener">10.1002/14651858.CD014873.pub2</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).
2023
abdominal pain
Adolescent
Analgesia
Analgesics Opioid
Anthropology Cultural
Caes L
Child
Child Parent Relation
Chronic Pain
Cochrane Database of Systematic Reviews
Complex Regional Pain Syndrome
cultural anthropology
Disease Severity
endometriosis
ethnography
Family
Family Life
February List 2024
Fibromyalgia
Forbat L
France E
Headache
Health Care Personnel
Health Service
Human
Humans
inflammatory bowel disease
Jordan A
juvenile rheumatoid arthritis
migraine
musculoskeletal pain
narcotic analgesic agent
Noyes J
outcome assessment
Pain Assessment
Pain Severity
patient-reported outcome
pediatric patient
Peer Group
Personal Experience
Prognosis
Quality Of Life
racism
Review
Sibling
Silveira Bianchim M
Social Care
Social Isolation
Social Support
Social Work
Systematic Review
Thomson K
Turley R
Uny I
Wellbeing
-
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Title
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November 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.
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November List 2023
URL Address
<a href="http://doi.org/10.1093/geronb/gbac189" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/geronb/gbac189</a>
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Gender Differences in Depressive Symptoms Following Child Death in Later
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Journals of Gerontology: Series B
Date
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2023
Subject
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Child; Female; Male; Prognosis; United States; Risk Factors; Bereavement; Parent-Child Relations; Adult; Age Factors; Mortality; Sex Factors; Middle Age; Adaptation Psychological; Fathers; Aged; Depression; Mother-Child Relations; Mothers; Human; Father-Child Relations; Evaluation; Only Child; Funding Source; Trends; Vulnerability; Psychosocial Factors; Comparative Studies; Recovery; In Adulthood; In Middle Age; In Old Age
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Mellencamp KA
Description
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Objectives: This study examined short- and long-term psychological adjustment to parental bereavement in later life for mothers and fathers. Methods: Using 9 waves of data from the United States (1998-2014 Health and Retirement Study), I estimated trajectories of mothers' and fathers' depressive symptoms surrounding child death in later life, highlighting gender differences in adjustment. Moderation analyses were performed to uncover heterogeneous trajectories across parental characteristics. Results: Mothers were more likely to experience child death and reported higher depressive symptoms prior to parental bereavement than fathers. Mothers and fathers who lost a child reported an increase in depressive symptoms that diminished over time. The short-term elevation in depressive symptoms was marginally greater for mothers than fathers, but depressive symptoms declined at a faster rate for mothers than fathers in the years following the death. These counterbalancing changes resulted in mothers and fathers returning to their respective prebereavement levels of depressive symptoms between 2 and 4 years postbereavement. Parental age moderated trajectories distinctly by gender, and the presence of surviving children buffered the impact of child death on depressive symptoms for mothers but not fathers. Discussion: Mothers more often experience child death in later life and their adjustment process differs from that of fathers, underscoring the salience of gender in shaping how older parents respond to the death of a child. Older parents and mothers without surviving children are vulnerable to prolonged elevations in depressive symptoms following the death of a child in later life.
Identifier
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<a href="http://doi.org/10.1093/geronb/gbac189" target="_blank" rel="noreferrer noopener">10.1093/geronb/gbac189</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).
2023
Adaptation Psychological
Adult
Age Factors
Aged
Bereavement
Child
Comparative Studies
Depression
Evaluation
Father-child Relations
Fathers
Female
Funding Source
Human
In Adulthood
In Middle Age
In Old Age
Journals of Gerontology Series B: Psychological Sciences & Social
Male
Mellencamp KA
Middle Age
Mortality
Mother-child Relations
Mothers
November List 2034
Only Child
Parent-child Relations
Prognosis
Psychosocial Factors
Recovery
Risk Factors
Sex Factors
Trends
United States
VULNERABILITY
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Title
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October 2023 List
Text
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October List 2023
URL Address
<a href="http://doi.org/10.1136/spcare-2023-004305" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2023-004305</a>
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Title
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Neonatal serious illness: operational definition
Publisher
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BMJ supportive & palliative care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Infant Newborn; terminal care; article; cohort analysis; controlled study; female; human; major clinical study; male; newborn; retrospective study; palliative therapy; pediatrics; infant; conversation; rank sum test; cause of death; hospital care; prognosis
Creator
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Guttmann K; Silverman R; Weintraub AS
Description
An account of the resource
OBJECTIVES: (1) To operationalise our previously published definition of neonatal serious illness by applying it to a patient cohort and (2) to evaluate timing of palliative care consultation, goals of care discussions and meeting serious illness criteria. METHOD(S): This was a retrospective chart review. Inborn neonates delivered between January 2006 and December 2020 who died prior to neonatal intensive care unit discharge were identified through EPIC query. Kruskal-Wallis and Mann-Whitney-U tests were used to compare time intervals relating to transition to serious illness across causes of death and other factors. chi2 tests were used to examine frequency of goals of care conversations by factors. RESULT(S): Eighty-eight per cent of patients met criteria for neonatal serious illness within 48 hours of life. There were no significant differences in transition to serious illness between preterm and term infants. Time to identification of serious illness varied significantly by cause of death. Palliative care was consulted for 5.7% of patients. CONCLUSION(S): All patients met criteria for serious illness early in life based on our definition. This definition may be useful for identifying neonates with serious illness in time to provide support. Additional work is needed to apply this definition prospectively to explore its utility for clinical care and research.Copyright © Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/spcare-2023-004305" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-004305</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).
2023
Article
BMJ Supportive & Palliative Care
Cause Of Death
Cohort Analysis
Controlled Study
Conversation
Female
Guttmann K
Hospital care
Human
Infant
Infant Newborn
Major Clinical Study
Male
Newborn
October List 2041
Palliative Therapy
Pediatrics
Prognosis
rank sum test
Retrospective Study
Silverman R
Terminal Care
Weintraub AS
-
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
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Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.4067/S1726-569X2023000100039" target="_blank" rel="noreferrer noopener"> http://doi.org/10.4067/S1726-569X2023000100039</a>
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Pediatric palliative medicine in Brazil: an ethical reflection of medical practice
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Acta Bioethica
Date
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2023
Subject
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child; Palliative Care; pediatrics; article; human; ethics; palliative therapy; Brazil; prognosis; uncertainty; software; physician; medical ethics; morality; medical practice; pediatric patient
Creator
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Rocha AA; Freitas L; Cesconetto J; Reboucas LC; Salomao VB; Nunes RML
Description
An account of the resource
The ethical barriers involved in the practice of pediatric palliative medicine remain high and challenging. In terms of medical ethics, attention should be paid to culture, religion and family values, in order to promote adequate care for caregivers, even in case of loss of a patient, promoting a bereavement process with less suffering. The data were qualitatively analyzed by IRAMUTEQ software, with a high degree of significance of essay responses on ethics related to palliative care in pediatrics. Discussions about prognosis, goals of care, and treatment options can be very difficult, as legally supported palliative care alternatives may diverge from the wishes of the family. We conclude that divergences exist between the application of palliative medicine and ethics regarding acceptance and end-of-life management of pediatric patients. Ethical challenges are constantly complex situations in which palliative physicians must relate legal concepts, knowledge and family values, which often conflict. The quality of palliative care depends initially on the ability of specialized professionals to identify and explain the ethical issues that generate conflict or uncertainty, in addition to raising discussions with the family about the medical, moral and legal issues surrounding the difficult situation.
Identifier
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<a href="http://doi.org/10.4067/S1726-569X2023000100039" target="_blank" rel="noreferrer noopener">10.4067/S1726-569X2023000100039</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).
2023
Acta Bioethica
Article
August List 2047
Brazil
Cesconetto J
Child
Ethics
Freitas L
Human
Medical Ethics
Medical Practice
Morality
Nunes RML
Palliative Care
Palliative Therapy
pediatric patient
Pediatrics
Physician
Prognosis
Reboucas LC
Rocha AA
Salomao VB
Software
Uncertainty
-
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
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Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1089/jpm.2022.0580" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2022.0580</a>
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Title
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Barriers to Pediatric Palliative Care: Trainee and Faculty Perspectives Across Two Academic Centers
Publisher
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Journal of Palliative Medicine
Date
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2023
Subject
The topic of the resource
child; Palliative Care; United States; article; controlled study; female; human; major clinical study; male; perception; palliative therapy; prognosis; resident; education; physician; life sustaining treatment; communication barrier; multicenter study; thematic analysis; pediatric hospital; personnel shortage
Creator
An entity primarily responsible for making the resource
Levine A; Winn PA; Fogel AH; Lelkes E; McPoland P; Agrawal AK; Bogetz JF
Description
An account of the resource
Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers to palliative care across two pediatric centers to (1) examine differences between trainees and faculty and (2) compare these data with previous studies. <br/>Method(s): A mixed-methods study was conducted in fall 2021 among pediatric trainees and faculty physicians at three pediatric hospitals in two pediatric centers in the western United States. Surveys were distributed through hospital listservs and analyzed descriptively and through inductive thematic analysis. <br/>Result(s): There were a total of 268 participants: 50 trainees and 218 faculty physicians. Of the trainees, 46% (23) were fellows and 54% (27) were pediatric residents. Trainees and faculty reported the same four most common barriers, which were consistent with previous studies: family not ready to acknowledge an incurable condition (64% trainees and 45% faculty); family preference for more life-sustaining therapies than staff (52% and 39%); uncertain prognosis (48% and 38%); and parent discomfort with possibility of hastening death (44% and 30%). Other barriers commonly reported included time constraints, staff shortages, and conflict among family about treatment goals. Language barriers and cultural differences were also cited. <br/>Conclusion(s): This study examining palliative care across two pediatric centers suggests that providers' perceptions of family preferences and understanding of illness persist as barriers to the delivery of pediatric palliative care services. Future research should examine family-centered and culturally mindful interventions to better elucidate family perspectives on their child's illness to align care.
Identifier
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<a href="http://doi.org/10.1089/jpm.2022.0580" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0580</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).
2023
Agrawal AK
Article
August List 2038
Bogetz JF
Child
Communication Barrier
Controlled Study
Education
Female
Fogel AH
Human
Journal of Palliative Medicine
Lelkes E
Levine A
Life Sustaining Treatment
Major Clinical Study
Male
McPoland P
Multicenter Study
Palliative Care
Palliative Therapy
Pediatric Hospital
Perception
personnel shortage
Physician
Prognosis
Resident
Thematic Analysis
United States
Winn PA
-
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
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/10.3389/fped.2023.1205543" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fped.2023.1205543</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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Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope
Publisher
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Frontiers in 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
Palliative Care; diagnosis; human; patient care; palliative therapy; neurology; grief; Referral and Consultation; review; consultation; fetus; shared decision making; infant; decision making; medical care; uncertainty; prenatal period; vignette; social belief; brain; counseling; encephalocele; pregnancy; prognosis
Creator
An entity primarily responsible for making the resource
Cortezzo DE; Vawter-Lee M; Shoaib A; Venkatesan C
Description
An account of the resource
Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological diagnoses due to limitations of fetal imaging, prognostic uncertainty, and variability in neurodevelopmental outcomes. In the midst of uncertainty, families are challenged with preparing a care plan for their baby while simultaneously experiencing profound grief. The paradigms of perinatal palliative care can assist with the grieving process and help frame diagnostic testing and complex decision-making within the context of a family's spiritual, cultural, and social belief system. This ultimately leads to a shared decision-making process and value driven medical care. While perinatal palliative care programs have expanded, many families faced with such diagnoses never meet with a palliative care team prior to delivery. Moreover, there is significant variability in the availability of palliative care services throughout the country. Using an illustrative vignette of a patient with a prenatally diagnosed encephalocele, this review aims to provide a basic framework of perinatal palliative care for fetal neurology diagnoses that emphasizes 1) importance of clear, consistent, and transparent communication among all subspecialists and families, 2) creation of a palliative care birth plan, 3) importance of consistent care providers and longitudinal points of contact prenatally and post-delivery, 4) close communication between the prenatal and post-natal providers to allow for optimal continuity of care, and 5) recognize that information, care plans, and goals of care often evolve over time.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3389/fped.2023.1205543" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1205543</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).
2023
August List 2029
Brain
Consultation
Cortezzo DE
Counseling
Decision Making
Diagnosis
encephalocele
Fetus
Frontiers in Pediatrics
Grief
Human
Infant
Medical Care
Neurology
Palliative Care
Palliative Therapy
Patient Care
Pregnancy
prenatal period
Prognosis
Referral And Consultation
Review
shared decision making
Shoaib A
social belief
Uncertainty
Vawter-Lee M
Venkatesan C
vignette
-
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
June 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
June 2022 List
URL Address
<a href="https://www.ejgm.co.uk/download/the-efficacy-of-educational-interventions-on-neonatal-intensive-care-unit-nurses-knowledge-and-12902.pdf">https://www.ejgm.co.uk/download/the-efficacy-of-educational-interventions-on-neonatal-intensive-care-unit-nurses-knowledge-and-12902.pdf</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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The efficacy of educational interventions on neonatal intensive care unit nurses knowledge and attitude toward neonatal palliative care
Publisher
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Electronic Journal of General Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
fatigue; Palliative Care; Infant Newborn; adult; article; controlled study; female; hospital admission; human; male; death; family; pain; chronic pain; palliative therapy; neonatal intensive care unit; nursing; prognosis; grief; anxiety; morphine; human experiment; nurse; scoring system; aggression; questionnaire; demographics; sedation; nausea and vomiting; respiration depression; care behavior; Jordan; pretest posttest design; work experience; opiate; attitude; education program; knowledge; adjuvant therapy; analgesic activity; cocaine; drowsiness; drug dependence; educational status; electrolyte disturbance; emotional deprivation; intestine; marriage; neonatal intensive care unit attitude scale; pethidine
Creator
An entity primarily responsible for making the resource
Abuhammad S; Elayyan M; El-Bashir M
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).
Identifier
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<a href="https://www.ejgm.co.uk/download/the-efficacy-of-educational-interventions-on-neonatal-intensive-care-unit-nurses-knowledge-and-12902.pdf">10.29333/ejgm/12902</a>
2023
Abuhammad S
adjuvant therapy
Adult
Aggression
analgesic activity
anxiety
Article
Attitude
care behavior
Chronic Pain
cocaine
Controlled Study
Death
Demographics
drowsiness
drug dependence
Education Program
Educational Status
El-Bashir M
Elayyan M
electrolyte disturbance
Electronic Journal of General Medicine
emotional deprivation
Family
Fatigue
Female
Grief
Hospital Admission
Human
Human Experiment
Infant Newborn
Intestine
Jordan
June 2022 List
Knowledge
Male
Marriage
Morphine
Nausea And Vomiting
Neonatal Intensive Care Unit
neonatal intensive care unit attitude scale
Nurse
Nursing
Opiate
Pain
Palliative Care
Palliative Therapy
pethidine
pretest posttest design
Prognosis
Questionnaire
Respiration Depression
scoring system
Sedation
work experience
-
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
2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.28696" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.28696</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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Shared Spiritual Beliefs between Adolescents with Cancer and Their Families
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
quality of life; Adolescent; Adult; Female; Follow-Up Studies; Humans; Male; Prognosis; Decision Making; Longitudinal Studies; Single-Blind Method; Young Adult; Cross-Sectional Studies; Family/psychology; Religion and Medicine; Spirituality; Advance Care Planning/statistics & numerical data; Adolescent Behavior; family; adolescents; cancer; congruence; spirituality; funding from the American Cancer Society to adapt/translate this protocol into; Neoplasms/psychology/therapy; Spanish. There are no other conflicts of interest to disclose.; study from the National Institutes of Health. Maureen E. Lyon is also receiving
Creator
An entity primarily responsible for making the resource
Livingston J; Cheng YI; Wang J; Tweddle M; Friebert S; Baker JN; Thompkins J; Lyon ME
Description
An account of the resource
BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology care and an integral dimension of pediatric advance care planning. PROCEDURE: As part of four-site randomized controlled trial of FACE for teens with cancer, the functional assessment of chronic illness therapy-spiritual well-being- version 4 (FACIT-Sp-EX-4) was completed independently by 126 adolescents with cancer/family dyads. The prevalence-adjusted and bias-adjusted kappa (PABAK) measured congruence on FACIT-Sp-EX-4. RESULTS: Adolescents (126) had mean age of 16.9 years, were 57% female and 79% White. Religious/spiritual classifications were: Catholic (n = 18), Protestant (n = 76), Mormon (n = 3), none/atheist (n = 22), other (n = 5), and unknown (n = 2). Agreement at item level between spiritual well-being of adolescents and families was assessed. Three items had ≥90% agreement and Excellent PABAK: "I have a reason for living," "I feel loved," "I feel compassion for others in the difficulties they are facing." Three items had <61% agreement and Poor PABAK: "I feel a sense of harmony within myself," "My illness has strengthened my faith or spiritual beliefs," "I feel connected to a higher power (or God)." Dyadic congruence was compared by social-demographics using median one-way analysis. Male family members (median = 72%) were less likely to share spiritual beliefs with their adolescent than female family members (median = 83%), P = .0194. CONCLUSIONS: Family members may not share spiritual beliefs with adolescents and may be unaware of the importance of spiritual well-being for adolescents.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.28696" target="_blank" rel="noreferrer noopener">10.1002/pbc.28696</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
2021 Special Edition - Oncology
Adolescent
Adolescent Behavior
Adolescents
Adult
Advance Care Planning/statistics & Numerical Data
Baker JN
Cancer
Cheng YI
congruence
Cross-sectional Studies
Decision Making
Family
Family/psychology
Female
Follow-up Studies
Friebert S
funding from the American Cancer Society to adapt/translate this protocol into
Humans
Livingston J
Longitudinal Studies
Lyon ME
Male
Neoplasms/psychology/therapy
Pediatric Blood & Cancer
Prognosis
Quality Of Life
Religion and Medicine
Single-Blind Method
Spanish. There are no other conflicts of interest to disclose.
Spirituality
study from the National Institutes of Health. Maureen E. Lyon is also receiving
Thompkins J
Tweddle M
Wang J
Young Adult
-
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
2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.28826" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.28826</a>
Dublin Core
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Title
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Longitudinal Understanding of Prognosis among Adolescents with Cancer
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Child; Adolescent; Female; Follow-Up Studies; Humans; Male; Parents/psychology; Prognosis; Longitudinal Studies; oncology; Surveys and Questionnaires; Communication; palliative care; psycho-oncology; psychosocial; Neoplasms/pathology/psychology/therapy; Oncologists/psychology
Creator
An entity primarily responsible for making the resource
Fisher RS; Kenney AE; Fults MZ; Manring S; Rodriguez EM; Desjardins L; Rausch JR; Young-Saleme T; Ranalli MA; Vannatta K; Compas BE; Gerhardt CA
Description
An account of the resource
OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative to parents and oncologists. METHODS: Families of adolescents (aged 10-17) were recruited at two pediatric institutions following a new diagnosis or relapse. Seventy-four adolescents, 68 mothers, and 40 fathers participated at enrollment; 76 adolescents, 69 mothers, and 35 fathers participated one year later. The adolescent's primary oncologist reported on prognosis only at enrollment. Participants rated the likelihood of the adolescent's survival in five years, as well as reporting prognosis communication and sources of information. RESULTS: Most oncologists (65%) and fathers (63%) discussed prognosis in numerical terms with the adolescent at baseline, which was greater than mother report (49%) of discussions of numerical prognosis with adolescents. Adolescents reported a better prognosis than oncologists, but comparable with mothers at diagnosis and one year. Adolescents' prognosis estimates were stable over time (P > .05). At diagnosis, adolescent-father (P = 0.025) and adolescent-oncologist (P < 0.001) discrepancies were larger for youth with advanced than non-advanced cancer. Adolescents whose parents received numerical prognosis estimates from the oncologist, and whose fathers reported providing numerical prognosis estimates had more accurate understandings of prognosis (P < 0.05). CONCLUSIONS: Adolescent prognosis estimates were comparable with those of parents at diagnosis and one year but more favorable than that of oncologists. Although additional research is needed, results suggest discrepancies in prognosis estimates between family members and oncologists, particularly for adolescents with advanced cancer.
Identifier
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<a href="http://doi.org/10.1002/pbc.28826" target="_blank" rel="noreferrer noopener">10.1002/pbc.28826</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).
2021
2021 Special Edition - Oncology
Adolescent
Child
Communication
Compas BE
Desjardins L
Female
Fisher RS
Follow-up Studies
Fults MZ
Gerhardt CA
Humans
Kenney AE
Longitudinal Studies
Male
Manring S
Neoplasms/pathology/psychology/therapy
Oncologists/psychology
Oncology
Palliative Care
Parents/psychology
Pediatric Blood & Cancer
Prognosis
Psycho-Oncology
psychosocial
Ranalli MA
Rausch JR
Rodriguez EM
Surveys And Questionnaires
Vannatta K
Young-Saleme T
-
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
November 2022 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
November 2022 List
URL Address
<a href="http://doi.org/10.1016/j.ajogmf.2022.100725" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.ajogmf.2022.100725</a>
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Title
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Patient-Centered Perinatal Palliative Care: Family Birth Plans, Outcomes, and Resource Utilization in a Diverse Cohort
Publisher
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American Journal of Obstetrics & Gynecology MFM
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Article; Child; Cohort Analysis; Comfort; Consultation; Controlled Study; Demographics; Expectation; Female; Fetus; Fetus Malformation; Hospice; Human; Income Group; Infant; Newborn; Outcome Assessment; Palliative Therapy; Postpartum Hemorrhage; Prenatal Diagnosis; Prognosis; Retrospective Study; Trisomy 13
Creator
An entity primarily responsible for making the resource
Buskmiller C; Ho S; Chen M; Gants S; Crowe E; Lopez S
Description
An account of the resource
BACKGROUND: Perinatal palliative care (PPC) is an emerging concept in fetal medicine that offers quality of life options and anticipatory grief management for families of fetuses with complex conditions. Few PPC outcomes are detailed in peer-reviewed literature. OBJECTIVE(S): We aimed to describe outcomes of PPC at UT Fetal Center and Women and Infants Services at Children's Memorial Hermann. STUDY DESIGN: This is a retrospective cohort of families receiving PPC for life-limiting fetal diagnosis, such as trisomy 13 or 18 and some major structural anomalies, between 2016 and 2020. The primary outcome was whether delivery events matched families' birth plans, including fetal/neonatal clinical course matching expectations described by consultant notes. Secondary outcomes included maternal safety outcomes, use of perinatal interventions, delivery outcomes, and resource utilization outcomes. RESULT(S): Of 187 PPC consults, delivery events matched families' plans and clinicians' expectations in 89% of cases (165/185). 39% (73/187) of families requested some perinatal interventions, 64% of whom planned postnatal comfort care even while choosing antenatal interventions. Demographics and median income were similar between families who chose some interventions and those who chose comfort care. Patients choosing any interventions had more mismatches between their plans and delivery events (19% vs 2%, p < 0.001), were more likely to change their plans (24% vs 6%, p=0.001), and not unexpectedly used more healthcare resources. They were also more likely to have intraamniotic infection and postpartum hemorrhage (9% vs 22%, p=0.02), but this was associated with mode of delivery and not choice of interventions. CONCLUSION(S): Most families' perinatal experiences matched birth plans and expectations in this PPC program. Families who desired interventions used more healthcare resources, but often did so with plans for postnatal comfort care, demonstrating insight into neonatal prognosis but achieving value-consistent goals, like meeting a live neonate. PPC was safe for maternal patients and equitable across racial, ethnic, and income groups. PPC and some perinatal interventions are options for care of the whole family in complex fetal medicine.Copyright © 2022 Elsevier Ltd. All rights reserved.
Identifier
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<a href="http://doi.org/10.1016/j.ajogmf.2022.100725" target="_blank" rel="noreferrer noopener">10.1016/j.ajogmf.2022.100725</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).
Article
Child
Female
Fetus
Infant
Newborn
2022
American Journal of Obstetrics & Gynecology MFM
Buskmiller C
Chen M
Cohort Analysis
Comfort
Consultation
Controlled Study
Crowe E
Demographics
Expectation
Fetus Malformation
Gants S
Ho S
Hospice
Human
income group
Lopez S
November 2022 List
outcome assessment
Palliative Therapy
postpartum hemorrhage
Prenatal Diagnosis
Prognosis
Retrospective Study
Trisomy 13
-
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
July 2021 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
July 2021 List
URL Address
<a href="http://doi.org/10.1186/s12904-021-00765-8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-021-00765-8</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 screening scale as a useful tool for clinicians' assessment of palliative care needs of pediatric patients: a retrospective cohort study
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
2021
Subject
The topic of the resource
Pediatrics; Prognosis; Palliative care; Pediatrician
Creator
An entity primarily responsible for making the resource
Song IG; Kwon SY; Chang YJ; Kim MS; Jeong SH; Hahn SM; Han KT; Park SJ; Choi JY
Description
An account of the resource
BACKGROUND: Although the importance of palliative care in pediatric patients has been emphasized, many health care providers have difficulty determining when patients should be referred to the palliative care team. The Paediatric Palliative Screening Scale (PaPaS) was developed as a tool for screening pediatric patients for palliative care needs. The study aimed to evaluate the PaPaS as a reliable tool for primary care clinicians unfamiliar with palliative care. METHODS: This was a retrospective cohort study of patients referred to the pediatric palliative care teams in two tertiary hospitals in the Republic of Korea between July 2018 and October 2019. RESULTS: The primary clinical and pediatric palliative care teams assessed the PaPaS scores of 109 patients, and both teams reported a good agreement for the sum of the PaPaS score. Furthermore, the PaPaS scores correlated with those obtained using the Lansky performance scale. Although the mean PaPaS score was higher in the pediatric palliative care team, the scores were higher than the cut-off score for referral in both groups. CONCLUSION: The PaPaS can be a useful tool for primary care clinicians to assess the palliative care needs of patients and their families.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-021-00765-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-021-00765-8</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).
2021
BMC Palliative Care
Chang YJ
Choi JY
Hahn SM
Han KT
Jeong SH
July 2021 List
Kim MS
Kwon SY
Palliative Care
Park SJ
Pediatrician
Pediatrics
Prognosis
Song IG
-
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 2021 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 2021 List
URL Address
<a href="http://doi.org/10.1007/s00431-020-03801-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00431-020-03801-6</a>
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Title
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COVID-19 Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection in children and adolescents: a systematic review of critically unwell children and the association with underlying comorbidities
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
2021
Subject
The topic of the resource
Paediatric; Adolescent; Child; Comorbidity; Humans; Risk Factors; Severity of Illness Index; Prognosis; Critical Illness; Covid-19; Global Health; Comorbidities; Critically unwell; Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2); COVID-19/diagnosis/epidemiology
Creator
An entity primarily responsible for making the resource
Williams N; Radia T; Harman K; Agrawal P; Cook J; Gupta A
Description
An account of the resource
Data show that children are less severely affected with SARS-Covid-19 than adults; however, there have been a small proportion of children who have been critically unwell. In this systematic review, we aimed to identify and describe which underlying comorbidities may be associated with severe SARS-CoV-2 disease and death. The study protocol was in keeping with Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. A total of 1726 articles were identified of which 28 studies fulfilled the inclusion criteria. The 28 studies included 5686 participants with confirmed SARS-CoV-2 infection ranging from mild to severe disease. We focused on the 108 patients who suffered from severe/critical illness requiring ventilation, which included 17 deaths. Of the 108 children who were ventilated, the medical history was available for 48 patients. Thirty-six of the 48 patients (75%) had documented comorbidities of which 11/48 (23%) had pre-existing cardiac disease. Of the 17 patients who died, the past medical history was reported in 12 cases. Of those, 8/12 (75%) had comorbidities.Conclusion: Whilst only a small number of children suffer from COVID-19 disease compared to adults, children with comorbidities, particularly pre-existing cardiac conditions, represent a large proportion of those that became critically unwell. What is Known: • Children are less severely affected by SARS-CoV-2 than adults. • There are reports of children becoming critically unwell with SARS-CoV-2 and requiring intensive care. What is New: • The majority of children who required ventilation for SARS-CoV-2 infection had underlying comorbidities. • The commonest category of comorbidity in these patients was underlying cardiac disease.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-020-03801-6" target="_blank" rel="noreferrer noopener">10.1007/s00431-020-03801-6</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).
2021
Adolescent
Agrawal P
April 2021 List
Child
Comorbidities
Comorbidity
Cook J
COVID-19
COVID-19/diagnosis/epidemiology
Critical Illness
Critically unwell
European Journal of Pediatrics
Global Health
Gupta A
Harman K
Humans
Paediatric
Prognosis
Radia T
Risk Factors
Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)
Severity Of Illness Index
Williams N
-
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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2020 Oncology 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
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.020" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.04.020</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
Racial and Ethnic Differences in Communication and Care for Children With Advanced Cancer
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
pediatric; prognosis; cancer; end-of-life; disparities; communication
Creator
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Mack J W; Uno H; Twist C J; Bagatell R; Rosenberg A R; Marachelian A; Granger M M; Glade Bender J; Baker J N; Park J R; Cohn S L; Fernandez J H; Diller L R; Shusterman S
Description
An account of the resource
Context: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer. Objective(s): To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer. Method(s): We conducted a prospective cohort study at nine pediatric cancer centers enrolling 95 parents (42% racial/ethnic minorities) of children with poor prognosis cancer (relapsed/refractory high-risk neuroblastoma). Parents were surveyed about whether prognosis was discussed; likelihood of cure; intent of current treatment; and primary goal of care. Medical records were used to identify high-intensity medical care since the most recent recurrence. Logistic regression evaluated differences between white non-Hispanic and minority (black, Hispanic, and Asian/other race) parents. Result(s): About 26% of parents recognized the child's low likelihood of cure. Minority parents were less likely to recognize the poor prognosis (odds ratio [OR] = 0.19; 95% CI = 0.06-0.63; P = 0.006) and the fact that current treatment was unlikely to offer cure (OR = 0.07; 95% CI = 0.02-0.27; P < 0.0001). Children of minority parents were more likely to experience high-intensity medical care (OR = 3.01; 95% CI = 1.29-7.02; P = 0.01). After adjustment for understanding of prognosis, race/ethnicity was no longer associated with high-intensity medical care (adjusted odds ratio = 2.14; 95% CI = 0.84-5.46; P = 0.11), although power to detect an association was limited. Conclusion(s): Parental understanding of prognosis is limited across racial and ethnic groups; racial and ethnic minorities are disproportionately affected. Perhaps as a result, minority children experience higher rates of high-intensity medical care. Work to improve prognostic understanding should include focused work to meet needs of minority populations. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.020" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.020</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
Bagatell R
Baker J N
Cancer
Cohn S L
Communication
Diller L R
Disparities
end-of-life
Fernandez J H
Glade Bender J
Granger M M
Journal of Pain and Symptom Management
Mack J W
Marachelian A
Oncology 2020 List
Park J R
Pediatric
Prognosis
Rosenberg A R
Shusterman S
Twist C J
Uno H
-
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Title
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November 2020 List
Text
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November 2020 List
URL Address
<a href="http://doi.org/10.1186/s12904-020-00652-8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-020-00652-8</a>
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Title
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Differences in perspectives of pediatricians on advance care planning: a cross-sectional survey
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BMC palliative care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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advance care planning; palliative care; pediatrician; prognosis
Creator
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Song I G; Kang S H; Kim M S; Kim C H; Moon Y J; Lee J
Description
An account of the resource
BACKGROUND: The increase in the number of pediatric patients with complex health conditions necessitates the application of advance care planning for children. Earlier, withdrawal of life-sustaining treatment was taboo in the medical society in South Korea due to the history of such practice being punishable by law, and physicians tended to pursue aggressive treatment. With changes in public opinion on end-of-life care, the Korean government enacted a new law that protect human dignity by respecting patients' self-determination and facilitating advance care planning. However, little is known about current state of advance care planning for pediatric patients. The study aimed to assess perceptions regarding advance care planning among South Korean pediatricians and clarify any differences in perception among pediatric subspecialties. METHOD(S): This study was an observational cross-sectional survey that used a web-based self-report questionnaire. Participants comprised of pediatricians currently caring for children with life-limiting conditions in 2018. RESULT(S): Of the 96 respondents, 89 were included in the analysis. In a hypothetical patient scenario, more hemato-oncologists and intensivists than neonatologists and neurologists preferred to provide comfort care than aggressive treatment. While 72.2% of hemato-oncologists reported that they usually or always discuss advance care plans with parents during treatment, more than half of other pediatricians reported that they seldom do so. Furthermore, 65% of respondents said that they never discuss advance care planning with adolescent patients. Moreover, there were no notable differences among subspecialties. The most prevalent answers to factors impeding advance care planning were lack of systemic support after performing advance care planning (82.0%) and uncertain legal responsibilities (70.8%). CONCLUSION(S): The pediatricians differed in their experiences and attitudes toward advance care planning based on their subspecialty. Consequently, institutional support and education should be provided to physicians so that they can include children and families in discussions on prognosis.
Identifier
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<a href="http://doi.org/10.1186/s12904-020-00652-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00652-8</a>
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2020
Advance Care Planning
BMC Palliative Care
Kang S H
Kim C H
Kim M S
Lee J
Moon Y J
November 2020 List
Palliative Care
Pediatrician
Prognosis
Song I G
-
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Title
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May 2020 List
Text
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May 2020 List
URL Address
<a href="http://doi.org/10.1177/0269216319874689" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319874689</a>
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Title
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Medical and end-of-life decision making in adolescents' pre-heart transplant: A descriptive pilot study
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
adolescent; adult; Advance Care Planning; article; attention; child; clinical article; cross-sectional study; decision making; female; heart graft; human; male; patient participation; pilot study; prognosis; school child; young adult
Creator
An entity primarily responsible for making the resource
Cousino M K; Miller V A; Smith C; Uzark K; Lowery R; Rottach N; Blume E D; Schumacher K R
Description
An account of the resource
BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and end-of-life decision-making preferences. AIM: (1) To examine adolescent/young adult decision-making involvement specific to heart transplant listing, and (2) to characterize their preferences specific to medical and end-of-life decision making. DESIGN: This cross-sectional research study utilized survey methods. Data were collected from October 2016 to March 2018. SETTING/PARTICIPANTS: Twelve adolescent and young adult patients listed for heart transplant (ages = 12-19 years) and one parent for each were enrolled at a single-center, US children's hospital. RESULTS: Consistent with their preferences, the majority of adolescent/young adult participants (82%) perceived a high level of involvement in the decision to be listed for transplant. Patient involvement in this decision was primarily by way of seeking advice or information from their parents and being asked to express their opinion from parents. Despite a preference among patients to discuss their prognosis and be involved in end-of-life decision making if seriously ill, only 42% of patients had discussed their end-of-life wishes with anyone. Few parents recounted having such discussions. Preferences regarding the timing and nature of end-of-life decision-making discussions varied. CONCLUSIONS: Although young people are involved in the decision to pursue heart transplantation, little attention is paid to involving them in discussions regarding end-of-life decision making in a manner that is consistent with individual preferences.
Identifier
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<a href="http://doi.org/10.1177/0269216319874689" target="_blank" rel="noreferrer noopener">10.1177/0269216319874689</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
Adolescent
Adult
Advance Care Planning
Article
Attention
Blume E D
Child
Clinical Article
Cousino M K
Cross-sectional Study
Decision Making
Female
heart graft
Human
Lowery R
Male
May 2020 List
Miller V A
Palliative Medicine
Patient Participation
Pilot Study
Prognosis
Rottach N
School Child
Schumacher K R
Smith C
Uzark K
Young Adult
-
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://jim.bmj.com/content/68/1/91" target="_blank" rel="noreferrer noopener">https://jim.bmj.com/content/68/1/91</a>
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Title
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Family attitudes toward genomic sequencing in children with cardiac disease
Publisher
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Journal of Investigative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child; conference abstract; confidentiality; consumer; controlled study; Family Attitudes; family planning; genetic discrimination; grounded theory; health care system; heart center; Heart Diseases -- Mortality; human; human tissue; insurance; interrater reliability; perception; privacy; prognosis; resource allocation; semi structured interview; sequence analysis; surgery; transplantation; trust; uncertainty
Creator
An entity primarily responsible for making the resource
Gal D; Deuitch N; Tang R; Magnus D; Char D
Description
An account of the resource
Purpose of study Care for children with cardiac disease often involves difficult decisions and clinical uncertainty. Genomic Sequencing (GS) promises to improve clinical prognostics and could impact how difficult decisions are made. We sought to determine how GS results might alter family attitudes towards bedside care choices. Methods used We conducted semi-structured interviews of 35 families at a high-volume pediatric heart center. We discussed previous experience with and understanding of GS, perceptions toward GS in real and hypothetical scenarios, and support needed for implementing GS in clinical care. Responses were analyzed using grounded theory and a codebook was developed. Researchers discussed interpretation of codes and identified and described emerging themes. Interrater reliability was 0.91. Summary of results Three themes emerged: 1) Is knowledge beneficial? Families saw benefits in GS-the ability to provide specific and/or earlier diagnoses, clarify prognosis, change family planning, and avoid unnecessary/additional testing-but also struggled with the sense that GS results did not translate into meaningful changes in clinical care. 2) Should GS guide life limiting decisions and resource allocation? Some parents felt using GS to justify withdrawal of care or allocation of scarce resources (like organs for transplantation) could represent genetic discrimination; other parents felt GS should be used when allocating resources, even if it meant limitation of treatment options for their child. 3) Is giving GS results to the healthcare system safe? All families indicated mistrust of at least one facet of the medical system including insurance companies, maintenance of confidentiality, and the incentive structure in healthcare. Some also expressed distrust of direct to consumer GS testing. Conclusions In families of children with cardiac disease, trust is lacking in perceptions of the clinical utility of GS results, in using GS results to inform difficult decisions and in clinical protections for privacy or handling of GS results. Further efforts to improve the trustworthiness of clinical GS are needed to engage family support in implementation of GS to clinical care.
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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
Char D
Child
conference abstract
Confidentiality
consumer
Controlled Study
Deuitch N
Family Attitudes
family planning
Gal D
genetic discrimination
Grounded Theory
Health Care System
heart center
Heart Diseases -- Mortality
Human
Human Tissue
Insurance
interrater reliability
Journal Of Investigative Medicine
Magnus D
Perception
Privacy
Prognosis
Resource Allocation
Semi Structured Interview
sequence analysis
Surgery
Tang R
Transplantation
Trust
Uncertainty
-
Dublin Core
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Title
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March 2020 List
Text
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Citation List Month
March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.323" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.323</a>
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Title
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Parent-Reported Outcomes of Prognostic Communication in Hospitalized Children with Advanced Heart Disease (S762)
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
adult; cardiology; Caucasian; child; cohort analysis; conference abstract; controlled study; conversation; decision making; expectation; female; heart single ventricle; high school; hospitalization; hospitalized child; human; infant; intubation; length of stay; major clinical study; male; married person; medical record review; mother; prognosis; prospective study; pulmonary hypertension; pulmonary vein stenosis; recall; young adult
Creator
An entity primarily responsible for making the resource
Miller M K; Morell E; Feraco A; Goldberg S; Reichman J; Sahakian L; Sleeper L; Blume E
Description
An account of the resource
Objectives: * Describe a prospective study to evaluate how parents of children with advanced heart disease (AHD) perceive communication about prognosis with their child's physicians. * Describe results from this analysis that found no correlation between length of stay of a child with advanced heart disease and parent reports of conflicting information from physicians. Original Research Background and Objectives: Communication between parents and physicians is essential to high-quality care. For families of patients with AHD, understanding prognosis is critical to decision making and is associated with less perceived suffering at end of life. This is the first study to prospectively evaluate how parents of children with AHD perceive prognostic communication with their child's physicians.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.323" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.323</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
Adult
Blume E
Cardiology
Caucasian
Child
Cohort Analysis
conference abstract
Controlled Study
Conversation
Decision Making
Expectation
Female
Feraco A
Goldberg S
heart single ventricle
high school
Hospitalization
Hospitalized Child
Human
Infant
Intubation
Journal of Pain and Symptom Management
Length Of Stay
Major Clinical Study
Male
March 2020 List
married person
Medical Record Review
Miller M K
Morell E
Mother
Prognosis
Prospective Study
pulmonary hypertension
pulmonary vein stenosis
Recall
Reichman J
Sahakian L
Sleeper L
Young Adult
-
Dublin Core
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Title
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March 2020 List
Text
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Citation List Month
March 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/442">https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/442</a>
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Development of an innovative program to improve provision of palliative and hospice care to children and families in the community: The story of QoLA Kids
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
cancer patient; cancer prognosis; catchment; child; childhood cancer; conference abstract; controlled study; counselor; distress syndrome; female; Hospice Care; hospital personnel; human; magnet; major clinical study; male; nurse practitioner; outpatient; palliative therapy; patient referral; pediatric hospital; pediatric patient; prognosis; program impact; quality of life; registered nurse; social worker
Creator
An entity primarily responsible for making the resource
Kiefer A C; Kaye E C; Blazin L J; Baker J N
Description
An account of the resource
Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their families; however, hospice services only reach about 10% of eligible children who die in the United States, with the majority of pediatric patients receiving care through adult hospice organizations. Program Design: The Quality of Life for All (QoLA) Kids program, established in August 2012, is an outpatient, community-based pediatric palliative care and hospice program that strives to enhance quality of life for pediatric patients and families, provide care coordination across multiple settings, mitigate physical, psychosocial, and spiritual distress, ensure a comfortable and peaceful death in the patient's preferred setting, and support bereaved family members and hospital staff. The program represents a partnership between two MAGNET-certified pediatric hospitals and a local home health and hospice agency. QoLA Kids comprises an extensive interdisciplinary team including physicians, nurse practitioners, registered nurses, medical social workers, spiritual counselors, child life specialists, and administrative support staff. Patients are enrolled on either the palliative care or hospice arm of the program, with flexibility to transition easily between arms as clinical status and goals of care evolve. Eligibility for the hospice arm necessitates an expected prognosis of 6 months or less left to live. Program Impact: Since programmatic inception nearly 6 years ago, QoLA Kids has served a total of 330 children and families in the local catchment area. Approximately 41% of patients (n=135) were enrolled on the palliative arm, with the remaining 59% enrolled on hospice (n=195). Between 2012-2017, the mean number of days from enrollment to death was 142 days for patients on the hospice arm (n=76) and 288 for patients on the palliative care arm (n=5). The percentage of patients with malignancies who received palliative care prior to death increased from 71% to 97% within 2 years following program implementation. Conclusions/Future Directions: QoLA Kids is an innovative program that facilitates the provision of palliative care and hospice services and resources to children with serious illness and their families in the community. Through this program, children and families have been able to access palliative care services in their community well before the end of life. After program initiation, an increase in the number of palliative care consults was also seen within the pediatric oncology patient population suggesting that the program may provide an incentive for referral to palliative care. Further investigation is needed to identify optimal metrics for ascertaining the physical and psychosocial benefits from this innovative program.
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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).
2019
Baker J N
Blazin L J
Cancer Patient
Cancer Prognosis
catchment
Child
Childhood Cancer
conference abstract
Controlled Study
Counselor
Distress Syndrome
Female
Hospice Care
hospital personnel
Human
Kaye E C
Kiefer A C
magnet
Major Clinical Study
Male
March 2020 List
Nurse Practitioner
Outpatient
Palliative Therapy
Patient Referral
Pediatric Hospital
pediatric patient
Pediatrics
Prognosis
program impact
Quality Of Life
registered nurse
Social Worker
-
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Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
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URL Address
<a href="http://doi.org/10.1016/j.pediatrneurol.2017.01.019" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pediatrneurol.2017.01.019</a>
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Title
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Preliminary Study of Neurodevelopmental Outcomes and Parenting Stress in Pediatric Mitochondrial Disease
Publisher
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Pediatric 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
emotion; child behavior; priority journal; intellectual impairment/dm [Disease Management]; prognosis; preschool child; parental stress; human; article; child; female; male; quality of life; clinical article; daily life activity; disease severity; aggression; intelligence quotient; childhood disease/dm [Disease Management]; comorbidity; Leigh disease/dm [Disease Management]; MELAS syndrome/dm [Disease Management]; nervous system development; problem behavior/dm [Disease Management]; anxiety disorder/dm [Disease Management]; attention disturbance/dm [Disease Management]; brain atrophy/dm [Disease Management]; delinquency; depression/dm [Disease Management]; drug resistant epilepsy/dm [Disease Management]; drug resistant epilepsy/dr [Drug Resistance]; intelligence; lactic acidosis/dm [Disease Management]; muscle disease/dm [Disease Management]; neuroimaging; nuclear magnetic resonance imaging; postnatal depression/dm [Disease Management]; psychomotor development; sleep disorder/dm [Disease Management]; social problem; somatization/dm [Disease Management]; thinking impairment/dm [Disease Management]; behavioral problems; Leigh syndrome; mitochondrial disorders; MELAS syndrome; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Eom S; Lee Y M
Description
An account of the resource
Background Little is known regarding the neuropsychological profiles of pediatric patients with mitochondrial diseases or their parents, information that is crucial for improving the quality of life (QOL) for both patients and parents. We aimed to delineate neurodevelopment and psychological comorbidity in children with mitochondrial diseases in the preliminary investigation of adequate intervention methods, better prognoses, and improved QOL for both patients and parents. Methods Seventy children diagnosed with mitochondrial diseases were neuropsychologically evaluated. Neurocognitive (development, intelligence) and psychological (behavior, daily living function, maternal depression, parenting stress) functions were analyzed. Clinical variables, including the first symptom, epileptic classification, organ involvement, lactic acidosis, brain magnetic resonance imaging findings, muscle pathology, biochemical enzyme assay results, and syndromic diagnosis of mitochondrial diseases, were also reviewed. Results Prediagnostic assessments indicated that cognitive and psychomotor developments were significantly delayed. Group mean full scale intelligence quotient (IQ) scores indicated mild levels of intellectual disability, borderline levels of verbal IQ impairment, and mild levels of intellectual disability on performance IQ. Many children exhibited clinically significant levels of behavioral problems, whereas mothers of children with mitochondrial diseases exhibited significant increases in parenting stress relative to mothers of healthy children. Furthermore, 65% of mothers exhibited significant levels of depression. Early onset of the first symptoms, diffuse brain atrophy, and drug-resistant epilepsy negatively influenced neurodevelopmental and adaptive functions. Conclusion Better understanding of the functional levels and profiles of neurodevelopment and psychological comorbidity in children with mitochondrial diseases in the prediagnostic period is essential for adequate support and QOL of children with mitochondrial diseases and their parents.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pediatrneurol.2017.01.019" target="_blank" rel="noreferrer noopener">10.1016/j.pediatrneurol.2017.01.019</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).
2017
Aggression
anxiety disorder/dm [Disease Management]
Article
attention disturbance/dm [Disease Management]
behavioral problems
brain atrophy/dm [Disease Management]
characteristics
Child
Child Behavior
childhood disease/dm [Disease Management]
Clinical Article
Comorbidity
daily life activity
delinquency
depression/dm [Disease Management]
Disease Severity
drug resistant epilepsy/dm [Disease Management]
drug resistant epilepsy/dr [Drug Resistance]
Emotion
Eom S
Female
Human
intellectual impairment/dm [Disease Management]
Intelligence
Intelligence Quotient
lactic acidosis/dm [Disease Management]
Lee Y M
Leigh disease/dm [Disease Management]
Leigh syndrome
Male
MELAS syndrome
MELAS syndrome/dm [Disease Management]
mitochondrial disorders
muscle disease/dm [Disease Management]
nervous system development
neuroimaging
nuclear magnetic resonance imaging
Parental Stress
Pediatric Neurology
postnatal depression/dm [Disease Management]
Preschool Child
Priority Journal
problem behavior/dm [Disease Management]
Prognosis
psychomotor development
Quality Of Life
sleep disorder/dm [Disease Management]
social problem
somatization/dm [Disease Management]
thinking impairment/dm [Disease Management]
Trajectory
-
Dublin Core
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Title
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December 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
December 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0584" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0584</a>
Dublin Core
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Title
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Perceptions of Pediatric Palliative Care among Physicians Who Care for Pediatric Patients in South Korea
Publisher
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Journal of palliative medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; care behavior; caregiver; child; controlled study; decision making; education; human; multicenter study; oncologist; palliative therapy; pediatric patient; perception; prognosis; quality of life; questionnaire; South Korea; terminal care; tertiary care center; workforce
Creator
An entity primarily responsible for making the resource
Yu J; Song IG; Kim CH; Moon YJ; Shin HY; Kim MS
Description
An account of the resource
Background: Despite advances in medical technology, resources for pediatric palliative care (PPC) for children with serious illnesses are limited in South Korea. Physicians' awareness of and willingness to provide general palliative care and refer to specialized palliative care are key elements for providing PPC. Objective: The aim of this study was to explore physicians' perceptions of PPC and the differences therein between nononcologists and oncologists. Design: A nationwide survey was conducted among physicians caring for children in 45 tertiary hospitals in South Korea. Measurements: A questionnaire was developed to identify the confidence in and need for PPC, appropriate timing for PPC referrals, and perceived barriers to PPC. Results: Overall, 141 physicians responded (response rate: 10.4%). Physicians' confidence in PPC was low, although most reported a high need for PPC. Lack of workforce and facilities specialized in PPC (60.2%) and patients' or caregivers' negative recognition (55.9%) were reported as the main barriers to PPC implementation. Specialized PPC services in children's hospitals were preferred as the model of care (84.2%). Compared with nononcologists, oncologists showed higher confidence levels in decision making and communication with patients and families with poor prognosis (p = 0.041) and education and providing end-of-life care (p < 0.001). Furthermore, oncologists preferred earlier referrals than did nononcologists. Conclusions: To promote PPC provision and improve the quality of life of pediatric patients and their families, it is important to introduce PPC early into disease-modifying treatment at any level of health care. Developing education and training curricula regarding PPC for health care providers caring for children with severe illnesses is crucial.
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<a href="http://doi.org/10.1089/jpm.2018.0584" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0584</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).
2019
Article
care behavior
Caregiver
Child
Controlled Study
December 2019 List
Decision Making
Education
Human
Journal of Palliative Medicine
Kim CH
Kim MS
Moon YJ
Multicenter Study
Oncologist
Palliative Therapy
pediatric patient
Perception
Prognosis
Quality Of Life
Questionnaire
Shin HY
Song IG
South Korea
Terminal Care
tertiary care center
workforce
Yu J
-
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December 2019 List
Text
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December 2019 List
URL Address
<a href="http://doi.org/10.1097/01.ccm.0000551170.37983.db" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.ccm.0000551170.37983.db</a>
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Palliative care integration in pediatric cardiac intensive care units: A novel champion-based model
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Critical Care Medicine
Date
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2019
Subject
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child; comorbidity; conceptual framework; conceptual model; conference abstract; consensus; coronary care unit; feasibility study; heart development; heart disease; hospitalization; human; morbidity; outcome assessment; palliative therapy; prognosis; rotation; simulation; total quality management
Creator
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Moynihan K; Kaye E; Bailey V; Wolfe J; Thiagarajan R; Snaman J
Description
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Learning Objectives: Integration of pediatric palliative care (PPC) into the management of children with serious illness and their families is widely endorsed by international organizations and experts in the field as standard of care. However, timely referral to, and integration of PPC into the traditionally cure-orientated Cardiac Intensive Care Unit (CICU) remains variable. Despite significant declines in mortality for children with cardiac disease, key challenges confront the pediatric CICU community with regards to prognostication and discussion of goals of care. In the context of significant comorbidities and technological dependence, lengthy hospitalizations and recurrent admissions as well as interventions risking significant morbidity, these patients and families would benefit from PPC involvement across the illness trajectory. Methods: We propose a novel, conceptual framework for palliative care integration into the CICU using expert consensus and literature review. Results: The model utilizes CICU-based, interdisciplinary "champions". Pediatric Palliative Care Champions (PPCCs) would be identified from within the CICU team and receive additional training through PPC courses and rotations with sub-specialty PPC services. PPCCs would perform 3 primary roles. First, their clinical role as a liaison aims to strengthen provision of primary palliative care in daily CICU practice and improve utilization of sub-specialty PPC by encouraging earlier involvement in more complex patients' management. Second, PPCCs will lead educational and communication training of CICU staff including simulation sessions, focused on eliciting preferences, discussing prognosis, providing difficult news, assessing hopes and worries, and making goal-based recommendations. Third, PPCCs will be integral in CICU operational aspects and quality improvement initiatives including the development of CICU protocols and standard operating procedures to enhance the provision of high quality care at the end of life. Conclusions: This novel conceptual model for integration of PPC into CICUs is designed for adaptability in the context of cultural, financial, personnel, and logistic needs and constraints unique to each institution. While the PPCC framework offers several unique advantages over other care models, barriers to implementation are anticipated. Further research is needed to investigate the feasibility, acceptability, and potential efficacy of this model on standard outcome measures as well as patient- and parent-reported metrics.
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<a href="http://doi.org/10.1097/01.ccm.0000551170.37983.db" target="_blank" rel="noreferrer noopener">10.1097/01.ccm.0000551170.37983.db</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).
2019
Bailey V
Child
Comorbidity
Conceptual Framework
conceptual model
conference abstract
Consensus
coronary care unit
Critical Care Medicine
December 2019 List
Feasibility Study
heart development
heart disease
Hospitalization
Human
Kaye E
Morbidity
Moynihan K
outcome assessment
Palliative Therapy
Prognosis
Rotation
Simulation
Snaman J
Thiagarajan R
Total Quality Management
Wolfe J
-
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November 2019 List
Text
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November 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2019-001881" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2019-001881</a>
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Perinatal hypoxic-ischaemic encephalopathy: a national survey of end-of-life decisions and palliative care
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BMJ supportive & palliative care.
Date
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2019
Subject
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decision making; hypothermia; hypoxic ischemic encephalopathy; palliative therapy; article; consensus; controlled study; gestational age; grief; human; interview; nervous system; newborn; nurse; prognosis
Creator
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Arnaez J; Herranz-Rubia N; Garcia-Alix A
Description
An account of the resource
Objective To explore end-of-life (EoL) decision-making and palliative care in hypoxic-ischaemic encephalopathy (HIE) nationwide. Methods A cross-sectional national study on moderate-to-severe HIE in newborns ≥35 weeks’ gestational age in 2015, including all 57 level III units that offered hypothermia. Forty-one questions were included to explore how the prognosis is established, as well as timing of the decision-making process, and also how ongoing palliative care is offered. Results The main difficulties in EoL decisions lie in the scarce time to make an early, accurate prognosis. Only 20% shared the neurological prognosis with the parents within 72 hours of life, and in only a third of the centres is the nurse present when the prognostic information is given to the family. Almost 50% do not use protocols to order the EoL process. Practically, all centres (91%) reported taking into account the wishes of the parents. However, in 30% the team does not always reach consensus on how the withdrawal process. Specialised psychological support is available in 54% of the hospitals; in more than 50%, interviews are not arranged to examine the grieving process with parents. Conclusions There are four areas for improvement in the comprehensive, multidisciplinary approach to the EoL decision in the patient with HIE: (1) the need for EoL and interdisciplinary palliative care protocols, (2) participation of nurses in the process and improvement in the nurse–physician communication, (3) psychological support for parents involved in the EoL decisions and (4) implementation of strategies to give support during the grieving process.
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<a href="http://doi.org/10.1136/bmjspcare-2019-001881" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001881</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).
2019
Arnaez J
Article
BMJ supportive & palliative care.
Consensus
Controlled Study
Decision Making
Garcia-Alix A
Gestational Age
Grief
Herranz-Rubia N
Human
hypothermia
hypoxic ischemic encephalopathy
Interview
Nervous System
Newborn
November 2019 List
Nurse
Palliative Therapy
Prognosis
-
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Title
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June 2019 List
Text
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Citation List Month
June 2019 List
URL Address
<a href="https://www.ahajournals.org/doi/10.1161/circ.138.suppl_1.10512" target="_blank" rel="noreferrer noopener">https://www.ahajournals.org/doi/10.1161/circ.138.suppl_1.10512</a>
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Title
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When a child becomes terminal: Discrepant adolescent and parent perspectives on discussing a terminal prognosis with adolescents with cardiomyopathy, heart failure, and heart transplant
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Circulation. Conference
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
advance care planning; adolescent; death; outpatient; prognosis; school child; cancer prognosis; malignant neoplasm; heart failure; conference abstract; human; child; controlled study; perception; conversation; cardiomyopathy; heart graft
Creator
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Hansen K; Edwards L A; Luong R; Yohannes K; Halpern-Felsher B; Cohen H; Kaufman B
Description
An account of the resource
Introduction: Adolescents with cardiomyopathy, heart failure, and heart transplant (CMHF/HTx) are at risk of life-changing complications and premature death. The importance of advance care planning (ACP) in pediatric patients with HIV and cancer has been demonstrated, but the ACP preferences of adolescents with heart disease and their parents have not been evaluated. We aimed to describe and compare ACP preferences of adolescents with CMHF/HTx and their parents. Method(s): Outpatient adolescents with CMHF/HTx, aged 12-18y, and their parents completed a self-administered survey from March to May 2018. The survey evaluated preferences regarding the importance of ACP, sharing of prognostic information, and timing of ACP discussions. Participants answered independently. In addition, parents were asked their perception of their child's response. Adolescents' and parents' survey responses were compared. Survey responses were recoded as dichotomous variables and compared using McNemar's test. Result(s): Twenty-five dyads (mean adolescent age 15.0 +/- 1.8 years) completed the survey. Most adolescents (71%) considered their current health to be very good or excellent. ACP importance was ranked moderately or extremely important by 44% adolescents compared to 88% parents (p=0.006). Most adolescents (88%) reported that they wanted their doctor to inform them as soon as their doctor knew they were dying; in contrast, only 44% of parents wanted the doctor to share this information with their child (p=0.003). The majority of parents (84%) and adolescents (80%) wanted the adolescent to be involved in end-of-life (EOL) decisions. Conclusion(s): While many adolescents with CMHF/HTx did not report that ACP was of great importance, they do not want to be kept in the dark if death is near. Adolescents with CMHF/HTx reported that they want to be told as soon as the physician knows they are going to die and want to be involved in EOL decisions. Parents want their adolescent to be involved in EOL decisions, but are less likely to want to share a terminal prognosis with the adolescent. These results highlight discrepancies between adolescent and parent views regarding EOL conversations. More research is needed to inform effective EOL communication between parent, adolescent, and provider.
2018
Adolescent
Advance Care Planning
Cancer Prognosis
Cardiomyopathy
Child
Circulation. Conference
Cohen H
conference abstract
Controlled Study
Conversation
Death
Edwards L A
Halpern-Felsher B
Hansen K
Heart Failure
heart graft
Human
June 2019 List
Kaufman B
Luong R
Malignant Neoplasm
Outpatient
Perception
Prognosis
School Child
Yohannes K
-
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Title
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2018 Oncology List
Text
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Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1542/peds.2017-2241" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1542/peds.2017-2241</a>
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Title
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How Parents of Children With Cancer Learn About Their Children's Prognosis
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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Prognosis; Child; Hospitals Pediatric; Only Child
Creator
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Sisk BA; Kang TI; Mack JW
Description
An account of the resource
OBJECTIVES: To determine which prognostic information sources parents find informative and which are associated with better parental understanding of prognosis. METHODS: Prospective, questionnaire-based cohort study of parents and physicians of children with cancer at 2 academic pediatric hospitals. We asked parents how they learned about prognoses and evaluated relationships between information sources and prognostic understanding, defined as accuracy versus optimism. We excluded parents with pessimistic estimates and whose children had such good prognoses that optimism relative to the physician was impossible. Analytic cohort of 256 parent-physician pairs. RESULTS: Most parents considered explicit sources (conversations with oncologists at diagnosis, day-to-day conversations with oncologists, and conversations with nurses) "very" or "extremely" informative (73%-85%). Implicit sources (parent's sense of how child was doing or how oncologist seemed to feel child was doing) were similarly informative (84%-87%). Twenty-seven percent (70/253) of parents reported prognostic estimates matching physicians' estimates. Parents who valued implicit information had lower prognostic accuracy (odds ratio [OR] 0.50; 95% confidence interval 0.29-0.88), especially those who relied on a "general sense of how my child's oncologist seems to feel my child is doing" (OR 0.47; 0.22-0.99). Parents were more likely to use implicit sources if they reported receiving high-quality prognostic information (OR 3.02; 1.41-6.43), trusted the physician (OR 2.01; 1.01-3.98), and reported high-quality physician communication (OR 1.81; 1.00-3.27). CONCLUSIONS: Reliance on implicit sources was associated with overly-optimistic prognostic estimates. Parents who endorsed strong, trusting relationships with physicians were not protected against misinformation.
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<a href="http://doi.org/%2010.1542/peds.2017-2241" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-2241</a>
2017
Child
Hospitals Pediatric
Kang TI
Mack JW
Oncology 2018 List
Only Child
Pediatrics
Prognosis
Sisk BA
-
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Title
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2018 Oncology List
Text
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Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1080/0284186X.2016.1275780" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1080/0284186X.2016.1275780</a>
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Sick leave among parents of children with cancer - a national cohort study
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Acta Oncologica
Date
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2017
Subject
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Male; Infant Newborn; Follow-Up Studies; Prognosis; Parents/psychology; Child; Humans; Adult; Adolescent; Cohort Studies; Female; Child Preschool; Infant; Sweden/epidemiology; Only Child; Neoplasms/diagnosis/epidemiology/psychology; Registries; Sick Leave; Sick Leave/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Hjelmstedt S; Lindahl NA; Montgomery S; Hed MI; Hoven E
Description
An account of the resource
BACKGROUND: Due to psychological distress and an increased care burden, parents of children diagnosed with cancer may face a higher risk of sickness absence from work. The objective of this study was to examine the association of childhood cancer with parents' sick leave. MATERIAL AND METHODS: The sample comprised 3626 parents of 1899 children diagnosed with cancer in Sweden during 2004-2009, and a matched control group of parents (n = 34 874). Sick leave was measured as number of days with sickness benefit, retrieved from national registries. Logistic and negative binomial regression models were used to compare outcomes with parents from the control cohort. RESULTS: The risk of sick leave was statistically significantly higher up to six years following a child's cancer diagnosis. The increase in number of days with sickness benefit was most pronounced the year after diagnosis. Although mothers' sick leave prevalence was higher, the increase in risk relative to control parents was similar for mothers and fathers. Bereavement was associated with a heightened risk of sick leave, especially on the year of the child's death. CONCLUSIONS: Findings confirm that mothers and fathers of children diagnosed with cancer are at higher risk of sickness absence from work, with particularly pronounced risk among bereaved parents. Acquisition of further knowledge is warranted regarding possibilities and constraints of parents trying to combine their work life with caring for both their child and themselves.
Identifier
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<a href="http://doi.org/%2010.1080/0284186X.2016.1275780" target="_blank" rel="noreferrer noopener">10.1080/0284186X.2016.1275780</a>
2017
Acta Oncologica
Adolescent
Adult
Child
Child Preschool
Cohort Studies
Female
Follow-up Studies
Hed MI
Hjelmstedt S
Hoven E
Humans
Infant
Infant Newborn
Lindahl NA
Male
Montgomery S
Neoplasms/diagnosis/epidemiology/psychology
Oncology 2018 List
Only Child
Parents/psychology
Prognosis
Registries
Sick Leave
Sick Leave/statistics & numerical data
Sweden/epidemiology
-
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Title
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2018 Oncology List
Text
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Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/https://oncologypro.esmo.org/Meeting-Resources/ESMO-2017-Congress/Aggressiveness-of-care-at-the-end-of-life-in-children-with-cancer-a-nationwide-cohort-study" target="_blank" rel="noreferrer noopener">http://doi.o
rg/https://oncologypro.esmo.org/Meeting-Resources/ESMO-2017-Congress/Aggressiveness-of-care-at-the-end-of-life-in-children-with-cancer-a-nationwide-cohort-study</a>
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Title
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Perceptions of barriers and facilitators to early integration of pediatric palliative care: A national survey of pediatric oncology providers
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Child; Palliative Care; perception; palliative therapy; childhood cancer; prognosis; Only Child; outcome assessment; cancer prognosis; human; article; child; controlled study; patient care; patient education; software; nurse practitioner; oncologist; social work
Creator
An entity primarily responsible for making the resource
Dalberg T; McNinch NL; Friebert S
Description
An account of the resource
Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the care of children with cancer. Methods: A 36-question survey based on preliminary, single-institution data was electronically distributed to pediatric oncology physicians, nurse practitioners, nurses, and social workers nationally. The principal outcomes measured included perceived barriers and facilitators to early integration of pediatric palliative care. Data were analyzed using Rv3.1.2 statistical software. Results: Most respondents agreed that the PCT does not negatively impact the role of the oncologist; however, there were concerns that optimal patient care may be limited by pediatric oncologists' need to control all aspects of patient care (P < 0.001). Furthermore, oncologists, more than any provider group, identified that the emotional relationship they form with the patients and families they care for, influences what treatment options are offered and how these options are conveyed (P < 0.01). Education and evidence-based research remain important to all providers. Respondents reached consensus that early integration of a PCT would provide more potential benefits than risks and most would not limit access to palliative care based on prognosis. Conclusions: Overall, providers endorse early integration of the PCT for children with cancer. There remains a continued emphasis on provider and patient education. Palliative care is generally accepted as providing a benefit to children with cancer, though barriers persist and vary among provider groups.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
2018
Article
Cancer Prognosis
Child
Childhood Cancer
Controlled Study
Dalberg T
Friebert S
Human
McNinch NL
Nurse Practitioner
Oncologist
Oncology 2018 List
Only Child
outcome assessment
Palliative Care
Palliative Therapy
Patient Care
Patient Education
Pediatric Blood and Cancer
Perception
Prognosis
Social Work
Software
-
Dublin Core
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Title
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2018 Developing World List
Text
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Citation List Month
Developing World 2018 List
URL Address
<a href="http://doi.org/10.1080/10428194.2016.1219904" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1080/10428194.2016.1219904</a>
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Title
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Early mortality in children with acute lymphoblastic leukemia in a developing country: the role of malnutrition at diagnosis. A multicenter cohort MIGICCL study
Publisher
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Leukemia & Lymphoma
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Age Factors; Male; Infant Newborn; Comorbidity; Proportional Hazards Models; children; Child; Humans; Adolescent; Prevalence; Socioeconomic Factors; Female; Child Preschool; Infant; mortality; Developing Countries; Population Surveillance; Remission Induction; prognosis; Leukemia; Body Weights and Measures; malnutrition; Malnutrition/diagnosis/epidemiology; Mexico/epidemiology; Precursor Cell Lymphoblastic Leukemia-Lymphoma/epidemiology/ mortality/therapy
Creator
An entity primarily responsible for making the resource
Martin-Trejo JA; Nunez-Enriquez JC; Fajardo-Gutierrez A; Medina-Sanson A; Flores-Lujano J; Jimenez-Hernandez E; Amador-Sanchez R; Penaloza-Gonzalez JG; Alvarez-Rodriguez FJ; Bolea-Murga V; Espinosa-Elizondo RM; de Diego Flores-Chapa J; Perez-Saldivar ML; Rodriguez-Zepeda MD; Dorantes-Acosta EM; Nunez-Villegas NN; Velazquez-Avina MM; Torres-Nava JR; Reyes-Zepeda NC; Gonzalez-Bonilla CR; Flores-Villegas LV; Rangel-Lopez A; Rivera-Luna R; Paredes-Aguilera R; Cardenas-Cardos R; Martinez-Avalos A; Gil-Hernandez AE; Duarte-Rodriguez DA; Mejia-Arangure JM
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/10428194.2016.1219904" target="_blank" rel="noreferrer noopener">10.1080/10428194.2016.1219904</a>
2017
Adolescent
Age Factors
Alvarez-Rodriguez FJ
Amador-Sanchez R
Body Weights and Measures
Bolea-Murga V
Cardenas-Cardos R
Child
Child Preschool
Children
Comorbidity
de Diego Flores-Chapa J
Developing Countries
Developing World 2018 List
Dorantes-Acosta EM
Duarte-Rodriguez DA
Espinosa-Elizondo RM
Fajardo-Gutierrez A
Female
Flores-Lujano J
Flores-Villegas LV
Gil-Hernandez AE
Gonzalez-Bonilla CR
Humans
Infant
Infant Newborn
Jimenez-Hernandez E
Leukemia
Leukemia & Lymphoma
Male
malnutrition
Malnutrition/diagnosis/epidemiology
Martin-Trejo JA
Martinez-Avalos A
Medina-Sanson A
Mejia-Arangure JM
Mexico/epidemiology
Mortality
Nunez-Enriquez JC
Nunez-Villegas NN
Paredes-Aguilera R
Penaloza-Gonzalez JG
Perez-Saldivar ML
Population Surveillance
Precursor Cell Lymphoblastic Leukemia-Lymphoma/epidemiology/ mortality/therapy
Prevalence
Prognosis
Proportional Hazards Models
Rangel-Lopez A
Remission Induction
Reyes-Zepeda NC
Rivera-Luna R
Rodriguez-Zepeda MD
Socioeconomic Factors
Torres-Nava JR
Velazquez-Avina MM
-
Dublin Core
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Title
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2018 Developing World List
Text
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Citation List Month
Developing World 2018 List
URL Address
<a href="http://doi.org/10.22034/APJCP.2018.19.5.1303" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.22034/APJCP.2018.19.5.1303</a>
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Title
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Pediatric Palliative Care in Iran: Applying Regionalization of Health Care Systems
Publisher
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Asian Pacific Journal of Cancer Prevention
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Palliative Care/og [Organization & Administration]; Neoplasms/th [Therapy]; Follow-Up Studies; Prognosis; Child; Humans; Qualitative Research; Quality of Health Care; Cancer Care Facilities/og [Organization & Administration]; Cancer Care Facilities/ut [Utilization]; Delivery of Health Care/og [Organization & Administration]; Health Services Accessibility/og [Organization & Administration]
Creator
An entity primarily responsible for making the resource
Khanali ML; Rassouli M; Eshghi P; Zendedel K; Akbari Sari A; Heravi Karimooi M; Tahmasebi M; Shirin Abadi Farahani A
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.22034/APJCP.2018.19.5.1303" target="_blank" rel="noreferrer noopener">10.22034/APJCP.2018.19.5.1303</a>
2018
Akbari Sari A
Asian Pacific Journal Of Cancer Prevention
Cancer Care Facilities/og [Organization & Administration]
Cancer Care Facilities/ut [Utilization]
Child
Delivery of Health Care/og [Organization & Administration]
Developing World 2018 List
Eshghi P
Follow-up Studies
Health Services Accessibility/og [Organization & Administration]
Heravi Karimooi M
Humans
Khanali ML
Neoplasms/th [therapy]
Palliative Care/og [Organization & Administration]
Prognosis
Qualitative Research
Quality Of Health Care
Rassouli M
Shirin Abadi Farahani A
Tahmasebi M
Zendedel K
-
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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December 2018 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
December 2018 List
URL Address
<a href="http://doi.org/10.1002/ppul.24152" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1002/ppul.24152</a>
Dublin Core
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Title
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Primary palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members
Publisher
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Pediatric Pulmonology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
advance care planning; hospice; clinical assessment; pain assessment; education; palliative therapy; major clinical study; lung; prognosis; caregiver; skill; conference abstract; human; child; female; male; controlled study; adult; perception; awareness; depression assessment; Kruskal Wallis test
Creator
An entity primarily responsible for making the resource
Dellon EP; Basile M; Hobler M R; Georgiopoulos A; Goggin JL; Chen E; Goss CH; Hempstead SE; Faro A; Kavalieratos D
Description
An account of the resource
Background: "Primary" palliative care (PC) skills for CF care teams are not clearly defined, but in general for serious illness include managing basic physical and emotional symptoms, and having basic discussions about prognosis, goals, suffering, and code status. Complex symptom management and addressing conflicts around goals and decisions are considered "specialty" PC skills for which PC consultation may be appropriate. We aimed to understand primary PC skills of CF care teams from the perspectives of team members, individuals with CF, and family caregivers. Methods: CF care team members ("providers"), adults with CF ("patients"), and family caregivers ("caregivers") rated the ability of CF care teams to provide various aspects of PC using a 5-point scale from "poor" to "excellent." Median ratings were compared between and among groups using Mann-Whitney and Kruskal-Wallis tests. Results: A total of 520 participants, including 70 patients, 100 caregivers, and 350 providers, completed surveys. CF care teams consistently rated their PC skills higher than patients or caregivers rated providers' skills. Providers rated their teams "very good" at pain and depression assessments, discussing lung transplant, and discussing prognosis, and "good" at discussing advance care planning (ACP), code status, end of life, and hospice. Patients and caregivers agreed that teams provide "very good" pain assessment, but rated teams "good" at assessing depression (P<0.001) and discussing prognosis (P=0.006), and "poor" at discussing lung transplant (P<0.001), ACP (P<0.001), code status (P<0.001), end of life (P<0.001), and hospice (P<0.001). Providers, patients, and caregivers affiliated with adult CF care teams rated teams more highly then providers, patients, and caregivers affiliated with pediatric teams at discussing lung transplant (P<0.001), end of life (P=0.006), ACP (P<0.001), code status (P=0.012), and hospice (P=0.016). A majority of patients (69%) and caregivers (60%) felt CF care teams should definitely receive more PC training. Conclusions: Discrepancies exist among patient/caregiver and provider perceptions of PC skills in CF, and skills of adult and pediatric teams may differ. While patients, caregivers, and providers agree that CF care teams are skilled in some "primary" PC skills like pain and depression assessment and discussing prognosis, patients and caregivers feel providers' skills are lacking in discussing lung transplant, ACP, code status, end of life, and hospice. Education for all groups could promote awareness of PC, and CF care teams may benefit from specific PC training to enhance "primary" PC skills as well as understanding when and how to utilize specialty PC services.
Identifier
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<a href="http://doi.org/10.1002/ppul.24152" target="_blank" rel="noreferrer noopener">10.1002/ppul.24152</a>
2018
Adult
Advance Care Planning
Awareness
Basile M
Caregiver
Chen E
Child
clinical assessment
conference abstract
Controlled Study
December 2018 List
Dellon EP
depression assessment
Education
Faro A
Female
Georgiopoulos A
Goggin JL
Goss CH
Hempstead SE
Hobler M R
Hospice
Human
Kavalieratos D
Kruskal Wallis test
lung
Major Clinical Study
Male
Pain Assessment
Palliative Therapy
Pediatric Pulmonology
Perception
Prognosis
Skill
-
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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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909117739852" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909117739852</a>
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Title
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Unexpected Survivors: Children With Life-Limiting Conditions of Uncertain Prognosis
Publisher
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American Journal of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Congenital Abnormalities/mo [Mortality];Critical Illness/mo [Mortality];Palliative Care/sn [Statistics & Numerical Data];Survivors/sn [Statistics & Numerical Data];Child;Cohort Studies;Female;Humans;Male;North Carolina;Preschool;Prognosis;Retrospective Studies;Survivorship
Creator
An entity primarily responsible for making the resource
Nageswaran S;Hurst A;Radulovic A
Description
An account of the resource
OBJECTIVE: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of children with life-limiting illnesses who survived longer than the expectations of health-care providers. STUDY DESIGN: This is a retrospective cohort study conducted in a tertiary-care children's hospital in North Carolina. "Unexpected survivors," defined as children who survived despite a prognosis of imminent death or significantly longer than prognosticated by health-care providers, were identified from among 349 children enrolled in a pediatric palliative care program between March 2008 and October 2012. Children's clinical courses were followed until September 2015 or their death. RESULTS: Eighteen (5%) children were identified as unexpected survivors; 17 (10 girls and 7 boys) were included. Congenital anomalies were the most common diagnoses. Neonatal intensive care unit was the most frequent setting of prognostication. Thirteen children used some form of medical technology at the time of prognostication. Eleven children received hospice services. Eight died during the observation period but survived significantly longer than expected (median survival time 1.5 years), and 9 survived beyond the observation period (median survival time 5.9 years). CONCLUSIONS: Unexpected survivors are a small group of children with life-limiting conditions. Clinicians should be aware of the possibility of prognostic inaccuracy, able to communicate prognostic uncertainty to parents, and engage supportive services when prognosticating poor survival. Prospective studies are needed to understand outcomes of children with life-limiting illnesses of uncertain prognosis.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909117739852" target="_blank" rel="noreferrer noopener">10.1177/1049909117739852</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).
2018
American Journal of Hospice & Palliative Medicine
Child
Cohort Studies
Congenital Abnormalities/mo [Mortality]
Critical Illness/mo [Mortality]
Female
Humans
Hurst A
Male
Nageswaran S
North Carolina
November 2018 List
Palliative Care/sn [Statistics & Numerical Data]
Preschool
Prognosis
Radulovic A
Retrospective Studies
Survivors/sn [Statistics & Numerical Data]
Survivorship
-
Dublin Core
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Title
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1136/bmjpo-2017-000102" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjpo-2017-000102</a>
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Title
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Advance care planning for adolescent patients with life-threatening neurological conditions: A survey of Japanese paediatric neurologists
Publisher
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BMJ Paediatrics Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Advance care planning;neurologic disease;neurologist;pediatrician;Adult;article;artificial ventilation;cross-sectional study;do not resuscitate order;Family;Female;health care survey;hematologist;Human;Japan;living will;Male;Middle Aged;priority journal;prognosis;terminal care
Creator
An entity primarily responsible for making the resource
Yotani N;Kizawa Y;Shintaku H
Description
An account of the resource
Objective To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists. Design Cross-sectional study. A self-reported questionnaire was administered to assess the practice of advance care planning, advance directives and barriers to advance care planning for adolescent patients with life-threatening conditions. All board-certified paediatric neurologists in Japan were surveyed and those who had experience in taking care of adolescent patients with decision-making capacity were analysed. We compared the results with those of paediatric haematologists reported previously. results In total, 186 paediatric neurologists were analysed. If the patient's prognosis was <3 months, only about 30% of paediatric neurologists reported having discussions with patients, such as 'do not attempt resuscitation' orders (28%) and ventilator use (32%), whereas more than 70% did discuss these topics with patients' families. About half of the paediatric neurologists did not discuss advance directives at the end of life with their patients, whereas over 75% did discuss advance directives with patients' families. Compared with paediatric haematologists, paediatric neurologists had more end-of-life discussions with patients, such as where treatment and care will take place, do not attempt resuscitation orders, and the use of a ventilator, if the patient's prognosis was >>1 year. conclusion About half or less of the paediatric neurologists discussed advance care planning and advance directives with their adolescent patients who had life-threatening conditions, even if the patient's prognosis was <3 months. They tended to discuss advance care planning and advance directives more with families than with patients themselves.
Identifier
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<a href="http://doi.org/10.1136/bmjpo-2017-000102" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2017-000102</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).
2017
Adult
Advance Care Planning
Article
Artificial Ventilation
BMJ Paediatrics Open
Cross-sectional Study
do not resuscitate order
Family
Female
Health Care Survey
hematologist
Human
Japan
Kizawa Y
living will
Male
Middle Aged
Neurologic Disease
neurologist
November 2018 List
Pediatrician
Priority Journal
Prognosis
Shintaku H
Terminal Care
Yotani N
-
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Title
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1186/s12904-018-0360-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-018-0360-y</a>
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Title
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Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: A qualitative study
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
decision making;intensive care;life sustaining treatment;neonatology;Palliative therapy;qualitative research;religion;treatment withdrawal;article;Child;father;genetic transcription;health care personnel;Human;human tissue;interview;major clinical study;Male;medical record;mother;narrative;prognosis;thematic analysis
Creator
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Superdock AK;Barfield RC;Brandon DH;Docherty SL
Description
An account of the resource
Background: Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are unknown. Health care providers (HCPs) often feel unprepared to discuss R&S with parents or address conflicts between R&S beliefs and clinical recommendations. Our study sought to illuminate the influence of R&S on parental decision-making and explore how HCPs interact with parents for whom R&S are important. Methods: A longitudinal, qualitative, descriptive design was used to (1) identify R&S factors affecting parental decision-making, (2) observe changes in R&S themes over time, and (3) learn about HCP perspectives on parental R&S. The study sample included 16 cases featuring children with complex life-threatening conditions. The length of study for each case varied, ranging in duration from 8 to 531 days (median = 380, mean = 324, SD = 174). Data from each case included medical records and sets of interviews conducted at least monthly with mothers (n = 16), fathers (n = 12), and HCPs (n = 108). Thematic analysis was performed on 363 narrative interviews to identify R&S themes and content related to decision-making. Results: Parents from 13 cases reported R&S directly influenced decision-making. Most HCPs were unaware of this influence. Fifteen R&S themes appeared in parent and HCP transcripts. Themes most often associated with decision-making were Hope & Faith, God is in Control, Miracles, and Prayer. Despite instability in the child's condition, these themes remained consistently relevant across the trajectory of illness. R&S influenced decisions about treatment initiation, procedures, and life-sustaining therapy, but the variance in effect of R&S on parents' choices ultimately depended upon other medical & non-medical factors. Conclusions: Parents consider R&S fundamental to decision-making, but apply R&S concepts in vague ways, suggesting R&S impact how decisions are made more than what decisions are made. Lack of clarity in parental expressions of R&S does not necessarily indicate insincerity or underestimation of the seriousness of the child's prognosis; R&S can be applied to decision-making in both functional and dysfunctional ways. We present three models of how religious and spiritual vagueness functions in parental decision-making and suggest clinical applications.
Identifier
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<a href="http://doi.org/10.1186/s12904-018-0360-y" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0360-y</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).
2018
Article
Barfield RC
BMC Palliative Care
Brandon DH
Child
Decision Making
Docherty SL
Father
genetic transcription
Health Care Personnel
Human
Human Tissue
Intensive Care
Interview
Life Sustaining Treatment
Major Clinical Study
Male
Medical Record
Mother
Narrative
Neonatology
November 2018 List
Palliative Therapy
Prognosis
Qualitative Research
Religion
Superdock AK
Thematic Analysis
Treatment Withdrawal
-
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
June 2018 List
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).
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 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909117739852" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909117739852</a>
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Title
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Unexpected survivors: Children with life-limiting conditions of uncertain prognosis
Publisher
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American Journal of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
children; Health & Mental Health Treatment & Prevention (3300); life-limiting medical conditions; Prognosis; prognostication; survival; Survivors; Uncertainty
Creator
An entity primarily responsible for making the resource
Nageswaran S; Hurst A; Radulovic A
Description
An account of the resource
Objective: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of children with life-limiting illnesses who survived longer than the expectations of health-care providers. Study Design: This is a retrospective cohort study conducted in a tertiary-care children’s hospital in North Carolina. 'Unexpected survivors,' defined as children who survived despite a prognosis of imminent death or significantly longer than prognosticated by health-care providers, were identified from among 349 children enrolled in a pediatric palliative care program between March 2008 and October 2012. Children’s clinical courses were followed until September 2015 or their death. Results: Eighteen (5%) children were identified as unexpected survivors; 17 (10 girls and 7 boys) were included. Congenital anomalies were the most common diagnoses. Neonatal intensive care unit was the most frequent setting of prognostication. Thirteen children used some form of medical technology at the time of prognostication. Eleven children received hospice services. Eight died during the observation period but survived significantly longer than expected (median survival time 1.5 years), and 9 survived beyond the observation period (median survival time 5.9 years). Conclusions: Unexpected survivors are a small group of children with life-limiting conditions. Clinicians should be aware of the possibility of prognostic inaccuracy, able to communicate prognostic uncertainty to parents, and engage supportive services when prognosticating poor survival. Prospective studies are needed to understand outcomes of children with life-limiting illnesses of uncertain prognosis. (PsycINFO Database Record (c) 2018 APA, all rights reserved)
Identifier
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<a href="http://doi.org/10.1177/1049909117739852" target="_blank" rel="noreferrer noopener">10.1177/1049909117739852</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).
2018
American Journal of Hospice & Palliative Medicine
Children
Health & Mental Health Treatment & Prevention (3300)
Hurst A
June 2018 List
life-limiting medical conditions
Nageswaran S
Prognosis
prognostication
Radulovic A
Survival
Survivors
Uncertainty
-
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Title
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April 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2017.12.050" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpeds.2017.12.050</a>
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Title
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Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor
Publisher
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Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
prognosis; Infant; Intensive Care Units; Medical Futility; Neonatal; Newborn; Parents; Prognosis; ethics; moral distress; prematurity; gray zone; Nicu; parent experiences; poor prognosis
Creator
An entity primarily responsible for making the resource
Arnolds M; Xu L; Hughes P; McCoy J; Meadow W
Description
An account of the resource
OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible neonates at 2 institutions underwent audiotaped, semistructured interviews while their infants were still in the hospital and then again 6 months to 1 year after discharge or death. Interviews were transcribed and data were analyzed using thematic analysis. Two authors independently reviewed and coded each interview and discrepancies were resolved by consensus. RESULTS: Twenty-six families were interviewed in the initial group and 17 families were interviewed in the follow-up group. The most common themes identified included realism about death (24 families), appreciation for the infant's care team (23 families), and optimism and hope (22 families). Overall themes were very similar across both centers, and among parents of infants who died and those who survived. Themes of regret, futility, distrust of care team, and infant pain were brought up infrequently or not at all. CONCLUSIONS: No family believed that the care being provided to their infant was futile; rather, parents were grateful for the care provided to their infant, regardless of outcome. Even in the case of a poor prognosis or the death of an infant, families in our study viewed their infant's stay in the neonatal intensive care unit favorably.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2017.12.050" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2017.12.050</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).
2018
April 2018 List
Arnolds M
Ethics
gray zone
Hughes P
Infant
Intensive Care Units
Journal of Pediatrics
McCoy J
Meadow W
Medical Futility
Moral Distress
Neonatal
Newborn
Nicu
Parent Experiences
Parents
poor prognosis
Prematurity
Prognosis
Xu L
-
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/10.1002/pbc.24712" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.24712</a>
Dublin Core
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Title
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Association between religious and socio-economic background of parents of children with solid tumors and DNR orders
Publisher
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Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Survival Rate; Young Adult; Neoplasms; decision making; Adult; Parents; Education; Prognosis; Follow-Up Studies; Socioeconomic Factors; Resuscitation Orders; Religion; Medical Records; Preschool
Creator
An entity primarily responsible for making the resource
Hileli I; Weyl Ben Arush M; Hakim F; Postovsky S
Description
An account of the resource
BACKGROUND: The influence of socio-economic and religious background on decisions made by parents of children with incurable cancer regarding DNR orders is not fully understood. PROCEDURE: A retrospective analysis of medical charts of patients who died between January 2000 and January 2011 was performed. The following data were sought: written evidence of DNR discussion with parents, religious background, educational level, monthly income. RESULTS: There was evidence of a discussion on DNR in 73/90 charts. DNR consent was obtained in 14/17 (82.4%) cases where at least one parent had >15 years of education versus in only 24/45 (53.3%) cases where both parents had ≤15 years education as determined by univariate analysis (P = 0.03). DNR consent was also more likely to be obtained among parents of children with income >10,000 NIS (24/30, 80.0% vs. 20/38, 52.6%, P = 0.013). Parents of Jewish (22/30, 73.3%), Islamic (16/26, 61.5%), and Christian (8/9, 88.9%) background were equally likely to provide DNR consent. However, Druze families were less likely to do so (2/8, 25.0%, P = 0.036). CONCLUSIONS: The process of decision-making to a DNR request was associated with parents' educational level and monthly family income, and not by religious background, with the exception of Druze families.
2014-02
Identifier
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<a href="http://doi.org/10.1002/pbc.24712" target="_blank" rel="noreferrer">10.1002/pbc.24712</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).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
Adult
Backlog
Child
Decision Making
Education
Female
Follow-up Studies
Hakim F
Hileli I
Humans
Infant
Journal Article
Male
Medical Records
Neoplasms
Parents
Pediatric Blood & Cancer
Postovsky S
Preschool
Prognosis
Religion
Resuscitation Orders
Retrospective Studies
Socioeconomic Factors
Survival Rate
Weyl Ben Arush M
Young Adult
-
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/10.1002/pbc.24864" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.24864</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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Use of a clinical pathway to improve the acute management of vaso-occlusive crisis pain in pediatric sickle cell disease
Publisher
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Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Child; Female; Humans; infant; Male; Young Adult; Pain; Pain Management; Adult; Analgesics; Prognosis; Follow-Up Studies; Prospective Studies; Critical Pathways; Anemia; Preschool; Arterial Occlusive Diseases; Sickle Cell; Tertiary Care Centers
Creator
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Ender KL; Krajewski JA; Babineau J; Tresgallo M; Schechter W; Saroyan JM; Kharbanda A
Description
An account of the resource
BACKGROUND: The most common, debilitating morbidity of sickle cell disease (SCD) is vaso-occlusive crisis (VOC) pain. Although guidelines exist for its management, they are generally not well-followed, and research in other pediatric diseases has shown that clinical pathways improve care. The purpose of our study was to determine whether a clinical pathway improves the acute management of sickle cell vaso-occlusive crisis (VOC) pain in the pediatric emergency department (PED). PROCEDURE: Pain management practices were prospectively investigated before and after the initiation of a clinical pathway in the PED of an urban, tertiary care center with 50,000 ED visits per year and approximately 200 active sickle cell patients. The pathway included instructions for triage, monitoring, medication administration, and timing of assessments and interventions. Data were eligible from 35 pre-pathway and 33 post-pathway visits. Primary outcome was time interval to administration of first analgesic medication. Statistical analysis was by Student's t-test, using natural-log-transformed data for outcomes with skewed distribution curves. RESULTS: Time interval to first analgesic improved from 74 to 42 minutes (P = 0.012) and to first opioid from 94 to 46 minutes (P = 0.013). The percentage of patients who received ketorolac increased from 57% to 82% (P = 0.03). Decrease in time interval to subsequent pain score assessment was not statistically significant (110 to 72 minutes (P = 0.07)), and change in pain score was not different (P = 0.25). CONCLUSIONS: The use of a clinical pathway for sickle cell VOC in the PED can improve important aspects of pain management and merits further investigation and implementation.
2014-04
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.24864" target="_blank" rel="noreferrer">10.1002/pbc.24864</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
2014
Adolescent
Adult
Analgesics
Anemia
Arterial Occlusive Diseases
Babineau J
Backlog
Child
Critical Pathways
Ender KL
Female
Follow-up Studies
Humans
Infant
Journal Article
Kharbanda A
Krajewski JA
Male
Pain
Pain Management
Pediatric Blood & Cancer
Preschool
Prognosis
Prospective Studies
Saroyan JM
Schechter W
Sickle Cell
Tertiary Care Centers
Tresgallo M
Young Adult
-
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/j.jpainsymman.2013.03.020" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2013.03.020</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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Predictive factors for do-not-resuscitate designation among terminally ill cancer patients receiving care from a palliative care consultation service.
Publisher
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Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Female; Humans; Male; Prognosis; Aged; Middle Aged; Sex Factors; Multivariate Analysis; Time Factors; retrospective studies; DNAR; Taiwan; Resuscitation Orders; Palliative Care; Neoplasms/th [Therapy]; referral and consultation; Terminally Ill; Family/px [Psychology]; Liver Neoplasms/di [Diagnosis]; Liver Neoplasms/pp [Physiopathology]; Liver Neoplasms/px [Psychology]; Liver Neoplasms/th [Therapy]; Neoplasms/di [Diagnosis]; Neoplasms/pp [Physiopathology]; Neoplasms/px [Psychology]; Resuscitation Orders/px [Psychology]; Terminally Ill/px [Psychology]
Creator
An entity primarily responsible for making the resource
Kao Chen-Yi; Wang Hung-Ming; Tang Shu-Chuan; Huang K-G; Jaing T-H; Liu Chien-Ying; Liu Keng-Hao; Shen W-C; Wu Jin-Hou; Hung Y-S; Hsu H-C; Chen JS; Liau Chi-Ting; Lin Yung-Chang; Su Po-Jung; Hsieh C-H; Chou WC
Description
An account of the resource
CONTEXT: Since the development of palliative care in the 1980s, "do not resuscitate" (DNR) has been promoted worldwide to avoid unnecessary resuscitation in terminally ill cancer patients., OBJECTIVES: This study aimed to evaluate the effect of a palliative care consultation service (PCCS) on DNR designation and to identify a subgroup of patients who would potentially benefit from care by the PCCS with respect to DNR designation., METHODS: In total, 2995 terminally ill cancer patients (with a predicted life expectancy of less than six months by clinician estimate) who received care by the PCCS between January 2006 and December 2010 at a single medical center in Taiwan were selected. Among these, the characteristics of 2020 (67.4%) patients who were not designated as DNR at the beginning of care by the PCCS were retrospectively analyzed to identify variables pertinent to DNR designation., RESULTS: A total of 1301 (64%) of 2020 patients were designated as DNR at the end of care by the PCCS. Male gender and primary liver cancer were characteristics more predominantly found among DNR-designated patients who also had worse performance status, higher prevalence of physical distress, and shorter intervals from palliative care referral to death than did patients without DNR designation. On univariate analysis, a higher probability of DNR designation was associated with male gender, duration of care by the PCCS of more than 14 days, patients' prognostic awareness, family's diagnostic and prognostic awareness, and high Palliative Prognostic Index (PPI) scores. On multivariate analysis, duration of care by the PCCS, patients' prognostic awareness, family's diagnostic and prognostic awareness, and a high PPI score constituted independent variables predicting DNR-designated patients at the end of care by the PCCS., CONCLUSION: DNR designation was late in terminally ill cancer patients. DNR-designated cancer patient indicators were high PPI scores, patients' prognostic awareness, family's diagnostic and prognostic awareness, and longer durations of care by the PCCS.Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
2014
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2013.03.020" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2013.03.020</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
2014
Aged
Backlog
Chen JS
Chou WC
DNAR
Family/px [psychology]
Female
Hsieh C-H
Hsu H-C
Huang K-G
Humans
Hung Y-S
Jaing T-H
Journal Article
Journal of Pain and Symptom Management
Kao Chen-Yi
Liau Chi-Ting
Lin Yung-Chang
Liu Chien-Ying
Liu Keng-Hao
Liver Neoplasms/di [Diagnosis]
Liver Neoplasms/pp [Physiopathology]
Liver Neoplasms/px [Psychology]
Liver Neoplasms/th [Therapy]
Male
Middle Aged
Multivariate Analysis
Neoplasms/di [Diagnosis]
Neoplasms/pp [Physiopathology]
Neoplasms/px [psychology]
Neoplasms/th [therapy]
Palliative Care
Prognosis
Referral And Consultation
Resuscitation Orders
Resuscitation Orders/px [Psychology]
Retrospective Studies
Sex Factors
Shen W-C
Su Po-Jung
Taiwan
Tang Shu-Chuan
Terminally Ill
Terminally Ill/px [Psychology]
Time Factors
Wang Hung-Ming
Wu Jin-Hou
-
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.2013.0663" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2013.0663</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
What's Missing in Missing Data? Omissions in Survey Responses among Parents of Children with Advanced Cancer
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
2014
Subject
The topic of the resource
adolescent; Female; Humans; Male; Neoplasms; Adult; Parents; Prognosis; Questionnaires; Disease Progression; Research; quality of life; Life Expectancy; prog; surveys
Creator
An entity primarily responsible for making the resource
Rosenberg AR; Dussel V; Orellana L; Kang TI; Geyer JR; Feudtner C; Wolfe J
Description
An account of the resource
Abstract Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. Objective: To describe patterns of missing data in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study, and highlight challenges in asking sensitive research questions. Design: Cross-sectional, survey-based study embedded within a randomized controlled trial. Setting: Three large children's hospitals: Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCCDC); Children's Hospital of Philadelphia (CHOP); and Seattle Children's Hospital (SCH). Measurements: At the time of their child's enrollment, parents completed the Survey about Caring for Children with Cancer (SCCC), including demographics, perceptions of prognosis, treatment goals, quality of life, and psychological distress. Results: Eighty-six of 104 parents completed surveys (83% response). The proportion of missing data varied by question type. While 14 parents (16%) left demographic fields blank, over half (n=48; 56%) declined to answer at least one question about their child's prognosis, especially life expectancy. The presence of missing data was unrelated to the child's diagnosis, time from progression, time to death, or parent distress (p>0.3 for each). Written explanations in survey margins suggested that addressing a child's life expectancy is particularly challenging for parents. Conclusions and Relevance: Parents of children with cancer commonly refrain from answering questions about their child's prognosis, however, they may be more likely to address general cure likelihood than explicit life expectancy. Understanding acceptability of sensitive questions in survey-based research will foster higher quality palliative care research.
2014-05
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2013.0663" target="_blank" rel="noreferrer">10.1089/jpm.2013.0663</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
2014
Adolescent
Adult
Backlog
Disease Progression
Dussel V
Female
Feudtner C
Geyer JR
Humans
Journal Article
Journal of Palliative Medicine
Kang TI
Life Expectancy
Male
Neoplasms
Orellana L
Parents
prog
Prognosis
Quality Of Life
Questionnaires
Research
Rosenberg AR
surveys
Wolfe J