1
40
147
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Dublin Core
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Title
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July 2021 List
Text
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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>
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Title
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Paediatric palliative screening scale as a useful tool for clinicians' assessment of palliative care needs of pediatric patients: a retrospective cohort study
Publisher
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BMC Palliative Care
Date
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2021
Subject
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Pediatrics; Prognosis; Palliative care; Pediatrician
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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
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<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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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
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Title
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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
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European Journal of Pediatrics
Date
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2021
Subject
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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
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Williams N; Radia T; Harman K; Agrawal P; Cook J; Gupta A
Description
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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
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<a href="http://doi.org/10.1007/s00431-020-03801-6" target="_blank" rel="noreferrer noopener">10.1007/s00431-020-03801-6</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).
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
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Title
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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>
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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
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Abuhammad S; Elayyan M; El-Bashir M
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).
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
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Title
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Oncology
Text
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Oncology 2017 List
URL Address
<a href="http://doi.org/10.1097/mph.0000000000000523" target="_blank" rel="noreferrer">http://doi.org/10.1097/mph.0000000000000523</a>
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The Outcome of Critically Ill Pediatric Cancer Patients Admitted to the Pediatric Intensive Care Unit in a Tertiary University Oncology Center in a Developing Country: A 5-Year Experience
Publisher
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Journal Of Pediatric Hematology/oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
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Developing Countries; Intensive Care Units; Academic Medical Centers; Adolescent; Cancer Care Facilities; Child; Critical Illness; Female; Hematologic Neoplasms/complications/ Mortality/therapy; Humans; Infant; Male; Multiple Organ Failure/etiology; Pediatric; Preschool; Prognosis; Respiratory Insufficiency/etiology; Retrospective Studies; Sepsis/etiology; Tertiary Care Centers; Treatment Outcome
Creator
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Ali AM; Sayed HA; Mohammed MM
Description
An account of the resource
INTRODUCTION: Cancer remains a major cause of death in children, but recent advances in supportive care and progress in the use of chemotherapy have considerably improved the prognosis. The need for intensive care management in pediatric oncology patients is increasing. However, studies demonstrating their outcome in the literature are still deficient, especially in developing countries. Here, we aim to report our experience in managing patients admitted to the pediatric intensive care unit (PICU) at South Egypt Cancer Institute, a tertiary university oncology center in a developing country. PATIENTS AND METHODS: A review of all cancer patients admitted to the PICU at South Egypt Cancer Institute between January 2007 and December 2011 and an evaluation of prognostic factors that may correlate to their short-term outcome were performed. RESULTS: A total of 550 pediatric oncology patients were admitted to the PICU on 757 occasions. Hematological malignancies represented 73.6% of the cases. The median duration of PICU stay was 5 days. Sepsis and respiratory failure were the most frequent indications for PICU admission. The overall survival at the time of discharge from the PICU was 60%. Several factors were found to significantly affect the outcome of patients admitted to the PICU, including the underlying disease, the reason for admission, the intervention used, and the number of failing organs at the time of admission to the PICU. CONCLUSIONS: The prognosis of patients admitted to the PICU in developing countries is still behind those in developed ones. Late referral, especially of patients presenting with respiratory failure, sepsis, and multiorgan failure usually, requires urgent intervention with inotropic support, oxygen therapy, and mechanical ventilation and is significantly associated with poor outcomes, especially in patients with hematological malignancies.
Identifier
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<a href="http://doi.org/10.1097/mph.0000000000000523" target="_blank" rel="noreferrer">10.1097/mph.0000000000000523</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).
2016
Academic Medical Centers
Adolescent
Ali AM
Cancer Care Facilities
Child
Critical Illness
Developing Countries
Female
Hematologic Neoplasms/complications/ Mortality/therapy
Humans
Infant
Intensive Care Units
Journal Of Pediatric Hematology/oncology
Male
Mohammed MM
Multiple Organ Failure/etiology
Oncology 2017 List
Pediatric
Preschool
Prognosis
Respiratory Insufficiency/etiology
Retrospective Studies
Sayed HA
Sepsis/etiology
Tertiary Care Centers
Treatment Outcome
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Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1007/978-1-4615-1449-7_11" target="_blank" rel="noreferrer">http://doi.org/10.1007/978-1-4615-1449-7_11</a>
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Title
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The syndrome of cardiac cachexia
Publisher
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International Journal Of Cardiology
Date
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2002
Subject
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Humans; Prognosis; Heart Failure; Non-U.S. Gov't; Research Support; Syndrome; Cachexia/diagnosis/etiology/therapy; Congestive/complications/diagnosis/therapy; Greece
Creator
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Anker SD; Sharma R
Description
An account of the resource
Cachexia, i.e. body wasting, has long been recognised as a serious complication of chronic illness. The occurrence of wasting in chronic heart failure (CHF) has been known for many centuries, but it has not been investigated extensively until recently. Cardiac cachexia is a common complication of CHF which is associated with poor prognosis, independently of functional disease severity, age, measures of exercise capacity, and left ventricular ejection fraction. Patients with cardiac cachexia suffer from generalised loss of lean tissue, fat tissue, as well as bone tissue. Cachectic CHF patients are weaker and fatigue earlier. This is due to both reduced skeletal muscle mass and impaired skeletal muscle quality. Concerning the pathophysiology of cardiac cachexia, there is increasing evidence that neurohormonal and immune abnormalities may play a crucial role. Cachectic CHF patients have raised plasma levels of norepinephrine, epinephrine, and cortisol, and they show high plasma renin activity and increased plasma aldosterone levels. A number of studies have also shown that cardiac cachexia is linked to raised plasma levels of inflammatory cytokines, such as tumor necrosis factor alpha. The available evidence suggests that cardiac cachexia is a multifactorial neuroendocrine and metabolic disorder with a poor prognosis. A complex imbalance of different body systems, termed catabolic/anabolic imbalance, is likely to be responsible for the development of the wasting process. It is hoped that a better understanding of the pathophysiological mechanisms involved in cardiac cachexia will lead to novel therapeutic strategies in the (near) future.
2002
Identifier
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<a href="http://doi.org/10.1007/978-1-4615-1449-7_11" target="_blank" rel="noreferrer">10.1007/978-1-4615-1449-7_11</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
2002
Anker SD
Backlog
Cachexia/diagnosis/etiology/therapy
Congestive/complications/diagnosis/therapy
Greece
Heart Failure
Humans
International Journal Of Cardiology
Journal Article
Non-U.S. Gov't
Prognosis
Research Support
Sharma R
Syndrome
-
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Title
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January 2018 List
Text
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Citation List Month
January 2018 List
URL Address
<a href="http://doi.org/10.7748/ncyp.28.7.51.s26" target="_blank" rel="noreferrer">http://doi.org/10.7748/ncyp.28.7.51.s26</a>
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Title
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Legal and ethical issues in neonatal nursing
Publisher
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Nursing Children And Young People
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
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gestational age; newborn nursing; Human; Male; Neonatal Intensive Care Unit; neonatal nurse; Newborn; prematurity; Prognosis
Creator
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Anonymous
Description
An account of the resource
Neonatal nurses regularly face complex legal and ethical dilemmas. This article discusses the hypothetical case of Jack, a two-day-old infant, born at 39 weeks' gestation, and diagnosed with trisomy 13 (syndrome), a life-limiting condition and being cared for in a neonatal intensive care unit. Jack's prognosis is poor and he is not expected to live past two weeks of age.
Identifier
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<a href="http://doi.org/10.7748/ncyp.28.7.51.s26" target="_blank" rel="noreferrer">10.7748/ncyp.28.7.51.s26</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).
2016
Anonymous
Gestational Age
Human
January 2018 List
Male
Neonatal Intensive Care Unit
Neonatal Nurse
Newborn
newborn nursing
Nursing Children and Young People
Prematurity
Prognosis
-
Dublin Core
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Title
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November 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
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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Title
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Perinatal hypoxic-ischaemic encephalopathy: a national survey of end-of-life decisions and palliative care
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
2019
Subject
The topic of the resource
decision making; hypothermia; hypoxic ischemic encephalopathy; palliative therapy; article; consensus; controlled study; gestational age; grief; human; interview; nervous system; newborn; nurse; prognosis
Creator
An entity primarily responsible for making the resource
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.
Identifier
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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
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 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>
Dublin Core
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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
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<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
May 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Understanding Death With Limited Experience In Life: Dying Children's And Adolescents' Understanding Of Their Own Terminal Illness And Death
Publisher
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Current Opinion In Supportive And Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Adolescent; Attitude To Death; Child; Communication; Fear; Humans; Palliative Care/organization & Administration; Palliative Care/psychology; Professional-family Relations; Prognosis; Terminal Care/organization & Administration; Terminal Care/psychology; Terminally Ill/legislation & Jurisprudence; Terminally Ill/psychology; Time Factors
Creator
An entity primarily responsible for making the resource
Bates Alan T; Kearney Julia A
Description
An account of the resource
PURPOSE OF REVIEW: An up-to-date summary of the literature on children's and adolescents' understanding of their own terminal illness and death. RECENT FINDINGS: Clinicians still find it difficult to speak with pediatric patients about death even though guidelines for facilitating communication on the topic exist. As a result, pediatric patients are less likely to develop a clear understanding of their illness and there is a disconnect between clinicians and parents about prognosis, even when clinicians have concluded there is no longer possibility for cure. Insufficient communication and poor understanding may increase the risk of patients feeling isolated, mistrustful and anxious, and deprive them of a role model who can communicate about painful issues or share difficult feelings. Despite these complexities, young people often show remarkable resiliency in the face of death and want to get the most out of the remaining time they have. SUMMARY: In addition to these most recent findings, this review examines the challenges in researching this topic, obstacles to patients receiving information about prognosis, and how physical symptoms affect patients' ability to develop an understanding. It also reviews sources of insight into pediatric patients' understanding including the development of concepts of death, fears about their own death, legal interpretations of what patients understand, and how terminally ill young people continue to treasure life. It concludes by addressing ways clinicians can use the knowledge we have to communicate well with dying children and adolescents and their families.
Identifier
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10.1097/SPC.0000000000000118
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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).
2015
Adolescent
Attitude To Death
Bates Alan T
Child
Communication
Current Opinion in Supportive and Palliative Care
Fear
Humans
Kearney Julia A
May 2017 List
Palliative Care/organization & Administration
Palliative Care/psychology
Professional-family Relations
Prognosis
Terminal Care/organization & Administration
Terminal Care/psychology
Terminally Ill/legislation & jurisprudence
Terminally Ill/psychology
Time Factors
-
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/10.1097/MPH.0b013e31828e5dca" target="_blank" rel="noreferrer">http://doi.org/10.1097/MPH.0b013e31828e5dca</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
The use of an intrathecal pump to manage intractable cancer pain in a pediatric patient: a case report
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Hematology/oncology
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; Pain; Pain Measurement; Analgesics; Prognosis; Fatal Outcome; Infusion Pumps; Injections; Spinal; Implantable; Carcinoma; Intractable; Anus Neoplasms; Condylomata Acuminata; Immunologic Deficiency Syndromes; Neutropenia; Squamous Cell; Vulvar Diseases
Creator
An entity primarily responsible for making the resource
Bengali R; Huang MS; Gulur P
Description
An account of the resource
A 15-year-old girl with combined immune deficiency syndrome, diagnosed with metastatic squamous cell cancer of the anus, had significant pain secondary to vulvar-perianal condyloma. Conventional treatment with oral and intravenous analgesics was limited by significant side effects of mental status changes and urinary retention leading to clinical deterioration that precluded attempts at chemotherapy. An intrathecal pump was implanted in the challenging setting of neutropenia. There was a drastic improvement in her quality of life and the ability to tolerate further chemotherapy. The option of an intrathecal pump for pain control extended our patient's ability to enjoy important quality time with family by several months.
2014-04
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/MPH.0b013e31828e5dca" target="_blank" rel="noreferrer">10.1097/MPH.0b013e31828e5dca</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).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
Analgesics
Anus Neoplasms
Backlog
Bengali R
Carcinoma
Condylomata Acuminata
Fatal Outcome
Female
Gulur P
Huang MS
Humans
Immunologic Deficiency Syndromes
Implantable
Infusion Pumps
Injections
Intractable
Journal Article
Journal Of Pediatric Hematology/oncology
Neutropenia
Pain
Pain Measurement
Prognosis
Spinal
Squamous Cell
Vulvar Diseases
-
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/10.1203/01.pdr.0000190572.68191.13" target="_blank" rel="noreferrer">http://doi.org/10.1203/01.pdr.0000190572.68191.13</a>
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Title
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Retrospective, multicentric study of 180 children with cytochrome C oxidase deficiency
Publisher
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Pediatric Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Prognosis; Mutation; adolescent; Preschool; infant; Q3 Literature Search; Newborn; DNA; Mitochondrial/genetics; Proteins/genetics; Sequence Deletion; Membrane Proteins; Mitochondrial Proteins; Carrier Proteins; Cytochrome-c Oxidase Deficiency/diagnosis/genetics/mortality; Czech Republic; Poland; Slovakia
Creator
An entity primarily responsible for making the resource
Bohm M; Pronicka E; Karczmarewicz E; Pronicki M; Piekutowska-Abramczuk D; Sykut-Cegielska J; Mierzewska H; Hansikova H; Vesela K; Tesarova M; Houstkova H; Houstek J; Zeman J
Description
An account of the resource
A retrospective, multicenter study of 180 children with cytochrome c oxidase (COX) deficiency analyzed the clinical features, prognosis, and molecular bases of the COX deficiency. Clinical symptoms including failure to thrive, encephalopathy, hypotony, Leigh syndrome, cardiac involvement, and hepatopathy appeared in most patients early after birth or in early childhood. Two thirds of all children died. Biochemical examination revealed an isolated COX deficiency in 101 children and COX deficiency combined with disturbances of other respiratory chain complexes in 79 children. Blood and cerebrospinal fluid lactate increased in 85% and 81% of examined cases, respectively. Pathogenic mutations in mitochondrial or nuclear DNA were established in 75 patients. Mutations in surfeit locus protein 1 gene (SURF1) were found in 47 children with Leigh syndrome; 2bp deletion 845-846delCT was found in 89% of independent alleles. Mutations in a mitochondrial copper-binding protein (SCO2) gene were found in nine children with encephalomyopathy and/or cardiomyopathy; all of them were homozygotes or heterozygotes for 1541G>A mutation. Different mitochondrial DNA (mtDNA) deletion or depletion were found in nine children, mtDNA mutation 3243A>G in six, mtDNA mutation 8363G>A in two children with Leigh syndrome and mtDNA mutations 8344A>G, and 9205-9206delTA in one child each. COX deficiency represents a heterogeneous group of diseases with unfavorable prognosis. Marked prevalence of two nuclear DNA mutations (845-846delCT in the SURF1 gene and 1541G>A in the SCO2 gene) associated with COX deficiency in a Slavonic population suggests the existence of regional differences in the genetic basis of COX deficiency.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1203/01.pdr.0000190572.68191.13" target="_blank" rel="noreferrer">10.1203/01.pdr.0000190572.68191.13</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2006
Adolescent
Backlog
Bohm M
Carrier Proteins
Child
Cytochrome-c Oxidase Deficiency/diagnosis/genetics/mortality
Czech Republic
DNA
Female
Hansikova H
Houstek J
Houstkova H
Humans
Infant
Journal Article
Karczmarewicz E
Male
Membrane Proteins
Mierzewska H
Mitochondrial Proteins
Mitochondrial/genetics
Mutation
Newborn
Pediatric Research
Piekutowska-Abramczuk D
Poland
Preschool
Prognosis
Pronicka E
Pronicki M
Proteins/genetics
Q3 Scoping Review Results
Sequence Deletion
Slovakia
Sykut-Cegielska J
Tesarova M
Vesela K
Zeman J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.casemgr.2004.11.005" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.casemgr.2004.11.005</a>
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Title
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Enabling the transition to hospice through effective palliative care
Publisher
An entity responsible for making the resource available
The Case Manager
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Humans; Prognosis; Needs Assessment; Organizational Objectives; quality of life; Models; Chronic disease; Life Expectancy; Attitude to Death/ethnology; Case Management/organization & administration; Continuity of Patient Care/organization & Disease Progression; Hospice Care/organization & administration/psychology; Organizational; Palliative Care/organization & Professional Role; Referral and Consultation/organization & United States
Creator
An entity primarily responsible for making the resource
Bomba PA
Description
An account of the resource
The end of life has changed dramatically in recent years as life expectancies have increased, chronic disease rates have risen, and families, health care systems, and society have changed. As technology has advanced, death too often has become viewed by society as "failure" and even "optional." Too often, referral to hospice has come too late to be sufficiently effective. While expertise in palliation of pain and symptoms at the end of life has been developed, palliative care has not been well integrated with management of chronic diseases or incorporated into the continuum of medical management from health and wellness to the end of life. We can, and must, do better.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.casemgr.2004.11.005" target="_blank" rel="noreferrer">10.1016/j.casemgr.2004.11.005</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
2005
Attitude To Death/ethnology
Backlog
Bomba PA
Case Management/organization & administration
Chronic Disease
Continuity of Patient Care/organization & Disease Progression
Hospice Care/organization & administration/psychology
Humans
Journal Article
Life Expectancy
Models
Needs Assessment
Organizational
Organizational Objectives
Palliative Care/organization & Professional Role
Prognosis
Quality Of Life
Referral and Consultation/organization & United States
The Case Manager
-
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/10.1177/0272989x9001000109" target="_blank" rel="noreferrer">http://doi.org/10.1177/0272989x9001000109</a>
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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
Whose utilities for decision analysis?
Publisher
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Medical Decision Making
Date
A point or period of time associated with an event in the lifecycle of the resource
1990
Subject
The topic of the resource
Humans; Attitude to Health; Attitude of Health Personnel; Prognosis; Choice Behavior; Decision Support Techniques; Multivariate Analysis; Non-U.S. Gov't; Research Support; Life Expectancy; Physicians/psychology; Patients/psychology; Patient Participation/psychology; Colostomy/psychology; Game Theory
Creator
An entity primarily responsible for making the resource
Boyd NF; Sutherland HJ; Heasman KZ; Tritchler DL; Cummings BJ
Description
An account of the resource
The goal of this study was to examine sources of variation in the utilities assigned to health states. The authors selected a common clinical problem, carcinoma of the rectum, and examined the utilities assigned to colostomy, a common outcome of treatment for that disease. After preparing and validating a description of colostomy and its effects on patients' lives, utilities for the state were obtained from five groups of individuals. These comprised two groups of patients who received treatment for rectal cancer, a group of physicians and surgeons specializing in the treatment of this disease, and two groups of healthy subjects, none of whom were health professionals. Of the patients who had been treated for rectal cancer, one group had been treated surgically with the formation of colostomies and the other had been treated with radiotherapy and none had a colostomy. Utilities for colostomy were elicited using the standard gamble, category rating, and a treatment choice questionnaire. The groups differed substantially in the utilities assigned to colostomy. In general, patients with colostomies and physicians assigned significantly higher utilities than did patients who did not themselves have a colostomy. The clinical significance of these differences was examined in a simplified clinical decision problem that compared surgery (with colostomy) and radiotherapy (without colostomy) as primary treatment. The expected clinical value of these treatment alternatives was substantially influenced by the differences observed in utilities for colostomy. These results emphasize the importance of patient utilities in clinical decision making and the need to gain greater understanding of the factors that influence the utilities that patients assign to health states.
1990
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0272989x9001000109" target="_blank" rel="noreferrer">10.1177/0272989x9001000109</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
1990
Attitude Of Health Personnel
Attitude To Health
Backlog
Boyd NF
Choice Behavior
Colostomy/psychology
Cummings BJ
Decision Support Techniques
Game Theory
Heasman KZ
Humans
Journal Article
Life Expectancy
Medical Decision Making
Multivariate Analysis
Non-U.S. Gov't
Patient Participation/psychology
Patients/psychology
Physicians/psychology
Prognosis
Research Support
Sutherland HJ
Tritchler DL
-
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/10.1089/152308604773934378" target="_blank" rel="noreferrer">http://doi.org/10.1089/152308604773934378</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
Nitric oxide as a prognostic marker for neurological diseases
Publisher
An entity responsible for making the resource available
Antioxidants & Redox Signaling
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Child; Humans; Adult; Prognosis; Animals; Biomarkers of Pain; Brain/pathology; Children W/SNI; Brain Neoplasms/cerebrospinal fluid/diagnosis; Cerebrospinal Fluid; Craniocerebral Trauma/cerebrospinal fluid/diagnosis; Electron Spin Resonance Spectroscopy/methods; Meningitis/cerebrospinal fluid/diagnosis; Nervous System Diseases/cerebrospinal fluid/diagnosis/mortality; Nitric Oxide/cerebrospinal fluid/metabolism
Creator
An entity primarily responsible for making the resource
Bratasz A; Kuter I; Konior R; Goscinski I; Lukiewicz S
Description
An account of the resource
The potential value of the nitric oxide (NO) level as a prognostic marker in human brain diseases is investigated. Cerebrospinal fluid (CSF) collected from neurological patients was examined for NO content using electron paramagnetic resonance (EPR) spectroscopy. In adult patients with meningitis, the level of NO was higher than that in other groups of brain disorders, such as brain traumas and brain tumors. Very high levels of NO in the CSF appeared to be correlated with a high incidence of fatal outcomes. In children with meningitis, it was possible to differentiate between viral and bacterial origin of the disease as evidenced by the EPR analysis of the CSF. The results indicated that NO levels in the CSF can be a useful prognostic marker in neurological diseases.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/152308604773934378" target="_blank" rel="noreferrer">10.1089/152308604773934378</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
2004
Adult
Animals
Antioxidants & Redox Signaling
Backlog
Biomarkers of Pain
Brain Neoplasms/cerebrospinal fluid/diagnosis
Brain/pathology
Bratasz A
Cerebrospinal Fluid
Child
Children W/SNI
Craniocerebral Trauma/cerebrospinal fluid/diagnosis
Electron Spin Resonance Spectroscopy/methods
Goscinski I
Humans
Journal Article
Konior R
Kuter I
Lukiewicz S
Meningitis/cerebrospinal fluid/diagnosis
Nervous System Diseases/cerebrospinal fluid/diagnosis/mortality
Nitric Oxide/cerebrospinal fluid/metabolism
Prognosis
-
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/s0738-3991(98)00125-6" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0738-3991(98)00125-6</a>
Dublin Core
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Title
A name given to the resource
The attitude of young adults with chronic disease or handicaps towards enforced treatment and euthanasia
Publisher
An entity responsible for making the resource available
Patient Education And Counseling
Date
A point or period of time associated with an event in the lifecycle of the resource
1999
Subject
The topic of the resource
Female; Humans; Male; Adolescent Psychology; Attitude to Health; Medical Futility; Prognosis; Questionnaires; Attitude to Death; Physician's Role; Informed Consent; Israel; Case-Control Studies; quality of life; adolescent; decision making; Family/psychology; Treatment Refusal/psychology; Chronic Disease/psychology; Disabled Persons/psychology; Euthanasia/psychology; Terminal Care/psychology
Creator
An entity primarily responsible for making the resource
Brook U
Description
An account of the resource
One hundred fifty-nine young adults in the 17-18 year old age group suffering from chronic disease or handicap participated in this study which examined their attitudes towards enforced treatment and euthanasia in terminal patients. The comparison group included 120 healthy high school pupils of the same age group. A total of 42.6% of the chronic patients thought that enforced treatment was justified even if the patient didn't understand its importance and didn't want treatment (in comparison with 23.3% of the healthy pupils who felt the same way). Of the chronic patients, 54.4% thought that euthanasia was justified in consenting terminal patients (in comparison with 74.2% of the healthy pupils who felt the same way; P < 0.01). This may be explained by the feeling of total dependency of chronic patients upon medication and treatment. On the other hand, they may be opposed to euthanasia because of their own personal hope that a cure would be found for their severe and chronic condition. Both groups studied believed that physicians should always consider the subjective suffering of the patient and his family, as well as the short and long term prognosis when deciding about therapy.
1999
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0738-3991(98)00125-6" target="_blank" rel="noreferrer">10.1016/s0738-3991(98)00125-6</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).
Type
The nature or genre of the resource
Journal Article
1999
Adolescent
Adolescent Psychology
Attitude To Death
Attitude To Health
Backlog
Brook U
Case-Control Studies
Chronic Disease/psychology
Decision Making
Disabled Persons/psychology
Euthanasia/psychology
Family/psychology
Female
Humans
Informed Consent
Israel
Journal Article
Male
Medical Futility
Patient Education and Counseling
Physician's Role
Prognosis
Quality Of Life
Questionnaires
Terminal Care/psychology
Treatment Refusal/psychology
-
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/10.1111/dmcn.12519" target="_blank" rel="noreferrer">http://doi.org/10.1111/dmcn.12519</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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Recent trends in cerebral palsy survival. Part II: individual survival prognosis
Publisher
An entity responsible for making the resource available
Developmental Medicine And Child Neurology
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; Adult; mortality; Prognosis; Disabled Persons; California; Cerebral Palsy; Kaplan-Meier Estimate; Preschool; Life Expectancy
Creator
An entity primarily responsible for making the resource
Brooks JC; Strauss DJ; Shavelle RM; Tran Linh M; Rosenbloom L; Wu YW
Description
An account of the resource
AIM: The aim of the study was to determine survival probabilities and life expectancies for individuals with cerebral palsy based on data collected over a 28-year period in California. METHOD: We identified all individuals with cerebral palsy, aged 4 years or older, who were clients of the California Department of Developmental Services between 1983 and 2010. Kaplan-Meier survival curves were constructed for 4-year-old children, and the estimated survival probabilities were adjusted to reflect trends in mortality by calendar year. For persons aged 15, 30, 45, and 60 years, separate Poisson regression models were used to estimate age-, sex-, and disability-specific mortality rates. These mortality rates were adjusted to reflect trends of improved survival, and life expectancies were obtained using life table methods. RESULTS: The sample comprised 16,440, 14,609, 11,735, 7023, and 2375 persons at ages 4, 15, 30, 45, and 60 years, respectively. In 1983, 50% of 4-year-old children who did not lift their heads in the prone position and were tube fed lived to age 10.9 years. By 2010, the median age at death had increased to 17.1 years. In ambulatory children the probability of survival to adulthood did not change by more than 1%. Life expectancies for adolescents and adults were lower for those with more severe limitations in motor function and feeding skills, and decreased with advancing age. Life expectancies for tube-fed adolescents and adults increased by 1 to 3 years, depending on age and pattern of disability, over the course of the study period. INTERPRETATION: Over the past three decades in California there have been significant improvements in the survival of children with very severe disabilities. There have also been improvements to the life expectancy of tube-fed adults, though to a lesser extent than in children.
2014-11
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/dmcn.12519" target="_blank" rel="noreferrer">10.1111/dmcn.12519</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).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
Adult
Backlog
Brooks JC
California
Cerebral Palsy
Child
Developmental Medicine and Child Neurology
Disabled Persons
Female
Humans
Infant
Journal Article
Kaplan-Meier Estimate
Life Expectancy
Male
Mortality
Preschool
Prognosis
Rosenbloom L
Shavelle RM
Strauss DJ
Tran Linh M
Wu YW
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/10.1191/026921600674582192" target="_blank" rel="noreferrer">http://doi.org/10.1191/026921600674582192</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
Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients.
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Female; Humans; Male; Canada; Prognosis; Prospective Studies; Patient-Centered Care; Resuscitation Orders; Cross-Cultural Comparison; Europe; DNAR; Truth Disclosure; Palliative Care/px [Psychology]; Family/px [Psychology]; Physician-Patient Relations; Terminally Ill/px [Psychology]; Attitude of Health Personnel; Neoplasms/px [Psychology]; South America
Creator
An entity primarily responsible for making the resource
Bruera E; Neumann CM; Mazzocato C; Stiefel F; Sala R
Description
An account of the resource
The subject of communication between palliative care physicians and their patients regarding their diagnosis and prognosis has not been extensively researched. The purpose of this survey was to compare the attitudes and beliefs of palliative care specialists regarding communication with the terminally ill in Europe, South America, and Canada. A sample of palliative care physicians from South America (Argentina and Brazil), French-speaking Europe, and Canada were identified, and posted a questionnaire. Physicians who stated that they practised palliative care at least 30% of their time were considered evaluable as palliative care specialists. Of a total of 272 questionnaires, 228 were returned (84%); and 182/228 (81%) respondents were considered to be palliative care specialists. Palliative care physicians in all three regions believed that cancer patients should be informed of their diagnosis and the terminal nature of their illness. Physicians reported that at least 60% of their patients knew their diagnosis and the terminal stage of their illness in 52% and 24% of cases in South America, and 69% and 38% of cases in Europe, respectively. All physicians agreed that 'do not resuscitate' orders should be present, and should be discussed with the patient in all cases. While 93% of Canadian physicians stated that at least 60% of their patients wanted to know about the terminal stage of their illness, only 18% of South American, and 26% of European physicians said this (P < 0.001). Similar results were found when the physicians were asked the percentage of families who want patients to know the terminal stage of their illness. However, almost all of the physicians agreed that if they had terminal cancer they would like to know. There was a significant association between patient based decision-making and female sex (P = 0.007), older age (P = 0.04), and physicians from Canada and South America (P < 0.001). Finally, in their daily decision making, South American physicians were significantly more likely to support beneficence and justice as compared with autonomy. Canadian physicians were more likely to support autonomy as compared with beneficence. In summary, our findings suggest that there are major regional differences in the attitudes and beliefs of physicians regarding communication at the end of life. More research is badly needed on the attitudes and beliefs of patients, families, and health care professionals in different regions of the world.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1191/026921600674582192" target="_blank" rel="noreferrer">10.1191/026921600674582192</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2000
Attitude Of Health Personnel
Backlog
Bruera E
Canada
Cross-cultural Comparison
DNAR
Europe
Family/px [psychology]
Female
Humans
Journal Article
Male
Mazzocato C
Neoplasms/px [psychology]
Neumann CM
Palliative Care/px [psychology]
Palliative Medicine
Patient-centered Care
Physician-patient Relations
Prognosis
Prospective Studies
Resuscitation Orders
Sala R
South America
Stiefel F
Terminally Ill/px [Psychology]
Truth Disclosure
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2017 List
URL Address
<a href="http://journals.sagepub.com/doi/abs/10.1177/0269216317716061" target="_blank" rel="noreferrer">http://journals.sagepub.com/doi/abs/10.1177/0269216317716061</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
The 'surprise' question in paediatric palliative care: A prospective cohort study
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Paediatric; Palliative Care; Prognosis; Survival
Creator
An entity primarily responsible for making the resource
Burke K; Coombes LH; Menezes A; Anderson AK
Description
An account of the resource
Background: The question ‘would you be surprised if this patient died in the next 12-months’ is widely used for identifying adult patients in the last year of life. However, this has not yet been studied in children.
Aim: To assess the prognostic accuracy of the surprise question when used by a multidisciplinary team to predict survival outcomes of children with life-limiting conditions over a 3 and 12 month period.
Design: A prospective cohort study.
Setting/participants: Six multidisciplinary team members working in a children’s hospice answered a 3 and 12 month surprise question about 327 children who were either newly referred or receiving care at the hospice between 2011 and 2013.
Results: The prognostic accuracy of the multidisciplinary team for the 3 (and 12)month surprise question were: sensitivity 83.3% (83.3%), specificity 93.2% (70.7%), positive predictive value 41.7% (23.6%), negative predictive value 99% (97.5%) and accuracy 92.6% (71.9%). Patients with a ‘no’ response had an increased risk of death at 3 (hazard ratio, 22.94, p ⩽ 0.001) and 12 months (hazard ratio, 6.53, p ⩽ 0.001).
Conclusion: The surprise question is a highly sensitive prognostic tool for identifying children receiving palliative care who are in the last 3 and 12 months of life. The tool is accurate at recognising children during stable periods demonstrated through a high negative predictive value. In practice, this tool could help identify children who would benefit from specialist end of life care, act as a marker to facilitate communications on advance care planning and assist in resource allocation.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1177/0269216317716061" target="_blank" rel="noreferrer">https://doi.org/10.1177/0269216317716061</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).
2017
Anderson AK
August 2017 List
Burke K
Coombes LH
Menezes A
Paediatric
Palliative Care
Palliative Medicine
Prognosis
Survival
-
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>
Dublin Core
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Title
A name given to the resource
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
An unambiguous reference to the resource within a given context
<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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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
-
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/10.7326/M14-0644" target="_blank" rel="noreferrer">http://doi.org/10.7326/M14-0644</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
Decision aids for advance care planning: an overview of the state of the science.
Publisher
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Annals Of Internal 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
Humans; Terminally Ill; Prognosis; Internet; advance care planning; Decision Support Techniques
Creator
An entity primarily responsible for making the resource
Butler M; Ratner E; McCreedy E; Shippee N; Kane RL
Description
An account of the resource
Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have an advance directive in their medical record, and physicians are accurate only about 65% of the time when predicting patient preferences for intensive care. Decision aids can support the advance care planning process by providing a structured approach to informing patients about care options and prompting them to document and communicate their preferences. This review, commissioned as a technical brief by the Agency for Healthcare Research and Quality Effective Health Care Program, provides a broad overview of current use of and research related to decision aids for adult advance care planning. Using interviews of key informants and a search of the gray and published literature from January 1990 to May 2014, the authors found that many decision aids are widely available but are not assessed in the empirical literature. The 16 published studies testing decision aids as interventions for adult advance care planning found that most are proprietary or not publicly available. Some are constructed for the general population, whereas others address disease-specific conditions that have more predictable end-of-life scenarios and, therefore, more discrete choices. New decision aids should be designed that are responsive to diverse philosophical perspectives and flexible enough to change as patients gain experience with their personal illness courses. Future efforts should include further research, training of advance care planning facilitators, dissemination and access, and tapping potential opportunities in social media or other technologies.
2014-09
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7326/M14-0644" target="_blank" rel="noreferrer">10.7326/M14-0644</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
Advance Care Planning
Annals Of Internal Medicine
Backlog
Butler M
Decision Support Techniques
Humans
Internet
Journal Article
Kane RL
McCreedy E
Prognosis
Ratner E
Shippee N
Terminally Ill
-
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
n/a
URL Address
<a href="https://www.ncbi.nlm.nih.gov/pubmed/28255137" target="_blank" rel="noreferrer">https://www.ncbi.nlm.nih.gov/pubmed/28255137</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Clinical spectrum of children receiving palliative care in Malaysian Hospitals
Publisher
An entity responsible for making the resource available
Medical Journal Of Malaysia
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Child Care;hospital;malaysia;palliative Therapy; Acute Lymphoblastic Leukemia; Adolescent; Adult; Bereavement; Caregiver; Cerebral Palsy; Child; Chromosome; Chromosome Aberration; Clinical Trial; Congenital Malformation; Controlled Clinical Trial; Controlled Study; Cross Sectional Study; Diagnosis; Duchenne Muscular Dystrophy; Education; Female; Follow Up; Hospital Admission; Human; Icd-10; Infant; Major Clinical Study; Malaysia; Male; Malignant Neoplasm; Multicenter Study; Needs Assessment; Newborn; Observational Study; Patient Referral; Pediatrician; Prognosis; Review; Spinal Muscular Atrophy
Creator
An entity primarily responsible for making the resource
Chong LA; Khalid F; Khoo TB; Teh SH; Kuan GL; Abdul Manaf AM; Alias E; Chieng CH; Razali H; Ong GB; Hedra ZS; Abdul Shukor INC; Wang JJ
Description
An account of the resource
Introduction: Awareness for paediatric palliative care has resulted in the impetus for paediatrician-led palliative care services across Malaysia. However, there is paucity of local data on patients receiving hospital-based paediatric palliative care. We aim to review the clinical spectrum of patients referred to these services. Methods: An observational study of children aged between 0-18 years receiving palliative care at 13 hospitals between 1st January and 31st December 2014 was carried out. Results: There were 315 patients analysed, 90 (28.6%) and 46 (14.6%) were neonates and adolescents respectively. The main ICD-10 diagnostic categories for all patients were identified to be 'Congenital malformations, deformations and chromosomal abnormalities' 117 (37.1%), 'Diseases of nervous system' 76 (24.1%) and 'Neoplasms' 60 (19.0%). At referral 156 (50%) patients had holistic needs assessments. Patients with 'Diseases of nervous system' were assessed to have significantly more physical needs than the other two diagnostic categories. Majority of patients who knew of their diagnosis and prognosis were those with malignancy. Over a fifth of referrals were at their terminal admission. Of 144 who died, 111 (77.1%) had advanced care plans. There was bereavement follow-up in 98 (68.1%) patients. Conclusion: Patients referred for palliative care have varied diagnoses and needs. To ensure all paediatricians are competent to deliver quality care to all children, further education and training initiatives is imperative. Copyright © 2017, Malaysian Medical Association. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://www.ncbi.nlm.nih.gov/pubmed/28255137" target="_blank" rel="noreferrer">28255137</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).
2017
Abdul Manaf AM
Abdul Shukor INC
Acute Lymphoblastic Leukemia
Adolescent
Adult
Alias E
Bereavement
Caregiver
Cerebral Palsy
Chieng CH
Child
Child Care
Chong LA
Chromosome
Chromosome Aberration
Clinical Trial
Congenital Malformation
Controlled Clinical Trial
Controlled Study
Cross Sectional Study
Diagnosis
Duchenne Muscular Dystrophy
Education
Female
Follow Up
Hedra ZS
Hospital
Hospital Admission
Human
Icd-10
Infant
Khalid F
Khoo TB
Kuan GL
Major Clinical Study
malaysia
Male
Malignant Neoplasm
Medical Journal Of Malaysia
Multicenter Study
Needs Assessment
Newborn
Observational Study
Ong GB
Palliative Therapy
Patient Referral
Pediatrician
Prognosis
Razali H
Review
Spinal Muscular Atrophy
Teh SH
Wang JJ
-
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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=10678857" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=10678857</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
Extent and determinants of error in doctors' prognoses in terminally ill patients: prospective cohort study
Publisher
An entity responsible for making the resource available
Bmj
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Male; Survival Rate; Cohort Studies; Prognosis; Prospective Studies; Non-U.S. Gov't; Human; Support; Terminally Ill; Clinical Competence/standards; Medical Errors/statistics & numerical data; Terminal Care/standards
Creator
An entity primarily responsible for making the resource
Christakis NA; Lamont EB
Description
An account of the resource
OBJECTIVE: To describe doctors' prognostic accuracy in terminally ill patients and to evaluate the determinants of that accuracy. DESIGN: Prospective cohort study. SETTING: Five outpatient hospice programmes in Chicago. PARTICIPANTS: 343 doctors provided survival estimates for 468 terminally ill patients at the time of hospice referral. MAIN OUTCOME MEASURES: Patients' estimated and actual survival. RESULTS: Median survival was 24 days. Only 20% (92/468) of predictions were accurate (within 33% of actual survival); 63% (295/468) were overoptimistic and 17% (81/468) were overpessimistic. Overall, doctors overestimated survival by a factor of 5.3. Few patient or doctor characteristics were associated with prognostic accuracy. Male patients were 58% less likely to have overpessimistic predictions. Non-oncology medical specialists were 326% more likely than general internists to make overpessimistic predictions. Doctors in the upper quartile of practice experience were the most accurate. As duration of doctor-patient relationship increased and time since last contact decreased, prognostic accuracy decreased. CONCLUSION: Doctors are inaccurate in their prognoses for terminally ill patients and the error is systematically optimistic. The inaccuracy is, in general, not restricted to certain kinds of doctors or patients. These phenomena may be adversely affecting the quality of care given to patients near the end of life.
2000
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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
2000
Backlog
Bmj
Christakis NA
Clinical Competence/standards
Cohort Studies
Human
Journal Article
Lamont EB
Male
Medical Errors/statistics & numerical data
Non-U.S. Gov't
Prognosis
Prospective Studies
Support
Survival Rate
Terminal Care/standards
Terminally Ill
-
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/10.7314/apjcp.2013.14.9.5477" target="_blank" rel="noreferrer">http://doi.org/10.7314/apjcp.2013.14.9.5477</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
Exploring communication difficulties in pediatric hematology: oncology nurses
Publisher
An entity responsible for making the resource available
Asian Pacific Journal Of Cancer Prevention
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Female; Humans; Male; Neoplasms; Terminal Care; Adult; Attitude of Health Personnel; Prognosis; Follow-Up Studies; Oncology Nursing; Communication Barriers; Qualitative Research; Pediatric Nursing; Nurse-Patient Relations; Hospitals; Hematology; Turkey; Nursing Staff; Pediatric; Hospital
Creator
An entity primarily responsible for making the resource
Citak EA; Toruner Ebru Kilicarslan; Gunes NB
Description
An account of the resource
BACKGROUND: Communication plays an important role for the well being of patients, families and also health care professionals in cancer care. Conversely, ineffective communication may cause depression, increased anxiety, hopelessness and decreased of quality life for patients, families and also nurses. OBJECTIVE: This study aimed to explore communication difficulties of pediatric hematology/oncology nurses with patients and their families, as well as their suggestions about communication difficulties. MATERIALS AND METHODS: It was conducted in a pediatric hematology/oncology hospital in Ankara, Turkey. Qualitative data were collected by focus groups, with 21 pediatric hematology/oncology nursing staff from three groups. Content analysis was used for data analysis. RESULTS: Findings were grouped in three main categories. The first category concerned communication difficulties, assessing problems in responding to questions, ineffective communication and conflicts with the patient's families. The second was about the effects of communication difficulties on nurses and the last main category involved suggestions for empowering nurses with communication difficulties, the theme being related to institutional issues. CONCLUSIONS: Nurses experience communication difficulties with children and their families during long hospital stays. Communication difficulties particularly increase during crisis periods, like at the time of first diagnosis, relapse, the terminal stage or on days with special meaning such as holidays. The results obtained indicate that pediatric nurses and the child/family need to be supported, especially during crisis periods. Feeling of empowerment in communication will improve the quality of care by reducing the feelings of exhaustion and incompetence in nurses.
2013
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7314/apjcp.2013.14.9.5477" target="_blank" rel="noreferrer">10.7314/apjcp.2013.14.9.5477</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
2013
Adult
Asian Pacific Journal Of Cancer Prevention
Attitude Of Health Personnel
Backlog
Child
Citak EA
Communication Barriers
Female
Follow-up Studies
Gunes NB
Hematology
Hospital
Hospitals
Humans
Journal Article
Male
Neoplasms
Nurse-patient Relations
Nursing Staff
Oncology Nursing
Pediatric
Pediatric Nursing
Prognosis
Qualitative Research
Terminal Care
Toruner Ebru Kilicarslan
Turkey
-
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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16258123" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16258123</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
Inter-religious perspectives on hope and limits in cancer treatment: one Buddhist chaplain's response to the case
Publisher
An entity responsible for making the resource available
Journal Of Clinical Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Humans; Prognosis; Family Health; PedPal Lit; decision making; Palliative Care; Religion; Buddhism; Mother-Child Relations; Neoplasms/drug therapy/pathology/psychology
Creator
An entity primarily responsible for making the resource
Corbett-Hemeyer J
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2005
2005
Backlog
Buddhism
Corbett-Hemeyer J
Decision Making
Family Health
Humans
Journal Article
Journal Of Clinical Oncology
Mother-child Relations
Neoplasms/drug therapy/pathology/psychology
Palliative Care
PedPal Lit
Prognosis
Religion
-
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
A name given to the resource
Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope
Publisher
An entity responsible for making the resource available
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
-
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/10.1007/s00520-002-0429-1" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00520-002-0429-1</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Resource utilization and cost of episodes of febrile neutropenia in children with acute leukemias and lymphomas
Publisher
An entity responsible for making the resource available
Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; Prognosis; Brazil; adolescent; Preschool; Non-U.S. Gov't; Research Support; infant; Costs and Cost Analysis; Health Services/utilization; Fever/economics/etiology/therapy; Health Care Costs/statistics & numerical data; Leukemia/complications; Lymphoma/complications; Neutropenia/economics/etiology/therapy
Creator
An entity primarily responsible for making the resource
Costa VC; Ferraz MB; Petrilli AS; Pereira CA; Rogerio JW
Description
An account of the resource
The resource utilization and cost of 51 episodes of febrile neutropenia in children with leukemia and lymphomas who were admitted to the Pediatric Oncology Institute (GRAAC) of the Federal University of Sao Paulo were analyzed. Patients aged 60 days to 21 years with confirmed diagnoses of acute myeloid leukemia, acute lymphoid leukemia, non-Hodgkin lymphoma, or Hodgkins disease who presented axillary temperature above 38 degrees C at least once episode, or between 37.5 degrees C and 38 degrees C on three occasions during a 24-h period, neutrophil count below 500/mm(3), or between 500/mm(3)and 1,000/mm(3) but expected to fall below 500/mm(3) were included in the study. The patients' ages varied between 1 and 15.6 years, and 67% of the patients were male. The median cost per treated episode was US dollars 2,660 (2,039). Hospitalization costs accounted for 62% of the total cost of the treatment, antibacterials accounting for 23%. Episodes in patients with documented infections had a higher median direct cost than episodes in patients with fever of unknown origin (P=0.018). There was a trend for a higher median direct cost in episodes among patients with a worse prognostic factor, such as type of underlying disease, presence of documented infection, and longer duration of neutropenia. This is the first study to evaluate the economics of febrile neutropenia episodes in Brazil, and serves as a basis for resource utilization and costs incurred in the treatment of such patients in this country.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00520-002-0429-1" target="_blank" rel="noreferrer">10.1007/s00520-002-0429-1</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
2003
Adolescent
Adult
Backlog
Brazil
Child
Costa VC
Costs And Cost Analysis
Female
Ferraz MB
Fever/economics/etiology/therapy
Health Care Costs/statistics & numerical data
Health Services/utilization
Humans
Infant
Journal Article
Leukemia/complications
Lymphoma/complications
Male
Neutropenia/economics/etiology/therapy
Non-U.S. Gov't
Pereira CA
Petrilli AS
Preschool
Prognosis
Research Support
Rogerio JW
Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer
-
Dublin Core
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Title
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May 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216319874689" target="_blank" rel="noreferrer noopener">10.1177/0269216319874689</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
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
-
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/10.1191/0269216304pm906ra" target="_blank" rel="noreferrer">http://doi.org/10.1191/0269216304pm906ra</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
Research methodology: cancer cachexia syndrome
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Humans; Prognosis; Ambulatory Care; quality of life; Nutritional Status; Neoplasms/complications; Cachexia/etiology; Body Composition; Weight Gain; Placebo Effect; Biomedical Research/methods; Exercise/physiology
Creator
An entity primarily responsible for making the resource
Dahele M; Fearon KC
Description
An account of the resource
Cachexia is a syndrome and therefore does not have a specific definition. Patients are characterized by the presence of anorexia, early satiety, weight loss, weakness, anaemia and oedema. These features occur to a variable extent in different patients and may change in severity during the course of a patient's illness. The multifactorial origin of cachexia precludes a uniform pathophysiological definition. Taken together these factors have hindered clinical studies both at a fundamental level and in terms of the introduction of effective therapy. The advent of novel therapeutic targets (e.g., ubiquitin-proteasome pathway) and biological response modifiers has opened possibilities for new clinical trials in cachexia. Regulatory authorities feel it is important not only to demonstrate efficacy in terms of patients' nutritional status (e.g., lean body mass) but also functional status (e.g., performance status). This article reviews current methods to assess the latter. Methods focused on measuring physical activity level (e.g., doubly labelled water technique or physical activity meters) promise objective data which can be readily interpreted in terms of clinically meaningful benefit.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1191/0269216304pm906ra" target="_blank" rel="noreferrer">10.1191/0269216304pm906ra</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
2004
Ambulatory Care
Backlog
Biomedical Research/methods
Body Composition
Cachexia/etiology
Dahele M
Exercise/physiology
Fearon KC
Humans
Journal Article
Neoplasms/complications
Nutritional Status
Palliative Medicine
Placebo Effect
Prognosis
Quality Of Life
Weight Gain
-
Dublin Core
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Title
A name given to the resource
2018 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 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>
Dublin Core
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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
An entity responsible for making the resource available
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
-
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/S0300-9572(98)00097-5" target="_blank" rel="noreferrer">http://doi.org/10.1016/S0300-9572(98)00097-5</a>
<a href="http://www.sciencedirect.com/science/article/pii/S0300957298000975" target="_blank" rel="noreferrer">http://www.sciencedirect.com/science/article/pii/S0300957298000975</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
Impact of survival probability, life expectancy, quality of life and patient preferences on do-not-attempt-resuscitation orders in a hospital
Publisher
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Resuscitation
Date
A point or period of time associated with an event in the lifecycle of the resource
1998
Subject
The topic of the resource
decision making; Prognosis; cardiopulmonary resuscitation; quality of life; DNAR Outcomes; Survival
Creator
An entity primarily responsible for making the resource
de Vos R; Koster RW; de Haan RJ
Description
An account of the resource
Consensus exists that a do-not-attempt-resuscitation order (DNAR) is appropriate if a resuscitation attempt is futile. Less agreement exists when this point is reached. We investigated the influence of three major considerations for in-hospital DNAR orders: expected survival probability after resuscitation, prospects of the patients' current condition without a cardiac arrest and the patients' autonomous decision not to want resuscitation. We calculated an expected survival probability according to two multi-morbidity prediction scores for each patient, assuming the event of cardiac arrest. The prospects of the current condition without a cardiac arrest was estimated by the patients' physician, in terms of life expectancy and quality of life (level of dependency after discharge and pain). The patients' preference was documented from the medical records. A total of 470 patients were included in the study. Fifty-eight patients (12%) had a DNAR-order, 11 of these patients (19%) wanted no resuscitation. The patients' prospects (life expectancy, dependency after discharge), and age proved to be independently associated with the presence of a DNAR order. The odds ratio (OR) for the presence of a DNAR order was 37 (CL 14–107) for an estimated life expectancy less than 3 months, 13 (CL 4–41) for a life in a nursing home and four (CL 2–12) for an age of 80 years and older. Expected survival probability after resuscitation and pain were not independently associated with a DNAR order. We conclude that resuscitation is considered futile on the basis of the patients' age and prospects without cardiac arrest and that the impact of expected survival probability on these decisions is small.
1998-11
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/S0300-9572(98)00097-5" target="_blank" rel="noreferrer">10.1016/S0300-9572(98)00097-5</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
1998
Backlog
Cardiopulmonary Resuscitation
de Haan RJ
de Vos R
Decision Making
DNAR Outcomes
Journal Article
Koster RW
Prognosis
Quality Of Life
Resuscitation
Survival
-
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
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
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
Primary palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members
Publisher
An entity responsible for making the resource available
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
An unambiguous reference to the resource within a given context
<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
-
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.jpeds.2005.12.028" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpeds.2005.12.028</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
The natural history of medium-chain acyl CoA dehydrogenase deficiency in the Netherlands: clinical presentation and outcome
Publisher
An entity responsible for making the resource available
The Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Humans; infant; Cohort Studies; Adult; Prognosis; Middle Aged; Disease Progression; Netherlands; Severity of Illness Index; Longitudinal Studies; adolescent; Preschool; infant; Newborn; retrospective studies; Acyl-CoA Dehydrogenase/deficiency/genetics; Mutation/genetics; Metabolism; Inborn Errors/complications/diagnosis/genetics
Creator
An entity primarily responsible for making the resource
Derks TG; Reijngoud DJ; Waterham HR; Gerver WJ; van den Berg MP; Sauer PJ; Smit GP
Description
An account of the resource
OBJECTIVES: To describe the clinical presentation and long-term follow-up of a large cohort of patients with medium-chain acyl-CoA dehydrogenase (MCAD) deficiency. STUDY DESIGN: A nationwide, retrospective analysis of clinical presentation and follow-up in 155 Dutch patients with MCAD deficiency. RESULTS: Most patients presented between 3 months and 5.1 years of age; 13% had symptoms as neonates not exclusively related to breast-feeding. An acute presentation before the diagnosis was made resulted in a mortality of 22% (25/114), whereas 21% (19/89) developed disabilities after the diagnosis. On follow-up, a total of 44 patients reported fatigue (35%; 28/80), muscle pain (31%; 25/80), and/or reduced exercise tolerance (39%; 31/80). Cardiac evaluation in 11 adult patients revealed no abnormalities in cardiac function explaining these complaints. Children with MCAD deficiency readily become overweight. CONCLUSIONS: Mortality and morbidity were high in undiagnosed children with MCAD deficiency; establishment of the diagnosis significantly improves outcome. Strikingly, after the diagnosis and initiation of treatment, overweight and chronic complaints (fatigue, muscle pain, and reduced exercise tolerance) were prominent.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2005.12.028" target="_blank" rel="noreferrer">10.1016/j.jpeds.2005.12.028</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).
Type
The nature or genre of the resource
Journal Article
2006
Acyl-CoA Dehydrogenase/deficiency/genetics
Adolescent
Adult
Backlog
Child
Cohort Studies
Derks TG
Disease Progression
Gerver WJ
Humans
Inborn Errors/complications/diagnosis/genetics
Infant
Journal Article
Longitudinal Studies
Metabolism
Middle Aged
Mutation/genetics
Netherlands
Newborn
Preschool
Prognosis
Reijngoud DJ
Retrospective Studies
Sauer PJ
Severity Of Illness Index
Smit GP
The Journal Of Pediatrics
van den Berg MP
Waterham HR
-
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/10.1016/0168-8227(90)90052-u" target="_blank" rel="noreferrer">http://doi.org/10.1016/0168-8227(90)90052-u</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
Beta-endorphin levels of children in acute stress
Publisher
An entity responsible for making the resource available
Diabetes Research And Clinical Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
1990
Subject
The topic of the resource
Child; Humans; infant; Prognosis; Follow-Up Studies; Acute Disease; Preschool; infant; beta-Endorphin/blood; Biomarkers of Pain; Newborn; Biomarkers Reference List; Blood Glucose/analysis; Hyperglycemia/blood/epidemiology/pathology; Insulin/blood; Stress/blood/epidemiology
Creator
An entity primarily responsible for making the resource
Dindar A; Gunoz H; Neyzi O
Description
An account of the resource
In this study aiming to clarify the relationships between beta-endorphin and glucose levels, beta-endorphin levels were determined in children in acute stress. The study was carried out on 32 critically ill children between 5 days and 12 years presenting with clinical symptoms of acute infectious conditions. 11 healthy children were taken as controls. The results showed that although beta-endorphin levels were elevated in all critically ill patients, these levels were significantly higher than control values in hyperglycaemic cases. The insulin levels were also elevated. A follow-up of nine of the hyperglycaemic cases showed a significant decline in beta-endorphin and insulin levels with recovery. Glucose tolerance was also normal. These results confirm the reports of many other studies on the role of beta-endorphin as a stress hormone.
1990
Identifier
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<a href="http://doi.org/10.1016/0168-8227(90)90052-u" target="_blank" rel="noreferrer">10.1016/0168-8227(90)90052-u</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
1990
Acute Disease
Backlog
beta-Endorphin/blood
Biomarkers of Pain
Biomarkers Reference List
Blood Glucose/analysis
Child
Diabetes Research And Clinical Practice
Dindar A
Follow-up Studies
Gunoz H
Humans
Hyperglycemia/blood/epidemiology/pathology
Infant
Insulin/blood
Journal Article
Newborn
Neyzi O
Preschool
Prognosis
Stress/blood/epidemiology
-
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.2011.0401" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2011.0401</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
Survival duration among patients with a noncancer diagnosis admitted to a palliative care unit: a retrospective study
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
2012
Subject
The topic of the resource
Female; Humans; Male; retrospective studies; Palliative Care; Terminally Ill; Adult; Prognosis; Medical Audit; Aged; Middle Aged; Length of Stay; Ontario; Survival Analysis; Regression Analysis; 80 and over
Creator
An entity primarily responsible for making the resource
Downar J; Chou Yang-Chieh; Ouellet D; La Delfa Ignazio; Blacker S; Bennett M; Petch C; Cheng SM
Description
An account of the resource
BACKGROUND: Palliative care unit (PCU) beds are a limited resource in Canada, so PCU admission is restricted to patients with a short prognosis. Anecdotally, PCUs further restrict admission of patients with noncancer diagnoses out of fear that they will "oversurvive" and reduce bed availability. This raises concerns that noncancer patients have unequal access to PCU resources. PURPOSE/METHODS: To clarify survival duration of patients with a noncancer diagnosis, we conducted a retrospective review of all admissions to four PCUs in Toronto, Canada, over a 1-year period. We measured associations between demographic data, prognosis, Palliative Performance Score (PPS), length of stay (LOS), and waiting time. RESULTS: We collected data for 1000 patients, of whom 21% had noncancer diagnoses. Noncancer patients were older, with shorter prognoses and lower PPS scores on admission. Noncancer patients had shorter LOS (14 versus 24, p<0.001) than cancer patients and a similar likelihood of being discharged alive to cancer patients. Noncancer patients had a trend to lower LOS across a broad range of demographic, diagnostic, prognostic, and PPS categories. Multivariable analysis showed that LOS was not associated with the diagnosis of cancer (p=0.36). DISCUSSION/CONCLUSION: Noncancer patients have a shorter LOS than cancer patients and a similar likelihood of being discharged alive from a PCU than cancer patients, and the diagnosis of cancer did not correlate with survival in our study population. Our findings demonstrate that noncancer patients are not "oversurviving," and that referring physicians and PCUs should not reject or restrict noncancer referrals out of concern that these patients are having a detrimental impact on PCU bed availability.
Identifier
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<a href="http://doi.org/10.1089/jpm.2011.0401" target="_blank" rel="noreferrer">10.1089/jpm.2011.0401</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
2012
80 And Over
Adult
Aged
Backlog
Bennett M
Blacker S
Cheng SM
Chou Yang-Chieh
Downar J
Female
Humans
Journal Article
Journal of Palliative Medicine
La Delfa Ignazio
Length Of Stay
Male
Medical Audit
Middle Aged
Ontario
Ouellet D
Palliative Care
Petch C
Prognosis
Regression Analysis
Retrospective Studies
Survival Analysis
Terminally Ill
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2017 List
Dublin Core
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Title
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Affording Opportunities To Discuss Deterioration In Paediatric Palliative Care Consultations: A Conversation Analytic Study
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
2017
Subject
The topic of the resource
Child; Communication; Family Management; Only Child; Paediatrics; Palliative Care; Prognosis; Referral And Consultation
Creator
An entity primarily responsible for making the resource
Ekberg S; Danby S; Herbert A; Bradford N; Yates P
Description
An account of the resource
OBJECTIVE: Discussing the potential deterioration of a child who has a life-limiting condition has recognised benefits for future care, but can be challenging in a clinical context where uncertain illness trajectories are common. Existing research is restricted to indirect forms of evidence such as self-report data from clinicians and families. This study directly explores how discussions about deterioration are managed within actual paediatric palliative care consultations. METHODS: 9 consultations were video recorded in an Australian paediatric palliative care service. Each consultation involved the same paediatric palliative care specialist. Conversation analysis was used to identify and explore recurrent ways in which discussions about deterioration came to be realised. FINDINGS: The study identified two communicative practices used by a paediatric palliative care specialist that afforded opportunities to discuss deterioration: (1) soliciting the family's agenda for the consultation; (2) initiating and maintaining topics where discussing deterioration is a relevant possibility. Across these different practices, a common feature was indirect initiation of discussions about deterioration. This approach made such discussions possible, but without mandating or even suggesting that such discussion must occur. CONCLUSIONS: These communicative practices balance the benefit of discussing deterioration against a recognised importance of allowing discussions to be directed by a child's family. This was achieved by creating opportunities for discussing deterioration, without making such discussions necessary.
Identifier
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10.1136/bmjspcare-2016-001130
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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
BMJ Supportive & Palliative Care
Bradford N
Child
Communication
Danby S
Ekberg S
Family Management
Herbert A
May 2017 List
Only Child
Paediatrics
Palliative Care
Prognosis
Referral And Consultation
Yates P
-
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
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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
An entity primarily responsible for making the resource
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
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<a href="http://doi.org/10.1002/pbc.24864" target="_blank" rel="noreferrer">10.1002/pbc.24864</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
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
-
Dublin Core
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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>
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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Preliminary Study of Neurodevelopmental Outcomes and Parenting Stress in Pediatric Mitochondrial Disease
Publisher
An entity responsible for making the resource available
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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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).
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
-
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.2008.0206" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2008.0206</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
Prediction of pediatric death in the year after hospitalization: a population-level retrospective cohort study
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
2009
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Young Adult; Cohort Studies; Patient Discharge; Pediatrics; Hospital Mortality; Logistic Models; Prognosis; adolescent; Preschool; infant; Models; Newborn; retrospective studies; Theoretical; mortality; Pennsylvania/epidemiology
Creator
An entity primarily responsible for making the resource
Feudtner C; Hexem KR; Shabbout M; Feinstein JA; Sochalski J; Silber JH
Description
An account of the resource
BACKGROUND: The study of how the quality of pediatric end-of-life care varies across systems of health care delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children. OBJECTIVE: To develop a prognostication models using administratively available data to predict the probability of in-hospital and 1-year postdischarge death. METHODS: Retrospective cohort study of 0-21 year old patients admitted to Pennsylvania hospitals from 1994-2001 and followed for 1-year postdischarge mortality, assessing logistic regression models ability to predict in-hospital and 1-year postdischarge deaths. RESULTS: Among 678,365 subjects there were 2,202 deaths that occurred during the hospitalization (0.32% of cohort) and 860 deaths that occurred 365 days or less after hospital discharge (0.13% of cohort). The model predicting hospitalization deaths exhibited a C statistic of 0.91, with sensitivity of 65.9% and specificity of 92.9% at the 99th percentile cutpoint; while the model predicting 1-year postdischarge deaths exhibited a C statistic of 0.92, with sensitivity of 56.1% and specificity of 98.4% at the 99th percentile cutpoint. CONCLUSIONS: Population-level mortality prognostication of hospitalized children using administratively available data is feasible, assisting the comparison of health care services delivered to children with the highest probability of dying during and after a hospital admission.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2008.0206" target="_blank" rel="noreferrer">10.1089/jpm.2008.0206</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
2009
Adolescent
Backlog
Child
Cohort Studies
Feinstein JA
Female
Feudtner C
Hexem KR
Hospital Mortality
Humans
Infant
Journal Article
Journal of Palliative Medicine
Logistic Models
Male
Models
Mortality
Newborn
Patient Discharge
Pediatrics
Pennsylvania/epidemiology
Preschool
Prognosis
Retrospective Studies
Shabbout M
Silber JH
Sochalski J
Theoretical
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/10.1215/15228517-2007-038" target="_blank" rel="noreferrer">http://doi.org/10.1215/15228517-2007-038</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
Prognostic factors for survival in 676 consecutive patients with newly diagnosed primary glioblastoma
Publisher
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Neuro-oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
adolescent; Female; Humans; Male; Adult; Prognosis; Aged; Middle Aged; Treatment Outcome; Kaplan-Meier Estimate; Antineoplastic Agents; Combined Modality Therapy; 80 and over; Brain neoplasms; Disease-Free Survival; Local; Glioblastoma; Neoplasm Recurrence; Neurosurgical Procedures; Radiotherapy
Creator
An entity primarily responsible for making the resource
Filippini G; Falcone C; Boiardi A; Broggi G; Bruzzone MG; Caldiroli D; Farina R; Farinotti M; Fariselli L; Finocchiaro G; Giombini S; Pollo B; Savoiardo M; Solero CL; Valsecchi MG; Brain Cancer Register of the Fondazione IRCCS (Istituto Ricovero e Cura a Carattere Scientifico) Istituto Neurologico Carlo Besta
Description
An account of the resource
Reliable data on large cohorts of patients with glioblastoma are needed because such studies differ importantly from trials that have a strong bias toward the recruitment of younger patients with a higher performance status. We analyzed the outcome of 676 patients with histologically confirmed newly diagnosed glioblastoma who were treated consecutively at a single institution over a 7-year period (1997-2003) with follow-up to April 30, 2006. Survival probabilities were 57% at 1 year, 16% at 2 years, and 7% at 3 years. Progression-free survival was 15% at 1 year. Prolongation of survival was significantly associated with surgery in patients with a good performance status, whatever the patient's age, with an adjusted hazard ratio of 0.55 (p < 0.001) or a 45% relative decrease in the risk of death. Radiotherapy and chemotherapy improved survival, with adjusted hazard ratios of 0.61 (p = 0.001) and 0.89 (p = 0.04), respectively, regardless of age, performance status, or residual tumor volume. Recurrence occurred in 99% of patients throughout the follow-up. Reoperation was performed in one-fourth of these patients but was not effective, whether performed within 9 months (hazard ratio, 0.86; p = 0.256) or after 9 months (hazard ratio, 0.98; p = 0.860) of initial surgery, whereas second-line chemotherapy with procarbazine, lomustine, and vincristine (PCV) or with temozolomide improved survival (hazard ratio, 0.77; p = 0.008). Surgery followed by radiotherapy and chemotherapy should be considered in all patients with glioblastoma, and these treatments should not be withheld because of increasing age alone. The benefit of second surgery at recurrence is uncertain, and new trials are needed to assess its effectiveness. Chemotherapy with PCV or temozolomide seems to be a reasonable option at tumor recurrence.
2008-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1215/15228517-2007-038" target="_blank" rel="noreferrer">10.1215/15228517-2007-038</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
2008
80 And Over
Adolescent
Adult
Aged
Antineoplastic Agents
Backlog
Boiardi A
Brain Cancer Register of the Fondazione IRCCS (Istituto Ricovero e Cura a Carattere Scientifico) Istituto Neurologico Carlo Besta
Brain Neoplasms
Broggi G
Bruzzone MG
Caldiroli D
Combined Modality Therapy
Disease-Free Survival
Falcone C
Farina R
Farinotti M
Fariselli L
Female
Filippini G
Finocchiaro G
Giombini S
Glioblastoma
Humans
Journal Article
Kaplan-Meier Estimate
Local
Male
Middle Aged
Neoplasm Recurrence
Neuro-oncology
Neurosurgical Procedures
Pollo B
Prognosis
Radiotherapy
Savoiardo M
Solero CL
Treatment Outcome
Valsecchi MG
-
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
An entity responsible for making the resource available
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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.28826" target="_blank" rel="noreferrer noopener">10.1002/pbc.28826</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).
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