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40
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Dublin Core
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Title
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April 2024 List
Text
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Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1111/apa.17084" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.17084</a>
Dublin Core
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Title
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Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
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Infant Newborn; Critical Illness; article; human; newborn; quality of life; palliative therapy; health care; parent; interpersonal communication; shared decision making; clinical outcome; neonatal intensive care unit; communication disorder; critically ill patient; decision making; prenatal diagnosis; semi structured interview; conversation; personal experience; purposive sample; clinician
Creator
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Kukora S; Krenz C; DeVries R; Spector-Bagdady K
Description
An account of the resource
Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations rather than engage with empathy.1 Poor communication in the neonatal intensive care unit (NICU) when an infant is critically ill or dies can have deleterious effects on decision-making and long-term parental coping.2 Provision of information is imperative to shared decision-making about clinical therapies or care goals.3 Failure to effectively convey information could lead to decisions that do not align with parents' values, associated with long-term grief, decisional conflict, and regret.4, 5 Additionally, inability of clinicians to listen and engage with parents can lead to mistrust in the care team.3, 6 Parents recall in detail how serious news is delivered even years after hospitalisation,7 and their perceptions of these interactions impact their well-being.4, 7 Despite this, few studies have investigated parents' perspectives on serious news communication in the NICU. In this study, we sought to better characterise the communication problems parents of critically ill infants perceive in the antenatal and neonatal period around serious news conversations and to identify potential clinical care consequences arising from these communication issues...
Identifier
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<a href="http://doi.org/10.1111/apa.17084" target="_blank" rel="noreferrer noopener">10.1111/apa.17084</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).
2024
Acta Paediatrica
April List 2024
Article
Clinical Outcome
Clinician
communication disorder
Conversation
Critical Illness
Critically Ill Patient
Decision Making
DeVries R
Health Care
Human
Infant Newborn
Interpersonal Communication
Krenz C
Kukora S
Neonatal Intensive Care Unit
Newborn
Palliative Therapy
Parent
Personal Experience
Prenatal Diagnosis
Purposive Sample
Quality Of Life
Semi Structured Interview
shared decision making
Spector-Bagdady K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
February 2024 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
February List 2024
URL Address
<a href="http://doi.org/10.2174/0118715303278702231019093844" target="_blank" rel="noreferrer noopener"> http://doi.org/10.2174/0118715303278702231019093844</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
Palliative Care in Children with Inherited Metabolic Diseases: Why does it matter?
Publisher
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Endocrine, Metabolic and Immune Disorders - Drug Targets
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; cohort analysis; female; hospital admission; human; male; retrospective study; palliative therapy; intensive care; hospitalization; follow up; medical device; school child; home care; enteric feeding; patient referral; neurologic disease; noninvasive ventilation; communication disorder; motor dysfunction; drug combination; metabolic disorder; emergency ward; symptom assessment; place of death; bereavement support; emotional support; respiratory equipment
Creator
An entity primarily responsible for making the resource
Pereira MJ; Nogueira A; Grilo E; Ferreira S; Diogo L; Cancelinha C
Description
An account of the resource
Background: Inherited metabolic diseases (IMD) bring considerable burden on the child and family. Challenging areas for health care include the identification of distressing symptoms, prognostic uncertainty, and bereavement. Literature regarding the impact of paediatric palliative care (PPC) is scarce. Objective: This study aims to evaluate children with IMD referred to a PPC team (PPCT) and to analyse its impact on home care, decision to limit treatment (DLT), use of hospital resources (emergency department admissions - EDA, hospital admissions - HA, intensive care admissions - ICA) and end of life support. Methods: Retrospective cohort study of children with IMD referred to a specialized PPCT (2016-2022). We assessed clinical data: symptoms control, time of referral and length of the follow-up period, DLT, device dependency, use of hospital resources prior to and after referral, place of death and end-of-life support. Results: Fifteen children with IMD were referred to PPCT (8% of total referrals), with median age of 7 years (4 months - 17 years); 53% female. All children were non or pre-verbal. Most prevalent symptoms were neurologic and motor impairment (100%), respiratory and gastrointestinal (75%). 80% had tube feeding, 90% had some respiratory device (non-invasive ventilation in 23%). All children had multidrug use, with a mean of 6 drugs per child (2-9). 73% had home PPC and 80% had DLT planned. Nine children died (78% in hospital), after a mean of 17 months of follow-up (2 months to 4 years), all with DLT planned. 67% had support from PPCT at the end of life. All these families received emotional support. Decrease in EDA (10 vs 2) was noticed before and after PPCT. No impact was seen in HA and ICA (6 vs 5 and 1 vs 1, respectively) and there was a longer mean of hospitalisation stay (15 vs 32 days). Conclusion: Our cohort includes a group of children with severe, complex and neurodegenerative IMD. They need multiple medications for symptoms control, are highly dependent on medical devices and consume significant healthcare resources. Communication impairment adds complexity being a major barrier to symptom assessment. PPCT referral allowed home support, anticipated care plans development with end of life and bereavement support, as well as a tendency towards a reduction in EDA. These findings reinforce the need for holistic approach to identify and address the PPC needs of children with IMD.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.2174/0118715303278702231019093844" target="_blank" rel="noreferrer noopener">10.2174/0118715303278702231019093844</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
Bereavement Support
Cancelinha C
Child
Cohort Analysis
communication disorder
Diogo L
drug combination
Emergency Ward
emotional support
Endocrine, Metabolic and Immune Disorders - Drug Targets
enteric feeding
February List 2024
Female
Ferreira S
Follow Up
Grilo E
Home Care
Hospital Admission
Hospitalization
Human
Intensive Care
Male
medical device
Metabolic Disorder
motor dysfunction
Neurologic Disease
Nogueira A
Noninvasive Ventilation
Palliative Therapy
Patient Referral
Pereira MJ
Place Of Death
respiratory equipment
Retrospective Study
School Child
Symptom Assessment
-
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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2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1007/s12094-023-03301-7" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s12094-023-03301-7</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Palliative care for children with central nervous system tumors: results of a Spanish multicenter study
Publisher
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Clinical and Translational Oncology
Date
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2023
Subject
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Central Nervous System; child; Palliative Care; childhood cancer; article; controlled study; female; human; major clinical study; male; retrospective study; preschool child; palliative therapy; medulloblastoma; cancer patient; school child; multicenter study; surgery; communication disorder; motor dysfunction; opiate; sedation; central nervous system tumor; place of death; hospital mortality; dexamethasone; antiemetic agent; pontine glioma; asthenia; Central Nervous System Neoplasms
Creator
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Perez-Torres LM; Navarro-Marchena L; de Noriega I; Morey OM; Solano-Paez P; Rubio PE; Garrido CC; Garcia AM; Tallon GM; Huidobro LB; Portugal RR; Lopez IB; Lassaletta A; Morgenstern IA; Cruz MO; Valero AL; Llort SA; Gros SL; Marquez VC; Moreno L; Quiroga-Cantero E
Description
An account of the resource
Background: Brain tumors represent the most common cause of cancer-related death in children. Few studies concerning the palliative phase in children with brain tumors are available. Objective(s): (i) To describe the palliative phase in children with brain tumors; (ii) to determine whether the use of palliative sedation (PS) depends on the place of death, the age of the patient, or if they received specific palliative care (PC). Method(s): Retrospective multicenter study between 2010 and 2021, including children from one month to 18 years, who had died of a brain tumor. Result(s): 228 patients (59.2% male) from 10 Spanish institutions were included. Median age at diagnosis was 5 years (IQR 2-9) and median age at death was 7 years (IQR 4-11). The most frequent tumors were medulloblastoma (25.4%) and diffuse intrinsic pontine glioma (DIPG) (24.1%). Median number of antineoplastic regimens were 2 (range 0-5 regimens). During palliative phase, 52.2% of the patients were attended by PC teams, while 47.8% were cared exclusively by pediatric oncology teams. Most common concerns included motor deficit (93.4%) and asthenia (87.5%) and communication disorders (89.8%). Most frequently prescribed supportive drugs were antiemetics (83.6%), opioids (81.6%), and dexamethasone (78.5%). PS was administered to 48.7% patients. Most of them died in the hospital (85.6%), while patients who died at home required PS less frequently (14.4%) (p =.01). Conclusion(s): Children dying from CNS tumors have specific needs during palliative phase. The optimal indication of PS depended on the center experience although, in our series, it was also influenced by the place of death.Copyright © 2023, The Author(s), under exclusive licence to Federacion de Sociedades Espanolas de Oncologia (FESEO).
Identifier
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<a href="http://doi.org/10.1007/s12094-023-03301-7" target="_blank" rel="noreferrer noopener">10.1007/s12094-023-03301-7</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE3 - Oncology
antiemetic agent
Article
asthenia
Cancer Patient
Central Nervous System
Central Nervous System Neoplasms
Central Nervous System Tumor
Child
Childhood Cancer
Clinical and Translational Oncology
communication disorder
Controlled Study
Cruz MO
de Noriega Í
dexamethasone
Female
Garcia AM
Garrido CC
Gros SL
Hospital Mortality
Huidobro LB
Human
Lassaletta A
Llort SA
Lopez IB
Major Clinical Study
Male
Marquez VC
Medulloblastoma
Moreno L
Morey OM
Morgenstern IA
motor dysfunction
Multicenter Study
Navarro-Marchena L
Opiate
Palliative Care
Palliative Therapy
Perez-Torres LM
Place Of Death
pontine glioma
Portugal RR
Preschool Child
Quiroga-Cantero E
Retrospective Study
Rubio PE
School Child
Sedation
Solano-Paez P
Surgery
Tallon GM
Valero AL
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1002/ajmg.a.36573" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ajmg.a.36573</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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Autism traits in children and adolescents with Cornelia de Lange syndrome
Publisher
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American Journal of Medical Genetics Part A
Date
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2014
Subject
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Communication; adolescent; Autism; emotion; age; verbal communication; communication disorder; priority journal; interpersonal communication; skill; intellectual impairment; human; article; child; female; male; adult; diagnosis; clinical article; daily life activity; disease severity; autism; Cornelia de Lange syndrome; phenotype; compulsion; language; stereotypy; adaptive behavior; socialization; Aberrant Behavior Checklist; behavior disorder; Behavioral phenotype; checklist; Childhood Autism Rating Scale; de Lange syndrome; hyperactivity; lethargy; limb; maladjustment; psychological rating scale; rating scale; Repetitive behaviors; rigidity; social cognition; Social cognition; Vineland Adaptive Behaviors Scales; behavioral problems; De Lange syndrome; trajectory; characteristics; irritability
Creator
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Srivastava S; Landy-Schmitt C; Clark B; Kline A D; Specht M; Grados M A
Description
An account of the resource
Cornelia de Lange syndrome (CdLS) is a cohesinopathy causing delayed growth and limb deficits. Individuals with CdLS have mild to profound intellectual disability and autistic features. This study characterizes the behavioral phenotype of children with CdLS, focusing on autistic features, maladaptive behaviors, and impact of age. Children with CdLS (5-18 years) were administered normed instruments to characterize autism features (Childhood Autism Rating Scale, CARS), maladaptive behaviors (Aberrant Behavior Checklist), and adaptive skills (Vineland Adaptive Behaviors Scales). CdLS features and severity were rated with Diagnostic Criteria for CdLS. Forty-one children with CdLS (23 females, 18 males) were classified as having "no autism" (n=7; 17.1%), "mild autism" (n=17; 41.4%), and "severe autism" (n=17; 41.4%), using CARS scores. Characteristic items were abnormal emotional response, stereotypies, odd object use, rigidity, lack of verbal communication, and low intellectual functioning. Verbal communication deficits and repetitive behaviors were higher compared to sensory, social cognition, and behavior abnormalities (P<0.0001). Maladaptive behaviors associated with autism traits were stereotypies (P=0.003), hyperactivity (P=0.01), and lethargy (P=0.03). Activities of daily living were significantly affected; socialization adaptive skills were a relative strength. However, with advancing age, both socialization (P<0.0001) and communication (P=0.001) domains declined significantly. CdLS is characterized by autistic features, notably excessive repetitive behaviors and expressive language deficits. While other adaptive skills are impacted, socialization adaptive skills are less affected. Advancing age can worsen communication and socialization deficits relative to neurotypical peers. © 2014 Wiley Periodicals, Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ajmg.a.36573" target="_blank" rel="noreferrer noopener">10.1002/ajmg.a.36573</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).
2014
Aberrant Behavior Checklist
adaptive behavior
Adolescent
Adult
Age
American Journal of Medical Genetics Part A
Article
Autism
behavior disorder
Behavioral phenotype
behavioral problems
characteristics
Checklist
Child
Childhood Autism Rating Scale
Clark B
Clinical Article
Communication
communication disorder
compulsion
Cornelia de Lange syndrome
daily life activity
De Lange syndrome
Diagnosis
Disease Severity
Emotion
Female
Grados M A
Human
hyperactivity
Intellectual Impairment
Interpersonal Communication
Irritability
Kline A D
Landy-Schmitt C
Language
lethargy
limb
maladjustment
Male
Phenotype
Priority Journal
psychological rating scale
Rating Scale
Repetitive behaviors
rigidity
Skill
social cognition
Socialization
Specht M
Srivastava S
stereotypy
Trajectory
Verbal Communication
Vineland Adaptive Behaviors Scales