1
40
29
-
Text
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Citation List Month
March 2017 List
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Title
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A Prospective Study On The Characteristics And Subjects Of Pediatric Palliative Care Case Management Provided By A Hospital Based Palliative Care Team
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Bmc 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
Case Management; Hospital; Palliative Therapy; Prospective Study; Child; Clergy; Controlled Study; Human; Major Clinical Study; Nurse; Psychologist; Questionnaire; Social Worker
Creator
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Jagt Van Kampen CT; Kars MC; Colenbrander DA; Bosman DK; Grootenhuis MA; Caron HN; Schouten-Van Meeteren AYN
Description
An account of the resource
Background: Case management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different disciplines, and times of usage of a pediatric palliative care case management program compared for patients with malignant disease (MD) and non-malignant disease (NMD). Methods: A three-month prospective study, with questionnaires filled in by members of a pediatric palliative care team (PPCT) for each contact with parents. Results: Four hundred fifty-five contacts took place with parents of 70 patients (27MD, 43NMD). Sixty-two percent of all contacts were with the specialized nurse. The child life specialists, psychologist and social worker were also regularly consulted, the chaplain was not consulted. Ninety-five percent of all contacts took place between 8 am and 6 pm during weekdays, a limited number between 6 pm and 9 pm. Twenty-five percent of all contacts were proactively initiated by the PPCT, 25 % were initiated by parents. In these care characteristics, no differences were seen for MD and NMD patients. Psychosocial topics were addressed most frequently. MD patients consulted the PPCT more often about school and NMD patients about socio-economic issues. Conclusions: All different disciplines of the PPCT were regularly consulted, except for the chaplain. With an easy accessible team with a highly pro-active approach, availability from 8 am to 9 pm seems sufficient to accommodate patient's and parent's needs. More anticipation seems required for socio-economic topics. This insight in pediatric palliative case management can provide guidance in the development of a new PPCT. Copyright © 2016 The Author(s).
Identifier
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10.1186/s12904-016-0166-8
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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
BMC Palliative Care
Bosman DK
Caron HN
Case Management
Child
Clergy
Colenbrander DA
Controlled Study
Grootenhuis MA
Hospital
Human
Jagt Van Kampen CT
Kars MC
Major Clinical Study
March 2017 List
Nurse
Palliative Therapy
Prospective Study
Psychologist
Questionnaire
Schouten-Van Meeteren AYN
Social Worker
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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November 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537862.99545.8f" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537862.99545.8f</a>
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Title
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Changing times-PICU and palliative care
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Palliative therapy;Adult;amber;awareness;conference abstract;controlled study;Education;Female;Human;Male;Multidisciplinary team;oncology;patient information;prospective study;staff;work
Creator
An entity primarily responsible for making the resource
Subramanian G;Kauffmann L
Description
An account of the resource
Aims & Objectives: To identify patients admitted to PICU who might benefit from palliative care using the Spectrum of Children's Palliative Care Needs. Methods Prospective study between July 2016-December2017. Cases admitted to the PICU were assessed on the spectrum for palliative care needs every Wednesday using the surprise question: Would you be surprised if the child was still alive in the next few days to weeks (RED), would you be surprised if the child died in the next months or years (AMBER), would you be surprised if the child died of their condition in childhood (YELLOW), would you be surprised if the child died early of this condition but lived until adulthood (GREEN). Acute admissions (<10days admission with no previous history), Oncology patients, and those greater than 16 years were excluded. Up to date patient information was discussed in a multi-disciplinary team setting. Results Data from 53 MDTs over 78 weeks was analysed in study period with at least 2 meetings every month. 58% of the patients admitted to PICU would have benefitted from palliative care with 39% of these being in the amber group. Conclusions There is a large population of patients admitted to PICU who would benefit from palliative care. Staff awareness, education and support to care for this complex group of patients through changes in recruitment strategies and job descriptions, staff psychological support, in house palliative care consultant availability and development of family liaison roles is essential.
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<a href="http://doi.org/10.1097/01.pcc.0000537862.99545.8f" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537862.99545.8f</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
Adult
amber
Awareness
conference abstract
Controlled Study
Education
Female
Human
Kauffmann L
Male
Multidisciplinary team
November 2018 List
Oncology
Palliative Therapy
patient information
Pediatric Critical Care Medicine
Prospective Study
Staff
Subramanian G
Work
-
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/10.1186/s12904-024-01394-7" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-024-01394-7</a>
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Title
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Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
child; Adolescent; Questionnaires; article; controlled study; female; human; male; palliative therapy; clinical article; caregiver; school child; human experiment; prospective study; adolescent; wakefulness; therapy; decision making; drug therapy; chronic disease; questionnaire; special situation for pharmacovigilance; actimetry; diagnostic procedure; protocol; sleep; actigraph; sleep efficiency; sleep time; stage 1 sleep; wake after sleep onset
Creator
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Kubek LA; Claus B; Zernikow B; Wager J
Description
An account of the resource
Background: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other measures of sleep diagnostics. Methods: In this monocentric prospective study N = 26 children and adolescents with life-limiting conditions treated on a pediatric palliative care unit were assessed. For three consecutive nights they wore an actigraph; the 24-hours sleep protocol documented by nurses and the Sleep Screening for Children and Adolescents with Complex Chronic Conditions (SCAC) answered by parents were analyzed. Patient characteristics and the parameters sleep onset, sleep offset, wake after sleep onset (WASO), number of wake phases, total sleep time (TST) and sleep efficiency (SE) were descriptively examined. Percentage bend correlations evaluated the three measures' concordance. Results: Descriptively, and except for the number of waking episodes, the different measures' estimations were comparable. Significant correlations existed between actigraphy and the sleep protocol for sleep onset (r = 0.83, p = < 0.001) and sleep offset (r = 0.89, p = < 0.001), between actigraphy and SCAC for SE (r = 0.59, p = 0.02). Conclusion: Agreement of actigraphy with the focused sleep measures seems to be basically given but to varying degrees depending on the considered parameters.
Identifier
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<a href="http://doi.org/10.1186/s12904-024-01394-7" target="_blank" rel="noreferrer noopener">10.1186/s12904-024-01394-7</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
actigraph
actimetry
Adolescent
April List 2024
Article
BMC Palliative Care
Caregiver
Child
Chronic Disease
Claus B
Clinical Article
Controlled Study
Decision Making
diagnostic procedure
Drug Therapy
Female
Human
Human Experiment
Kubek LA
Male
Palliative Therapy
Prospective Study
protocol
Questionnaire
Questionnaires
School Child
Sleep
sleep efficiency
sleep time
special situation for pharmacovigilance
stage 1 sleep
Therapy
Wager J
wake after sleep onset
Wakefulness
Zernikow B
-
Dublin Core
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Title
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February 2021 List
Text
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Citation List Month
February 2021 List
URL Address
<a href="http://doi.org/10.1177/0269216320975626" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216320975626</a>
Dublin Core
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Title
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Development and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairmentis-A multicenter prospective 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
pediatric; prospective study; multicenter study; outcome measure; Palliative care; factor analysis; patient-centered outcome research; questionnaire design
Creator
An entity primarily responsible for making the resource
Pelke S; Wager J; Claus BB; Zernikow B; Reuther M
Description
An account of the resource
BACKGROUND: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments. AIM: The aim of this study was to develop and validate a family-centered multidimensional outcome measure for pediatric palliative care patients with severe neurological impairment that encompasses the entire unit of care. DESIGN: Based on results of a qualitative study, the questionnaire was developed by consensus-based generation of questions. It was validated in a multicenter prospective study employing exploratory and confirmatory factor analyses as well as reliability and item analyses. SETTING: A total of 11 pediatric palliative care teams across Germany aided in the recruitment of study participants. Questionnaires were answered by 149 parents of children with severe neurological impairment and 157 professional caregivers. RESULTS: The exploratory factor analysis of parent data revealed a 6-factor structure of the questionnaire representing: symptoms, the child's social participation, normalcy, social support, coping with the disease and caregiver's competencies. This structure was verified by a confirmatory factor analysis of professional caregiver data. Five separate items regarding siblings, partners, and further symptoms not applicable for all patients were added to ensure full multidimensionality. CONCLUSION: A validated outcome tool for severely neurologically impaired pediatric palliative care patients, the FACETS-OF-PPC, now exists. Due to its concise length and appropriate psychometric properties, it is well suited for clinical application.
Identifier
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<a href="http://doi.org/10.1177/0269216320975626" target="_blank" rel="noreferrer noopener">10.1177/0269216320975626</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Claus BB
Factor Analysis
February 2021 List
Multicenter Study
outcome measure
Palliative Care
Palliative Medicine
patient-centered outcome research
Pediatric
Pelke S
Prospective Study
questionnaire design
Reuther M
Wager J
Zernikow B
-
Dublin Core
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Title
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November 2019 List
Text
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November 2019 List
URL Address
<a href="http://doi.org/10.1038/s41372-019-0490-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41372-019-0490-y</a>
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Title
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Early palliative care reduces stress in parents of neonates with congenital heart disease: validation of the "Baby, Attachment, Comfort Interventions"
Publisher
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Journal of perinatology : official journal of the California Perinatal Association.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
comfort; congenital heart disease; mental stress; palliative therapy; anxiety; article; child parent relation; cohort analysis; controlled study; emotional attachment; female; health care quality; human; infant; male; newborn; prospective study
Creator
An entity primarily responsible for making the resource
Callahan K; Steinwurtzel R; Brumarie L; Schechter S; Parravicini E
Description
An account of the resource
OBJECTIVE: To test our hypothesis that an innovative method of early palliative care called "Baby, Attachment, Comfort Interventions" reduces psychological distress in parents of neonates with congenital heart disease. STUDY DESIGN: Prospective cohort study of parents of neonates with congenital heart disease. Distress was evaluated at admission and discharge using Neonatal Unit Parental Stressor Scale and Depression Anxiety Stress Index-21. Control parents received standard of care. Intervention parents received interdisciplinary interventions aimed at improving neonatal comfort and parenting experience.
Identifier
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<a href="http://doi.org/10.1038/s41372-019-0490-y" target="_blank" rel="noreferrer noopener">10.1038/s41372-019-0490-y</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
anxiety
Article
Brumarie L
Callahan K
Child Parent Relation
Cohort Analysis
Comfort
Congenital Heart Disease
Controlled Study
emotional attachment
Female
Health Care Quality
Human
Infant
Journal of perinatology : official journal of the California Perinatal Association.
Male
Mental Stress
Newborn
November 2019 List
Palliative Therapy
Parravicini E
Prospective Study
Schechter S
Steinwurtzel R
-
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
2020 Developing World List
Text
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Citation List Month
Developing World 2020 List
URL Address
<a href="http://doi.org/10.1016/s2214-109x(20)30345-4" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/s2214-109x(20)30345-4</a>
Dublin Core
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Title
A name given to the resource
Effect of the COVID-19 pandemic response on intrapartum care, stillbirth, and neonatal mortality outcomes in Nepal: a prospective observational study
Publisher
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Lancet Global Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
stillbirth; prospective study; observational study; COVID-19; Coronavirus 19; Nepal; intrapartum care; neonatal mortality; prospective observational study
Creator
An entity primarily responsible for making the resource
Kc A; Gurung R; Kinney M V; Sunny A K; Moinuddin M; Basnet O; Paudel P; Bhattarai P; Subedi K; Shrestha M P; Lawn J E; Målqvist M
Description
An account of the resource
BACKGROUND: The COVID-19 pandemic response is affecting maternal and neonatal health services all over the world. We aimed to assess the number of institutional births, their outcomes (institutional stillbirth and neonatal mortality rate), and quality of intrapartum care before and during the national COVID-19 lockdown in Nepal. METHODS: In this prospective observational study, we collected participant-level data for pregnant women enrolled in the SUSTAIN and REFINE studies between Jan 1 and May 30, 2020, from nine hospitals in Nepal. This period included 12·5 weeks before the national lockdown and 9·5 weeks during the lockdown. Women were eligible for inclusion if they had a gestational age of 22 weeks or more, a fetal heart sound at time of admission, and consented to inclusion. Women who had multiple births and their babies were excluded. We collected information on demographic and obstetric characteristics via extraction from case notes and health worker performance via direct observation by independent clinical researchers. We used regression analyses to assess changes in the number of institutional births, quality of care, and mortality before lockdown versus during lockdown. FINDINGS: Of 22 907 eligible women, 21 763 women were enrolled and 20 354 gave birth, and health worker performance was recorded for 10 543 births. From the beginning to the end of the study period, the mean weekly number of births decreased from 1261·1 births (SE 66·1) before lockdown to 651·4 births (49·9) during lockdown-a reduction of 52·4%. The institutional stillbirth rate increased from 14 per 1000 total births before lockdown to 21 per 1000 total births during lockdown (p=0·0002), and institutional neonatal mortality increased from 13 per 1000 livebirths to 40 per 1000 livebirths (p=0·0022). In terms of quality of care, intrapartum fetal heart rate monitoring decreased by 13·4% (-15·4 to -11·3; p<0·0001), and breastfeeding within 1 h of birth decreased by 3·5% (-4·6 to -2·6; p=0·0032). The immediate newborn care practice of placing the baby skin-to-skin with their mother increased by 13·2% (12·1 to 14·5; p<0·0001), and health workers' hand hygiene practices during childbirth increased by 12·9% (11·8 to 13·9) during lockdown (p<0·0001). INTERPRETATION: Institutional childbirth reduced by more than half during lockdown, with increases in institutional stillbirth rate and neonatal mortality, and decreases in quality of care. Some behaviours improved, notably hand hygiene and keeping the baby skin-to-skin with their mother. An urgent need exists to protect access to high quality intrapartum care and prevent excess deaths for the most vulnerable health system users during this pandemic period. FUNDING: Grand Challenges Canada.
Identifier
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<a href="http://doi.org/10.1016/s2214-109x(20)30345-4" target="_blank" rel="noreferrer noopener">10.1016/s2214-109x(20)30345-4</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Basnet O
Bhattarai P
Coronavirus 19
COVID-19
Developing World 2020 List
Gurung R
intrapartum care
Kc A
Kinney M V
Lancet Global Health
Lawn J E
Målqvist M
Moinuddin M
Neonatal mortality
Nepal
Observational Study
Paudel P
prospective observational study
Prospective Study
Shrestha M P
Stillbirth
Subedi K
Sunny A 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
2018 Developing World 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
Developing World 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537866.22348.8a" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1097/01.pcc.0000537866.22348.8a</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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Epidemiology of death in paediatric intensive care units (PICUS) in a developing country
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
cause of death; decision making; organ donor; major clinical study; artificial ventilation; life sustaining treatment; mortality rate; pediatric intensive care unit; prospective study; conference abstract; human; child; female; male; controlled study; palliative therapy; total quality management; resuscitation; length of stay; drug withdrawal; brain death; developing country; inotropic agent; liver failure; secondary analysis
Creator
An entity primarily responsible for making the resource
Zainal Abidin AS; Lum LC; Gan CS; Tang SF; Chuah S L; Teh K H; Jalil R; Ho AMM; Isa MR
Identifier
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<a href="http://doi.org/10.1097/01.pcc.0000537866.22348.8a" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537866.22348.8a</a>
2018
Artificial Ventilation
Brain Death
Cause Of Death
Child
Chuah S L
conference abstract
Controlled Study
Decision Making
developing country
Developing World 2018 List
Drug Withdrawal
Female
Gan CS
Ho AMM
Human
inotropic agent
Isa MR
Jalil R
Length Of Stay
Life Sustaining Treatment
liver failure
Lum LC
Major Clinical Study
Male
Mortality Rate
organ donor
Palliative Therapy
Pediatric Critical Care Medicine
Pediatric Intensive Care Unit
Prospective Study
Resuscitation
Secondary Analysis
Tang SF
Teh K H
Total Quality Management
Zainal Abidin AS
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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March 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
March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.077" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.077</a>
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Title
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Grief and Bereavement Support for Families and Healthcare Professionals as Part of Integrated Care in Pediatric/Neonatal Intensive Care Units around the World (TH340A)
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
bereavement support; child; conference abstract; controlled study; convenience sample; demography; female; financial management; gender; health care personnel; high income country; human; male; neonatal intensive care unit; newborn; newborn death; palliative therapy; patient coding; pediatric intensive care unit; perception; prospective study; questionnaire; statistical significance; World Bank
Creator
An entity primarily responsible for making the resource
Grunauer M; Bustamante G; Zambrano K
Description
An account of the resource
Objectives: * Recognize how PICUs/NICUs implement GBS IPPC recommendations. * Describe how PICUs/NICUs' resource influence their GBS care provision as related to IPPC recommendations. Original Research Background: Grief and bereavement support (GBS) is important for the wellbeing and functioning of patients, families, and healthcare professionals (HCPs) and is part of the Integrated Model of Care (IMOC) in which ICU personnel address critical and palliative care (PC) needs concurrently. The Initiative for Pediatric Palliative Care (IPPC) guidelines can build PC capacity. Identifying existing PC resources/competencies amongst potential IPPC adopters maximizes implementation effectiveness. Research Objectives: We assessed if PICUs/NICUs implement GBS IPPC recommendations and if units' resources shape care provision.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.077" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.077</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Bereavement Support
Bustamante G
Child
conference abstract
Controlled Study
Convenience Sample
Demography
Female
financial management
Gender
Grunauer M
Health Care Personnel
high income country
Human
Journal of Pain and Symptom Management
Male
March 2020 List
Neonatal Intensive Care Unit
Newborn
Newborn Death
Palliative Therapy
patient coding
Pediatric Intensive Care Unit
Perception
Prospective Study
Questionnaire
Statistical Significance
World Bank
Zambrano K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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/10.1089/jpm.2023.0292" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0292</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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Implementation of an Innovative Palliative Care Screening Tool in the Pediatric Intensive Care Unit: A Pilot Study
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; controlled study; female; human; major clinical study; male; chronic disease; palliative therapy; comorbidity; pilot study; pediatric intensive care unit; congenital malformation; intensive care; prospective study; tertiary health care
Creator
An entity primarily responsible for making the resource
Hodge CH; Kerris EW; Freeman MC; Eckman ST; Deeter DM; Even KM
Description
An account of the resource
Background: Pediatric palliative care (PPC) can improve the quality of care provided to critically ill children with a high risk of morbidity and mortality. Early identification of patients admitted to the pediatric intensive care unit (PICU) who may benefit from PPC involvement is essential. Objectives: To create a brief screening tool, the Pediatric Intensive Care-Pediatric Palliative Care Screen, identifying PICU patients most likely to benefit from PPC involvement and to assess if weekly screening with this screening tool increases the number of PPC consults placed in the PICU. Methods: This is a prospective investigational single-center study in a 24-bed PICU at a U.S. tertiary care children's hospital. Weekly screening was completed by two clinicians for a six-month period between April and October 2022. Results: A total of 162 screens were completed on 124 individual patients; 47 screens were positive (29%), and 115 were negative (71%). Fourteen new PPC consults were placed from the PICU with one PPC consult for every 36.7 compared with one PPC for every 41.4 admissions the previous year. Of the positive screens, 68% had two or more comorbidities at the time of PICU admission versus 26% of negative screens (p < 0.001). Technology dependence (57% vs. 5%, p < 0.001) and presence of congenital defects (26% vs. 10%, p = 0.013) were significantly more common among positive screens. Conclusions: Weekly screening with a short, 7-question screening tool can identify PICU patients most likely to benefit from a PPC consult. Patients with chronic illnesses and baseline comorbidities are most likely to screen positive.
Identifier
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<a href="http://doi.org/10.1089/jpm.2023.0292" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0292</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
Child
Chronic Disease
Comorbidity
Congenital Malformation
Controlled Study
Deeter DM
Eckman ST
Even KM
February List 2024
Female
Freeman MC
Hodge CH
Human
Intensive Care
Journal of Palliative Medicine
Kerris EW
Major Clinical Study
Male
Palliative Therapy
Pediatric Intensive Care Unit
Pilot Study
Prospective Study
tertiary health care
-
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Title
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May 2020 List
Text
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May 2020 List
URL Address
<a href="http://doi.org/10.1177/1049909120912674" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909120912674</a>
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Title
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Inter-Rater Reliability of the Phase of Illness Tool in Pediatric Palliative Care
Publisher
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The American journal of hospice & palliative care.
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
adult; article; child; cohort analysis; controlled study; feasibility study; female; human; interrater reliability; major clinical study; male; Palliative therapy; pediatric patient; prospective study; reproducibility; uncertainty
Creator
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Burke K; Coombes L H; Petruckevitch A; Anderson A K
Description
An account of the resource
BACKGROUND: Phase of Illness is used to describe the stages of a patient's illness in the palliative care setting. Categorization is based on individual needs, family circumstances, and the adequacy of a care plan. Substantial (κ = .67) and moderate (κ = .52) inter-rater reliability is demonstrated when categorizing adults; however, there is a lack of similar studies in pediatrics. OBJECTIVE: To test the inter-rater reliability of health-care professionals when assigning pediatric palliative care patients to a Phase of Illness. Furthermore, to obtain user views on phase definitions, ease of assignment, feasibility and acceptability of use. METHOD: A prospective cohort study in which up to 9 health-care professionals' independently allocated 80 pediatric patients to a Phase of Illness and reported on their experiences. This study took place between June and November 2017. RESULTS: Professionals achieved a moderate level of agreement (κ = 0.50). Kappa values per phase were as follows: stable = 0.63 (substantial), unstable = 0.26 (fair), deteriorating = 0.45 (moderate), and dying = 0.43 (moderate). For the majority of allocations, professionals report that the phase definitions described patients very well (76.1%), and they found it easy to assign patients (73.5%). However, the unstable phase caused the most uncertainty. CONCLUSION: The results of this study suggest Phase of Illness is a moderately reliable, acceptable, and feasible tool for use in pediatric palliative care. Current results are similar to those found in some adult studies. However, in a quarter of cases, users report some uncertainty in the application of the tool, and further study is warranted to explore whether suggested refinements improve its psychometric properties.
Identifier
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<a href="http://doi.org/10.1177/1049909120912674" target="_blank" rel="noreferrer noopener">10.1177/1049909120912674</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adult
Anderson A K
Article
Burke K
Child
Cohort Analysis
Controlled Study
Coombes L H
Feasibility Study
Female
Human
interrater reliability
Major Clinical Study
Male
May 2020 List
Palliative Therapy
pediatric patient
Petruckevitch A
Prospective Study
Reproducibility
The American journal of hospice & palliative care.
Uncertainty
-
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Title
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November 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1038/s41372-018-0102-2" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41372-018-0102-2</a>
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Title
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Opinions of Israeli neonatologists about life and death decisions in neonates
Publisher
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Journal of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Israeli;medical decision making;neonatologist;physician attitude;terminal care;adult;age;article;demography;disabled person;disease severity;dying;ethnicity;family attitude;Female;health care cost;human;Israel;Male;medical ethics;medicolegal aspect;middle aged;neonatal intensive care unit;normal human;personal experience;prospective study;psychological well being;questionnaire;religion;sex difference;simulation
Creator
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Kasirer MY;Mimouni FB;Bin-nun A;Schimmel MS
Description
An account of the resource
Background:: In 2005, the Israeli parliament passed the "law of dying patients" legalizing life and death decisions (do not resuscitate) in patients with life expectancy less than 6 months. Objective:: To determine whether ethnic and religious backgrounds (both religion and religiosity) influence neonatologists' attitudes in simulated clinical situations and opinions about the new law. Design/Methods:: Prospective design, using standard questionnaire sent to all 155 board-certified practising Israeli Neonatologists. The questionnaire sought demographic and descriptive data, personal opinions regarding four simulated cases, and opinions about five statements regarding variables that may influence decision-making. Statistical analyses were by stepwise backward regression analysis, linear regression, and Kruskal-Wallis tests, wherever indicated. Results:: Sixty-nine percent of the neonatologists replied, representing 27 NICUs out of the 29 NICUs in Israel. Most neonatologists would respect the wish of the family as long as it would be within the limits of the law or their personal beliefs. In stepwise regression analysis, religion, religiosity, age, gender, experience, or country of training did not influence significantly the neonatologists' opinions or their decisions in simulated practice. Most neonatologists felt that Ethical Committees had no role in NICUs and were seldom consulted. Most felt that likelihood of severe handicap was critical in decision-making. Issues related to treatment cost of a handicapped or dying infant, as well as impact of a handicapped infant on family's well-being, were not deemed critical. Conclusion:: Israeli neonatologists appear to be a relatively homogeneous group in end-of-life decisions, regardless of their ethnic, religious, or religiosity background.
Identifier
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<a href="http://doi.org/10.1038/s41372-018-0102-2" target="_blank" rel="noreferrer noopener">10.1038/s41372-018-0102-2</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
Adult
Age
Article
Bin-nun A
Demography
disabled person
Disease Severity
Dying
Ethnicity
Family Attitude
Female
Health Care Cost
Human
Israel
Israeli
Journal Of Perinatology
Kasirer MY
Male
Medical Decision Making
Medical Ethics
medicolegal aspect
Middle Aged
Mimouni FB
Neonatal Intensive Care Unit
Neonatologist
Normal Human
November 2018 List
Personal Experience
Physician Attitude
Prospective Study
psychological well being
Questionnaire
Religion
Schimmel MS
sex difference
Simulation
Terminal Care
-
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Title
A name given to the resource
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.ijporl.2015.11.009" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ijporl.2015.11.009</a>
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Title
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Otorhinolaryngological, Audiovestibular and swallowing manifestations of patients with Niemann-Pick disease Type C
Publisher
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International Journal of Pediatric Otorhinolaryngology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
adolescent; hearing; dysphagia; priority journal; school child; preschool child; prospective study; human; article; child; female; male; controlled study; clinical article; auditory response; Balance disorders; body equilibrium; endoscopy; Flexible endoscopy; hearing impairment; Hearing problems; Niemann Pick disease/di [Diagnosis]; Niemann-Pick disease; otorhinolaryngology; pure tone audiometry; stabilography; swallowing; Swallowing disorders; vestibular system; feeding difficulties; tone and motor problems; NPC; penetration; aspiration scale; trajectory; characteristics; postural imbalance; dysphagia
Creator
An entity primarily responsible for making the resource
Senirli R T; Kuscu O; Akyol U; Topcu M; Yigit O; Aksoy S; Demir N
Description
An account of the resource
Objectives: The aim of this study is to evaluate audiovestibular and swallowing impairment of patients with NPC. Methods: Audiovestibular and swallowing evaluation were performed on patients with Niemann-Pick disease type C (NPC) at Hacettepe University between 20013 and 2015 prospectively. Pure-tone audiometry (PTA), Auditory Brain stem response (ABR), Flexible endoscopic evaluation of swallowing (FEES) test and posturography were done. Hearing, swallowing and balance states were measured. Results: There were 16 patients (5 male and 11 female, with a median age of 6.5 years old). The most common ABR abnormalities observed were absent waves I and III (%70 absent I waves, %43.75 absent III waves). Twelve of sixteen patients (%75) had an ABR abnormality in at least one ear, of these, four patients had normal hearing and three of them had periferal hearing loss. 12 (75%) patients had complaint of postural imbalance. 11(69%) of patients had peripheral and one (6%) patient had central impairment. Nine of sixteen patients (56.25%) show some degree of dysphagia (either penetration or aspiration). Two patients (12.5%) showed aspiration both liquid and viscous nutrition. Three patients (18.75%) showed aspiration primarily in liquids and two of them had penetration with viscous nutrition. Three patients (18.75%) had penetration with no aspiration neither liquid nor viscous nutrition (PEN-ASP score was 3, 3, 5, respectively). Conclusion: There is no curative treatment for this devastating and fatal disorder and hearing impairment, balance and swallowing disorders can be seen especially late onset form of disease.
Identifier
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<a href="http://doi.org/10.1016/j.ijporl.2015.11.009" target="_blank" rel="noreferrer noopener">10.1016/j.ijporl.2015.11.009</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adolescent
Aksoy S
Akyol U
Article
aspiration scale
auditory response
Balance disorders
body equilibrium
characteristics
Child
Clinical Article
Controlled Study
Demir N
Dysphagia
Endoscopy
feeding difficulties
Female
Flexible endoscopy
hearing
hearing impairment
Hearing problems
Human
International Journal of Pediatric Otorhinolaryngology
Kuscu O
Male
Niemann Pick disease/di [Diagnosis]
Niemann-Pick Disease
NPC
Otorhinolaryngology
penetration
postural imbalance
Preschool Child
Priority Journal
Prospective Study
pure tone audiometry
School Child
Senirli R T
stabilography
Swallowing
Swallowing disorders
tone and motor problems
Topcu M
Trajectory
vestibular system
Yigit O
-
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 2017 List
URL Address
<a href="http://doi.org/10.1016/j.ijrobp.2017.06.208" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ijrobp.2017.06.208</a>
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Title
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Palliative radiation therapy for pediatric patients: Parental perceptions
Publisher
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International Journal Of Radiation Oncology Biology Physics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Perception; Analgesia; Brain; Breathing; Cancer Staging; Child; Comfort; Disease Course; Expectation; Female; Human; Institutional Review; Male; Palliative Therapy; Prevention; Prospective Study; Quality Of Life; Questionnaire; Radiotherapy; Spinal Cord Compression; Statistics
Creator
An entity primarily responsible for making the resource
Lee BKY; Apkon D; Wolfe J; Marcus KJ
Description
An account of the resource
Purpose/Objective(s): Palliative radiation therapy (pRT) for pediatric cancer patients is often used to treat pain, neurologic symptoms, and other conditions from progressive cancer that affects quality of life. However, though the doses used are generally lower than those used for curative treatment, pRT may still introduce undesirable side effects. A parent's decision to pursue additional anti-cancer therapy towards the end of their child's life may be challenging, as the perceived risk-versus-benefit ratio may be altered depending on their knowledge and expectations for the pRT. As anti-cancer directed treatment continues to be offered, the line between curing and palliation may become blurred. The goal of this study was to explore parental perceptions of pRT with regards to its purpose and expected outcome. Purpose/Objective(s): Forty-five children referred for pRT were enrolled in a prospective institutional review board-approved study. At the time of initial consultation, parents were counseled regarding the indication for pRT and the expected outcomes of treatment. At one to three months after treatment completion, a questionnaire was given to parents to assess their understanding of the role of pRT for their child. They were asked to specify the reasons for pRT as well as their expectations of the treatment outcome. Descriptive statistics were used to analyze the results of the questionnaire. Results: The main indications for pRT in this cohort were pain (44%), spinal cord compression (3%), neurologic symptoms from brain mass (18%), leptomeningeal involvement (3%), asymptomatic radiologic progression (18%), and other indications (13%). When asked about the reasons for pRT in their child, parents reported the following: pain relief (51%), addressing new disease such as radiologic progression (40%), prevention of damage to spinal cord (11%), and help with breathing (2%). 49% listed additional reasons, including control of existing tumors or prevention of pain (as opposed to pain control). When asked about their expectations for the pRT, 76% of parents marked improvement in quality of life. An equal proportion (76%) also expected prolongation of their child's life. 53% included pain relief as one of their expectations. Interestingly, 40% of parents expected the pRT to also cure their child's malignant disease. Conclusion: Radiation therapy is an important modality in palliative care for children with end-stage cancer. Improved quality of life through pRT sometimes blurs the distinction between palliative and curative intent of the treatment. In this study, we found that a large proportion of parents perceived pRT to play a curative role for their child's malignancy, despite having been informed initially that the treatment was palliative. Thus, many parents seem to derive hope and comfort from having their child continue to receive some active treatment. Studies are ongoing to determine parents' assessment of whether pRT did achieve what they had hoped for their child.
Identifier
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<a href="http://doi.org/10.1016/j.ijrobp.2017.06.208" target="_blank" rel="noreferrer">10.1016/j.ijrobp.2017.06.208</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Analgesia
Apkon D
Brain
Breathing
Cancer Staging
Child
Comfort
December 2017 List
Disease Course
Expectation
Female
Human
Institutional Review
International Journal Of Radiation Oncology Biology Physics
Lee BKY
Male
Marcus KJ
Palliative Therapy
Perception
Prevention
Prospective Study
Quality Of Life
Questionnaire
Radiotherapy
Spinal Cord Compression
Statistics
Wolfe J
-
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Title
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2019 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 2019 List
URL Address
<a href="http://doi.org/10.1002/pbc.28003" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.28003</a>
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Title
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Palliative radiotherapy for pediatric patients: Parental perceptions of indication, intent, and outcomes
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
analgesia; article; child; clinical article; comfort; controlled study; expectation; female; human; male; palliative therapy; pediatric patient; perception; prospective study; quality of life; questionnaire; radiation oncology; radiotherapy; side effect
Creator
An entity primarily responsible for making the resource
Lee B K; Boyle P J; Zaslowe-Dude C; Wolfe J; Marcus K J
Description
An account of the resource
Objectives: Palliative radiation therapy (pRT) is often used to improve quality of life for pediatric patients. Though palliative doses are generally lower than those for cure, pRT may still introduce undesirable effects. The decision to pursue additional therapy for a child may be challenging and depends on parents' knowledge and expectations. The goal of this study was to explore parental perceptions of pRT.
Identifier
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<a href="http://doi.org/10.1002/pbc.28003" target="_blank" rel="noreferrer noopener">10.1002/pbc.28003</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).
2020
Analgesia
Article
Boyle P J
Child
Clinical Article
Comfort
Controlled Study
Expectation
Female
Human
Lee B K
Male
Marcus K J
Oncology 2019 List
Palliative Therapy
Pediatric Blood and Cancer
pediatric patient
Perception
Prospective Study
Quality Of Life
Questionnaire
radiation oncology
Radiotherapy
Side Effect
Wolfe J
Zaslowe-Dude C
-
Dublin Core
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Title
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March 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
March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.323" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.323</a>
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Title
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Parent-Reported Outcomes of Prognostic Communication in Hospitalized Children with Advanced Heart Disease (S762)
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
adult; cardiology; Caucasian; child; cohort analysis; conference abstract; controlled study; conversation; decision making; expectation; female; heart single ventricle; high school; hospitalization; hospitalized child; human; infant; intubation; length of stay; major clinical study; male; married person; medical record review; mother; prognosis; prospective study; pulmonary hypertension; pulmonary vein stenosis; recall; young adult
Creator
An entity primarily responsible for making the resource
Miller M K; Morell E; Feraco A; Goldberg S; Reichman J; Sahakian L; Sleeper L; Blume E
Description
An account of the resource
Objectives: * Describe a prospective study to evaluate how parents of children with advanced heart disease (AHD) perceive communication about prognosis with their child's physicians. * Describe results from this analysis that found no correlation between length of stay of a child with advanced heart disease and parent reports of conflicting information from physicians. Original Research Background and Objectives: Communication between parents and physicians is essential to high-quality care. For families of patients with AHD, understanding prognosis is critical to decision making and is associated with less perceived suffering at end of life. This is the first study to prospectively evaluate how parents of children with AHD perceive prognostic communication with their child's physicians.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.323" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.323</a>
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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
Adult
Blume E
Cardiology
Caucasian
Child
Cohort Analysis
conference abstract
Controlled Study
Conversation
Decision Making
Expectation
Female
Feraco A
Goldberg S
heart single ventricle
high school
Hospitalization
Hospitalized Child
Human
Infant
Intubation
Journal of Pain and Symptom Management
Length Of Stay
Major Clinical Study
Male
March 2020 List
married person
Medical Record Review
Miller M K
Morell E
Mother
Prognosis
Prospective Study
pulmonary hypertension
pulmonary vein stenosis
Recall
Reichman J
Sahakian L
Sleeper L
Young Adult
-
Dublin Core
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/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/jp.2017.160</a>
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Title
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Parental assessment of comfort in newborns affected by lifelimiting conditions treated by a standardized neonatal comfort care program
Publisher
An entity responsible for making the resource available
Journal of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
life expectancy; Infant; Newborn; health survey; newborn; health care quality; self report; parental attitude; prospective study; parental behavior; newborn care; child parent relation; health program; human; female; male; adult; article; clinical article; life limiting disease; patient comfort; physical disease; fluid intake; health care delivery; infant nutrition; kangaroo care; peer review; standardization
Creator
An entity primarily responsible for making the resource
Parravicini E; Daho M; Foe G; Steinwurtzel R; Byrne M
Description
An account of the resource
Objective:To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program.Study Design:Participants were parents (n=35 families) who elected comfort care for their newborns diagnosed with life-limiting conditions. Standardized comfort measures including family/infant bonding, warmth, nutrition/hydration and pain/discomfort management were provided to all infants. Parents consented to receive a questionnaire with quantitative response options and open-ended questions.Results:Forty-two questionnaires (26 from mothers and 16 from fathers) were collected and analyzed. Most parents reported that their child was treated with respect, in a caring, peaceful and non-invasive environment. To the question 'Do you think that overall your baby received comfort' mode response was 'always'.Conclusion:Parents of infants with life-limiting conditions perceive that their babies experience comfort as a result of the care provided by the standardized Neonatal Comfort Care Program.
Identifier
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<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">10.1038/jp.2017.160</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
Adult
April 2018 List
Article
Byrne M
Child Parent Relation
Clinical Article
Daho M
Female
fluid intake
Foe G
Health Care Delivery
Health Care Quality
health program
Health Survey
Human
Infant
Infant Nutrition
Journal Of Perinatology
kangaroo care
Life Expectancy
life limiting disease
Male
Newborn
Newborn Care
Parental Attitude
parental behavior
Parravicini E
Patient Comfort
Peer Review
physical disease
Prospective Study
Self Report
standardization
Steinwurtzel R
-
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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March 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
March 2018 List
URL Address
<a href="http://doi.org/10.1097/01.ccm.0000528417.25863.42" target="_blank" rel="noreferrer">http://doi.org/10.1097/01.ccm.0000528417.25863.42</a>
Dublin Core
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Title
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Pccm fellows' palliative care knowledge and attitudes surrounding a pilot educational initiative
Publisher
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Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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palliative therapy; Child; Clinical Article; cohort analysis; comfort; communication skill; Curriculum; Death; Human; Intensive Care; legal aspect; Likert scale; maturation; prospective study; role playing; simulation; spike
Creator
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Short SR; Poynter-Wong S; Flint H
Description
An account of the resource
Learning Objectives: The importance of Palliative and End of Life Care (PC, EOL) for children in the PICU with life-limiting, chronic conditions is increasingly recognized (1). Robust PC improves outcomes by symptom score, cost, and length of life (2-4). Pediatric Critical Care fellows (PCCF) report deficiencies in PC education and knowledge (5-7). This study measured PC knowledge, attitudes, and skills of PCCF at one center assessing how maturation impacts those indices. Methods: Prospective cohort study of PCCF surrounded a series of PC workshops. Two validated adapted tools evaluated endpoints; a survey of PCCFs' comfort, knowledge and experience (8) and a Communication Assessment (CA) using SPIKES methodology (9). Graduating fellows (GF, n = 4) and a current fellow cohort (CF, n = 11) completed the survey. In a simulation workshop, faculty (n = 2) used the CA to rate fellows' communication skills (n = 15). A CF cohort (n = 11) completed the post-curriculum survey. Results: Assessed PCCF's knowledge, attitudes and skills show maturation alone inadequately instructs PC, reflecting national data (5-9). Maturation did not alter self-appraised comfort providing PC in 6 (Likert scale 1-5)(composite scores by year; 1st 3.6, 2nd 3.3; 3rd; 3.5). With training, comfort managing conflict and emotion (1st 3.2; 3rd 3), symptoms at EOL (1st 3.7; 2nd 3.6; 3rd 4.1), and legal aspects of PC (1st 3.6; 3rd 3.7) did not change. Nor, did it improve objective knowledge scores (by year; 1st 54%; 2nd 46%; 3rd 51%; GF 65% p> 0.05) or communication skills by CA (scale 0-4)(1st 2.2; 2nd 2.6; 3rd 2). PC exposure, gauged by care conferences (cc) led and recalled deaths on clinical duty (cc 1-25; M= 8.5; deaths 5-36; M 13.5), did not correlate with comfort, communication skills, or knowledge. Post-workshop, more PCCF found PC education helpful (90 v 60%) with new openness to workshops, online modules, and role-play versus didactics and observation pre-workshop. Conclusions: This study demonstrates knowledge gaps and a lack of communication skills commiserate with self-reported comfort in PC among PCCF. Maturation did not improve these endpoints. Fellows are also open to and request more PC education after exposure to a multi-modal educational intervention. Findings indicate that PCCF want and need specific curricula to affect PC knowledge and skills.
2018
Identifier
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<a href="http://doi.org/10.1097/01.ccm.0000528417.25863.42" target="_blank" rel="noreferrer">10.1097/01.ccm.0000528417.25863.42</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
Child
Clinical Article
Cohort Analysis
Comfort
Communication Skill
Critical Care Medicine
Curriculum
Death
Flint H
Human
Intensive Care
Legal Aspect
Likert scale
March 2018 List
maturation
Palliative Therapy
Poynter-Wong S
Prospective Study
Role Playing
Short SR
Simulation
Spike
-
Dublin Core
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Title
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February 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
February 2020 List
URL Address
<a href="http://doi.org/10.1186/s13613-018-0474-7" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s13613-018-0474-7</a>
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Title
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Perceptible end-of-life signs in PICU, a prospective study
Publisher
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Annals of Intensive 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
artificial ventilation; bradycardia; brain death; caregiver; cause of death; child; chronic disease; clinical article; conference abstract; cyanosis; drug withdrawal; edema; human; hypotension; male; neurologic disease; pallor; pediatric intensive care unit; petechia; prospective study; respiratory failure; skin color; time of death
Creator
An entity primarily responsible for making the resource
Pierron C; Poncelet G; Sommet J; Naudin J; Le Bourgeois F
Description
An account of the resource
Introduction: IFiReaPed study is a prospective ongoing study about perceptible end-of-life signs in Paediatric Intensive Care Unit (PICU). IFiReaPed main hypothesis is that a better information of parents about those perceptible end-of-life signs could help them to live better this situation. In the literature, there is no study on this topic in PICU, therefore our first step is to observe dying children to determine which signs are worsening or appearing during end-of-life period.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s13613-018-0474-7" target="_blank" rel="noreferrer noopener">10.1186/s13613-018-0474-7</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
Annals of Intensive Care
Artificial Ventilation
bradycardia
Brain Death
Caregiver
Cause Of Death
Child
Chronic Disease
Clinical Article
conference abstract
cyanosis
Drug Withdrawal
edema
February 2020 List
Human
Hypotension
Le Bourgeois F
Male
Naudin J
Neurologic Disease
pallor
Pediatric Intensive Care Unit
petechia
Pierron C
Poncelet G
Prospective Study
respiratory failure
skin color
Sommet J
time of death
-
Dublin Core
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Title
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April 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0092" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0092</a>
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Title
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Proxy-Reported Quality of Life and Family Impact for Children Followed Longitudinally by a Pediatric Palliative Care Team
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Quality of Life; palliative therapy; Child; Longitudinal Studies; Only Child; Palliative Care; major clinical study; statistical significance; longitudinal study; prospective study; child; attention; human; female; male; quality of life; article; diagnosis; analysis of variance; daily life activity; Metronidazole; minimal clinically important difference; physical model
Creator
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Weaver M; Wichman C; Darnall C; Bace S; Vail C; Macfadyen A
Description
An account of the resource
Background: One goal of pediatric palliative care is to maintain quality of life for children and their families. Quality-of-life investigations may be enhanced by considering clinically important metrics in addition to statistical significance. Objective: The purpose of this study was to longitudinally evaluate the effect of time on quality of life and family impact for pediatric palliative care patients across all diagnoses and ages. Design: This prospective quality-of-life study included administration of a 23-item PedsQLTM Measurement Model to evaluate for physical, emotional, social, and cognitive dimensions of the child's quality of life and a 36-item PedsQL Family Impact Module to assess for the familial impact at time of initial palliative care consultation, Month 6, and Month 12. Setting/Subjects: All pediatric patients who received a palliative care consultation in our Midwestern free-standing children's hospital over a five-year period were included in the longitudinal study (n = 87). Measurements: Repeated measures ANOVA was used to investigate how proxy-reported quality of life and family impact changed with time with attentiveness to also follow trends in minimal clinically important difference (MCID) metrics. Results: The emotional domain showed a statistically significant positive trend over the first six months of palliative care involvement (p = 0.049), while the physical domain (p = 0.028) and daily activity (p = 0.039) showed a positive improvement for the full year. In using a standard of MCID, the physical, emotional, and cognitive domains improved in the quality-of-life scale and the communication, worry, and daily activity domains improved in the family impact scale over 12 months. Conclusions: In considering quality-of-life analyses for pediatric palliative care programmatic improvements, providers may consider analyzing not only for statistical significance in collective data sets but also for clinically important difference over time.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2017.0092" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0092</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
Analysis of Variance
April 2018 List
Article
Attention
Bace S
Child
daily life activity
Darnall C
Diagnosis
Female
Human
Journal of Palliative Medicine
Longitudinal Studies
longitudinal study
Macfadyen A
Major Clinical Study
Male
Metronidazole
minimal clinically important difference
Only Child
Palliative Care
Palliative Therapy
physical model
Prospective Study
Quality Of Life
Statistical Significance
Vail C
Weaver M
Wichman C
-
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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September 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
September List 2023
URL Address
<a href="http://doi.org/10.1017/s1478951523000846" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/s1478951523000846</a>
Dublin Core
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Title
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Sedation in pediatric palliative care: The role of pediatric palliative care teams
Publisher
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Palliative and Supportive Care
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; Palliative Care; Palliative care; End of life; Palliative sedation; Terminal care; Palliative care team; Prospective study
Creator
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Peláez CMJ; Morales AJM; Parra PWF; Leyva CM; Rosique AM; Gili BT; Martino AR
Description
An account of the resource
OBJECTIVES: Palliative sedation (PS) consists of the use of drugs to alleviate the suffering of patients with refractory symptoms, through a reduction in consciousness. The aim of this study is to describe the incidence of and indications for PS in patients treated by pediatric palliative care teams (PPCT), and the relationship between PS, the place of death, and the characteristics of the care teams. METHODS: Ambispective study with the participation of 14 PPCT working in Spain. RESULTS: From January to December 2019, a total of 164 patients attended by these PPCT died. Of these, 83 (50.6%) received PS during their last 24 hours. The most frequent refractory symptoms were terminal suffering (n = 40, 48.2%), dyspnea (n = 9, 10.8%), pain (n = 8, 9.6%), and convulsive state (n = 7, 8.4%). Sedation in the last 24 hours of life was more likely if the patient died in hospital, rather than at home (62.9% vs. 33.3%, p < 0.01); if the parents had not expressed their preference regarding the place of death (69.2% vs. 45.2%, p = 0.009); and if the PPCT had less than 5 years' experience (66.7% vs. 45.5%, p = 0.018). SIGNIFICANCE OF RESULTS: PS is a real possibility in pediatric end-of-life care and relates to care planning and team expertise.
Identifier
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<a href="http://doi.org/10.1017/s1478951523000846" target="_blank" rel="noreferrer noopener">10.1017/s1478951523000846</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Child
End Of Life
Gili BT
Leyva CM
Martino AR
Morales AJM
Palliative And Supportive Care
Palliative Care
Palliative Care Team
Palliative sedation
Parra PWF
Peláez CMJ
Prospective Study
Rosique AM
September List 2050
Terminal Care
-
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/10.1002/ajmg.a.33902" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ajmg.a.33902</a>
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Title
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Sleep abnormalities in untreated patients with mucopolysaccharidosis type VI
Publisher
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American Journal of Medical Genetics Part A
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
clinical feature; priority journal; preschool child; cross-sectional study; prospective study; human; article; child; female; male; controlled study; clinical article; prevalence; disease severity; pulmonary hypertension; polysomnography; disease association; anamnesis; apnea; Doppler echocardiography; Glycosaminoglycans; Lysosomal storage diseases; lysosome storage disease; macroglossia; Maroteaux Lamy syndrome; Morquio syndrome; Mucopolysaccharidosis; oxygen saturation; oxygen/ec [Endogenous Compound]; physical examination; pigeon thorax; Sleep apnea; sleep apnea syndrome/di [Diagnosis]; sleep disorder; snoring; breathing difficulties; MPSVI; trajectory; characteristics; witnessed apnea
Creator
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John A; Fagondes S; Schwartz I; Azevedo A C; Barrios P; Dalcin P; Menna-Barreto S; Giugliani R
Description
An account of the resource
Mucopolysaccharidosis type VI (MPS VI) is a lysosomal storage disease that affects an enzyme responsible for the degradation of glycosaminoglycans (GAGs). Partially degraded GAGs accumulate in several tissues, such as the upper airways (UA), which leads to the development of obstructive sleep apnea (OSA). Our objective was to determine the prevalence of OSA in a group of untreated patients with MPS VI and the association of OSA with clinical and echocardiographic findings. Patients aged 4 years or older with a biochemical diagnosis of MPS VI were included. Data about clinical history, physical examination, Doppler echocardiogram, and overnight polysomnography (PSG) were collected. Our results showed that of the 28 participants, 14 were boys; mean age was 98.5 months, and mean age at MPS VI diagnosis was 48.4 months. Snoring, witnessed apnea, pectus carinatum, and macroglossia were the main clinical findings. PSG results showed that 23:27 patients (85.1%) had OSA which was mild in 4, moderate in 5, and severe in 14 patients. Echocardiograms showed evidence of pulmonary hypertension (PH) in 14 patients. Lower (P=0.037) and nadir SpO<inf>2</inf> (P=0.007) were positively associated with PH. Clinical signs suggestive of respiratory abnormalities during sleep were not significantly correlated with the results of PSG. We conclude that the prevalence of OSA in patients with MPS VI was high, and the level of desaturation was positively correlated with PH. Symptoms during sleep were not associated with PSG findings, which suggests that this population should undergo routine PSG as earlier as possible. This study provides baseline data to estimate the potential impact of specific treatments in the sleep abnormalities presented by patients with MPS VI. © 2011 Wiley-Liss, Inc.
Identifier
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<a href="http://doi.org/10.1002/ajmg.a.33902" target="_blank" rel="noreferrer noopener">10.1002/ajmg.a.33902</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).
2011
American Journal of Medical Genetics Part A
anamnesis
apnea
Article
Azevedo A C
Barrios P
breathing difficulties
characteristics
Child
Clinical Article
Clinical Feature
Controlled Study
Cross-sectional Study
Dalcin P
disease association
Disease Severity
Doppler echocardiography
Fagondes S
Female
Giugliani R
Glycosaminoglycans
Human
John A
Lysosomal storage diseases
lysosome storage disease
macroglossia
Male
Maroteaux Lamy syndrome
Menna-Barreto S
Morquio syndrome
MPSVI
Mucopolysaccharidosis
oxygen saturation
oxygen/ec [Endogenous Compound]
physical examination
pigeon thorax
Polysomnography
Preschool Child
Prevalence
Priority Journal
Prospective Study
pulmonary hypertension
Schwartz I
Sleep apnea
sleep apnea syndrome/di [Diagnosis]
sleep disorder
snoring
Trajectory
witnessed apnea
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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August 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
August 2019 List
URL Address
<a href="http://doi.org/10.1111/dmcn.14244" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.14244</a>
Dublin Core
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Title
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Supportive care in children with spinal muscular atrophy type 1: Results from a french multicentric study
Publisher
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Developmental Medicine and Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
death; child; female; human; major clinical study; male; palliative therapy; controlled study; conference abstract; prospective study; caregiver; clinical research; drug therapy; France; gastrostomy; history; intensive care unit; new drug; noninvasive ventilation; nusinersen; nutrition supplement; physician; sedation; sedative agent; standardization; Werdnig Hoffmann disease
Creator
An entity primarily responsible for making the resource
Hully M; Barnerias C; Chabrol B; Vuillerot C; Sabouraud P; Cuisset J M; Cances C; Ropars J; Rivier F; Isapoff A; Desguerre I
Description
An account of the resource
Introduction: This National Hospital Clinical Research Program (PHRC) was conducted in France between 2012 and 2016 to depict palliative practices in spinal muscular atrophy type 1 (SMA-1). New drugs (Nusinersen) have been developed and may modify its natural history. We thus present data about supportive care for patients included in that PHRC, comparing them to patients not included concomitantly. Patients and Methods: Supportive care data (enteral nutrition, non-invasive ventilation [NIV], sedation), age and place of death were collected prospectively from a specific health-book and a survey about conditions of death for the patients included in the PHRC and retrospectively by questioning physicians of the French Pediatric Neuromuscular Network for the other patients, some of them receiving Nusinersen. Result(s): In 18 centres, 38 patients were included in the PHRC, 43 were not; including 7 receiving Nusinersen. Mean age at diagnosis was 3.9 months (SD 2.4). 77 patients died at 7.5 months (SD 4,96), 32% at home, 8% in an intensive care unit. 85% patients received enteral nutrition, some through a gastrostomy (8%). 16% had a NIV. 70% received sedative treatment. No statistical difference was found between the two groups. However only all 3 patients (4%) receiving Nusinersen had both a gastrostomy and a NIV, without any sedation. Conclusion(s): Our data confirm that palliative care is essential in the management of ASI-1 patients, that is so far still a fatal disorder. Our data suggest that Nusinersen treatment was accompanied by more invasive supportive care, claiming for a standardization of practices in the children and caregivers' best-interest.
Identifier
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<a href="http://doi.org/10.1111/dmcn.14244" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14244</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).
2019
August 2019 List
Barnerias C
Cances C
Caregiver
Chabrol B
Child
Clinical Research
conference abstract
Controlled Study
Cuisset J M
Death
Desguerre I
Developmental Medicine and Child Neurology
Drug Therapy
Female
France
Gastrostomy
History
Hully M
Human
Intensive Care Unit
Isapoff A
Major Clinical Study
Male
new drug
Noninvasive Ventilation
nusinersen
nutrition supplement
Palliative Therapy
Physician
Prospective Study
Rivier F
Ropars J
Sabouraud P
Sedation
Sedative Agent
standardization
Vuillerot C
Werdnig Hoffmann disease
-
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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March 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
March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.318" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.318</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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Symptoms and Suffering at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions (S756)
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
adult; central nervous system; child; chromosome; chronic disease; conference abstract; data analysis; dyspnea; female; human; major clinical study; male; medical technology; pain; prospective study; young adult
Creator
An entity primarily responsible for making the resource
Marcus K; Kao P C; Ma C; Wolfe J; DeCourcey D
Description
An account of the resource
Objectives: * Identify parent perceptions of suffering at end of life in children with life-threatening complex chronic conditions. * Describe factors associated with child suffering at end of life. Original Research Background: Research in children with cancer and cardiac disease has highlighted significant suffering at end of life (EOL). Children with other life-threatening complex chronic conditions (LT-CCC) comprise a growing proportion of patients, yet little is known about their EOL suffering. Research Objectives: To examine parent perspectives on EOL suffering among children with LT-CCC and factors associated with high child suffering in the final two days of life.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.318" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.318</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adult
Central Nervous System
Child
Chromosome
Chronic Disease
conference abstract
Data Analysis
DeCourcey D
Dyspnea
Female
Human
Journal of Pain and Symptom Management
Kao P C
Ma C
Major Clinical Study
Male
March 2020 List
Marcus K
Medical Technology
Pain
Prospective Study
Wolfe J
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 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
March 2019 List
URL Address
<a href="http://doi.org/10.1136/goshabs.18" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1136/goshabs.18</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
Talking to parents about their preferences for their child's place of death: A prospective study
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
hospice; government; advanced cancer; major clinical study; prospective study; case study; outcome assessment; hematologic malignancy; solid malignant neoplasm; conference abstract; human; child; female; palliative therapy; patient care; death; multidisciplinary team; clinician; achievement; social aspect
Creator
An entity primarily responsible for making the resource
Henderson E; Peake J; Al-Khabbaz E; Langner R; Dinsdale A; Craig F; Bluebond-Langner M
Identifier
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<a href="http://doi.org/10.1136/goshabs.18" target="_blank" rel="noreferrer noopener"> 10.1136/goshabs.18</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).
Description
An account of the resource
Background Government policy identifies home as the preferred place of death (PPOD) for children and young people (CYP) and suggests a home death as an indicator of the quality of care. A recent systematic review found a lack of compelling evidence for both home as the preferred place of death and the suitability of home death as a quality outcome. Rather, one study suggested that offering a discussion is more important for outcomes. Despite these findings, the achievement of preference remains a common quality measure of paediatric palliative care (PPC) services. This study explored factors which influenced the initiation of discussions, preferences, achievement of preferences and their value as an outcome measure. Methods A prospective case series review was conducted from March 2015-February 2017. Data included: 1) Routinely collected PPC PPOD data for CYP and their parents including the offer of a discussion, preferences expressed and if preference was achieved 2) Field notes taken at multidisciplinary team (MDT) meetings between clinicians where preference was discussed after the child's death 3) Advanced care planning and place of care data extracted from medical notes. Results Data was available for 256 CYP (117 female). 29% of CYP had a solid tumour malignancy, 10% had a haematological malignancy and 61% died of non-malignant disease. Parents of CYP with malignancies were more likely to be offered a discussion of PPOD (60/73 compared to 84/156 of those with non-malignant disease). A hospital was preferred by 38%, home 28% and hospice 18%. Preference for hospital or hospice was more likely to be achieved. Per clinician report, parent preference was influenced by patient condition, continuity of care, family and social factors and availability of services. Conclusion Contrary to government policy and voluntary sector statements home deaths are not preferred by most parents. Achievement of PPOD is unsuitable as a measure of service performance.
2018
achievement
Advanced Cancer
Al-Khabbaz E
Archives of Disease in Childhood
Bluebond-Langner M
Case Study
Child
Clinician
conference abstract
Craig F
Death
Dinsdale A
Female
government
Hematologic Malignancy
Henderson E
Hospice
Human
Langner R
Major Clinical Study
March 2019 List
Multidisciplinary team
outcome assessment
Palliative Therapy
Patient Care
Peake J
Prospective Study
social aspect
solid malignant neoplasm
-
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
2019 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 2019 List
URL Address
<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27713</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 'good death' in pediatric oncology
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adult; advanced cancer; advanced practice provider; aged; avoidance behavior; childhood cancer; clergy; clinical article; cohort analysis; conference abstract; content analysis; controlled study; female; genetic transcription; human; male; medical staff; music; pediatric hospital; physiotherapist; prospective study; semi structured interview; software; sudden death; terminal care; young adult
Creator
An entity primarily responsible for making the resource
Taylor M; Barton K; Rosenberg A
Description
An account of the resource
Background: Empirical descriptions of a 'good death' exist for older adults with cancer, and these have served as the foundation for providing quality end of life care. In contrast, little is known about what, if anything, constitutes a 'good death' from the perspective of Adolescents and Young Adults (AYAs) with advanced cancer, their caregivers, or their medical teams. Pediatric oncology clinicians care for numerous patients at the end of life and can offer a breadth of insight regarding these difficult situations. Incorporating clinician experience can identify common pitfalls as well as successful strategies to inform and improve the delivery of patientcentered end of life care. Ultimately, understanding the intersection between patient, family, and provider values is critical to providing high quality end of life care for AYAs. This study provides a first step toward achieving this goal. Objective(s): This sub-analysis is part of a larger project that includes AYA patients, their parents, and bereaved parents. The objective of the present analysis was to identify factors that healthcare clinicians considered important at the end of life for AYA patients and their families. Design/Method: In this prospective qualitative cohort study, semi-structured interviews were conducted with n = 19 (74% female) oncology medical staff at a large academic pediatric hospital. Staff members included physicians (n = 7), advanced practice providers (n = 6), and other multidisciplinary providers including physical therapists, music/art therapists, and chaplains (n = 5). Interviews were audiorecorded verbatim, de-identified, and transcribed. Two primary coders conducted content analyses to identify relevant themes related to quality end of life care. Coding was reconciled iteratively with each transcript to informsubsequent thematic development and ensure saturation. Data were analyzed using ATLAS.ti software. Result(s): Twenty-seven major themes and 66 sub-themes emerged from provider interviews. Major themes included 'Acceptance,' 'Communication,' 'Meeting Families Where They Are,' and 'Protection.' Providers identified early and transparent communication within families, parental acceptance, and AYA/families maintaining a sense of control as features of a 'good death.' Lack of open communication, an unexpected/sudden death, and family denial or avoidance correlated with providers' experiences of a 'bad death.' Conclusion(s): Healthcare clinicians agree that compassionate and transparent communication are common denominators in good end of life care for AYAs with cancer. These insights may help clinicians caring for patients during a very difficult period of the cancer care trajectory. Future analysis of patient and parent interviews will guide recommendations for the practice of end of life care that is most aligned with patient/family values.
Identifier
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<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</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).
2019
Adult
Advanced Cancer
advanced practice provider
Aged
avoidance behavior
Barton K
Childhood Cancer
Clergy
Clinical Article
Cohort Analysis
conference abstract
Content Analysis
Controlled Study
Female
genetic transcription
Human
Male
Medical Staff
music
Oncology 2019 List
Pediatric Blood and Cancer
Pediatric Hospital
physiotherapist
Prospective Study
Rosenberg A
Semi Structured Interview
Software
sudden death
Taylor M
Terminal Care
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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/10.1017/cjn.2016.8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/cjn.2016.8</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The Incidence and Evolution of Parkinsonian Rigidity in Rett Syndrome: A Pilot Study
Publisher
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Canadian Journal of Neurological Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
adolescent; age; pharmacokinetics; neck; major clinical study; priority journal; scoring system; pilot study; quantitative study; cohort analysis; cross-sectional study; dopamine; prospective study; human; article; child; female; adult; disease severity; speech; dystonia; Rett syndrome; methyl CpG binding protein 2; methyl CpG binding protein 2/ec [Endogenous Compound]; mecp2; rigidity; 5 hydroxyindoleacetic acid; ankle; cerebrospinal fluid; Dopamine; genetic susceptibility; homovanillic acid; homovanillic acid/ec [Endogenous Compound]; hva; incidence; missense mutation; mobilization; muscle rigidity; muscle tone; musculoskeletal disease assessment; parkinsonism; Rett syndrome rigidity distribution score; walking difficulty; tone and motor problems; trajectory; characteristics; rigidity
Creator
An entity primarily responsible for making the resource
Humphreys P; Barrowman N
Description
An account of the resource
Background: Patients with Rett syndrome (RTT) may demonstrate parkinsonian features. Here, we report a preliminary cross-sectional and prospective evaluation of the evolution, regional distribution, and eventual incidence of rigid tone in a cohort of MECP2 mutation-positive patients. Methods: In 51 participants, muscle tone rigidity in extremity regions and neck plus hypomimia were quantified using an RTT rigidity distribution (RTTRD) score with a range of 0 to 15. RTTRD scores were correlated with age, ability to walk and speak, mutation type, and, in a small subgroup (n=9), cerebrospinal fluid (CSF) homovanillic acid (HVA) and 5-hydroxyindole-acetic acid levels. Results: Participant ages ranged from 2 years and 5 months, to 54 years. Rigidity was found in 43/51 (84.3%); it appeared as early as age 3, increased in extent with age, and was present in all participants aged >13. Ankle region rigidity appeared first, followed by proximal legs, arms, neck, and face. Ambulatory participants (n=21) had lower RTTRD scores than nonambulatory (n=30; p=0.003). We found a trend to lower scores in participants with retained speech (n=13) versus those with none (n=38; p=0.074), and no difference in scores for those with truncating (n=25) versus missense mutations (n=22; p=0.387). RTTRD scores correlated negatively with CSF HVA levels (R=-0.83; p=0.005), but not with 5-hydroxyindole-acetic acid levels (R=-0.45; p=0.22). Conclusions: Although assessment of muscle tone is somewhat subjective and the RTTRD has not been validated, this study nevertheless suggests that parkinsonian rigidity in RTT is common and frequently increases in extent with age; its severity correlates directly with impaired ambulation and inversely with CSF HVA levels. Copyright © The Canadian Journal of Neurological Sciences Inc. 2016.
Identifier
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<a href="http://doi.org/10.1017/cjn.2016.8" target="_blank" rel="noreferrer noopener">10.1017/cjn.2016.8</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).
2016
5 hydroxyindoleacetic acid
Adolescent
Adult
Age
ankle
Article
Barrowman N
Canadian Journal of Neurological Sciences
Cerebrospinal Fluid
characteristics
Child
Cohort Analysis
Cross-sectional Study
Disease Severity
Dopamine
Dystonia
Female
genetic susceptibility
homovanillic acid
homovanillic acid/ec [Endogenous Compound]
Human
Humphreys P
hva
Incidence
Major Clinical Study
mecp2
methyl CpG binding protein 2
methyl CpG binding protein 2/ec [Endogenous Compound]
missense mutation
mobilization
muscle rigidity
muscle tone
musculoskeletal disease assessment
neck
parkinsonism
Pharmacokinetics
Pilot Study
Priority Journal
Prospective Study
Quantitative Study
Rett syndrome
Rett syndrome rigidity distribution score
rigidity
scoring system
Speech
tone and motor problems
Trajectory
walking difficulty
-
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/10.1097/NCC.0000000000000783" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/NCC.0000000000000783</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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Treatment Decision Making and Regret in Parents of Children With Incurable Cancer
Publisher
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Cancer Nursing
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; child; Decision Making; article; controlled study; female; human; male; palliative therapy; education; Only Child; risk factor; prospective study; multicenter study; decision making; propensity score; incurable cancer; risk perception
Creator
An entity primarily responsible for making the resource
Ye ZJ; Cheng MH; Zhang XY; Tang Y; Liang J; Sun Z; Liang MZ; Yu YL
Identifier
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<a href="http://doi.org/10.1097/NCC.0000000000000783" target="_blank" rel="noreferrer noopener">10.1097/NCC.0000000000000783</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
2023 SE3 - Oncology
Article
Cancer Nursing
Cheng MH
Child
Controlled Study
Decision Making
Education
Female
Human
incurable cancer
Liang J
Liang MZ
Male
Multicenter Study
Only Child
Palliative Therapy
Propensity Score
Prospective Study
risk factor
risk perception
Sun Z
Tang Y
Ye ZJ
Yu YL
Zhang XY
-
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
2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1002/cncr.32553" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cncr.32553</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
Unrealistic parental expectations for cure in poor-prognosis childhood cancer
Publisher
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Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child; human; patient care; controlled study; female; major clinical study; male; cohort analysis; article; priority journal; childhood cancer; cancer recurrence; quality of life; confidence interval; cancer palliative therapy; interpersonal communication; expectation; clinical decision making; parental behavior; prospective study; cancer prognosis; neuroblastoma; questionnaire; medical record; pediatric patient; cancer risk; theoretical model; high risk population; odds ratio
Creator
An entity primarily responsible for making the resource
Mack J W; Cronin A M; Uno H; Shusterman S; Twist C J; Bagatell R; Rosenberg A; Marachelian A; Granger M M; Glade Bender J; Baker J N; Park J; Cohn S L; Levine A; Taddei S; Diller L R
Description
An account of the resource
Background: Many parents of children with advanced cancer pursue curative goals when cure is no longer possible. To the authors' knowledge, no pediatric studies to date have prospectively evaluated prognosis communication or influences on decision making in poor-prognosis childhood cancer.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/cncr.32553" target="_blank" rel="noreferrer noopener">10.1002/cncr.32553</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).
2020
Article
Bagatell R
Baker J N
Cancer
Cancer Palliative Therapy
Cancer Prognosis
Cancer Recurrence
cancer risk
Child
Childhood Cancer
Clinical Decision Making
Cohn S L
Cohort Analysis
confidence interval
Controlled Study
Cronin A M
Diller L R
Expectation
Female
Glade Bender J
Granger M M
High Risk Population
Human
Interpersonal Communication
Levine A
Mack J W
Major Clinical Study
Male
Marachelian A
Medical Record
Neuroblastoma
Odds Ratio
Oncology 2020 List
parental behavior
Park J
Patient Care
pediatric patient
Priority Journal
Prospective Study
Quality Of Life
Questionnaire
Rosenberg A
Shusterman S
Taddei S
theoretical model
Twist C J
Uno H
-
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 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
December 2021 List
URL Address
<a href="http://doi.org/10.3390/children8100905" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children8100905</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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Validation of the FACETS-OF-PPC as an Outcome Measure for Children with Severe Neurological Impairment and Their Families-A Multicenter Prospective Longitudinal Study
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
pediatric; prospective study; palliative care; multicenter study; validation; factor analysis; patient-centered outcome measures
Creator
An entity primarily responsible for making the resource
Pelke S; Wager J; Claus BB; Stening K; Zernikow B; Reuther M
Description
An account of the resource
Outcome measurement in pediatric palliative care (PPC) is receiving increasing attention. The FACETS-OF-PPC, a multidimensional outcome measure for children with severe neurological impairment, has been developed and partly validated. This study aimed to conclude the validity of the German version of the FACETS-OF-PPC. A multicenter prospective study with two points of measurement has been conducted, employing confirmatory factor analyses, reliability analyses, and analyses to evaluate the tool's sensitivity to change. Overall, 25 inpatient and outpatient teams throughout Germany recruited N = 227 parents of affected children and N = 238 professional caregivers. Participants filled out the FACETS-OF-PPC on the admission of a child to a palliative care service and at discharge from inpatient settings or two months after admission to outpatient services. The analyses revealed the questionnaire needing further adaption. Now, 17 of the original 34 items contribute to the construction of the questionnaire scales. The other items remain part of the questionnaire and may be evaluated descriptively. Furthermore, the FACETS-OF-PPC has moderate to appropriate internal consistency and is sensitive to change. Creating an outcome measure with good psychometric properties for the vulnerable population of children with severe neurological impairment appears extremely difficult. Considering these challenges, the FACETS-OF-PPC demonstrates adequate psychometric properties.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/children8100905" target="_blank" rel="noreferrer noopener">10.3390/children8100905</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
Children
Claus BB
December 2021 List
Factor Analysis
Multicenter Study
Palliative Care
patient-centered outcome measures
Pediatric
Pelke S
Prospective Study
Reuther M
Stening K
VALIDATION
Wager J
Zernikow B