1
40
23
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Not There Yet: Pediatric Palliative Care In Canada 2002 – 2012
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
2016
Creator
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Widger K; Davies D; Dauost L; Liben S; Rapoport A; Gregoire MC; Vadeboncoeur C; Stenekes S; Cyr C; Sarpal A; Roy H; Hodgson-Viden H; Robertson M; Siden H
Description
An account of the resource
Objectives: As a follow-up to a study conducted in 2002,
our objective was to obtain an accurate description of
programs that provided specialized pediatric palliative
care (PPC) in 2012 and the children who received it;
explore changes in the programs and care provided
since 2002; and determine the current proportion of
children who receive care through the programs.
Methods: Collaborators from 13 PPC programs provided
information about program structure and staffing,
and the demographics, processes, and outcomes
of care for the children who received care during
2012. Data were compared with results of a similar
study from 2002.
Results: Between 2002 and 2012 the number of PPC
programs in Canada increased from 8 to 13 and the
number of children who received care through these
programs more than quadrupled from 317 to 1401.
However, the number of core staff across all programs
increased by only two and a half times from 13.6 Full
Time Equivalents in 2002 to 33.8 in 2012. Over the
10 year period, higher proportions of children who
received care in 2012 were less than 1 year of age,
(36.3% vs. 24.0%, p LT 0.01), had congenital conditions
or conditions originating in the perinatal period
(36.0% vs. 22.1%, p LT 0.01), and died in a neonatal
or pediatric intensive care setting (24.4% vs. 12.3%, p
LT 0.01). The proportion of children who might
benefit that actually received specialized PPC increased
from 5.0 percent in 2002 to 18.6 percent in 2012.
Conclusions: Program growth and changes in child
demographics indicate improved reach of the programs
over time. However, remaining barriers prevent
the majority of children from receiving specialized
PPC services in a timely manner. Exploration of
changes over time provides information to clinicians,
and policy and decision makers to guide further program
development in Canada and internationally.
Identifier
An unambiguous reference to the resource within a given context
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.057
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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
Claude Cyr
Davies D
December 2016 List
Gregoire Marie-Claude
Heather Hodgson-Viden
Helene Roy
Journal of Pain and Symptom Management
Liben S
Lysanne Dauost
Rapoport A
Robertson M
Sarpal A
Siden H
Simone Stenekes
Vadeboncoeur C
Widger 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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2017 List
URL Address
<a href="http://doi.org/10.1016/j.hcmf.2010.04.009" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.hcmf.2010.04.009</a>
Dublin Core
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Title
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A Comparative Cost-minimization Analysis Of Providing Paediatric Palliative Respite Care Before And After The Opening Of Services At A Paediatric Hospice
Publisher
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Healthcare Management Forum
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Costs And Cost Analysis; Hospices/ec [economics]; Palliative Care/ec [economics]; Pediatrics/ec [economics]; Respite Care/ec [economics]; Child; Female; Health Care Costs; Hospices; Humans; Male; Palliative Care; Retrospective Studies; Statistics Nonparametric
Creator
An entity primarily responsible for making the resource
Pascuet E; Cowin L; Vaillancourt R; Splinter W; Vadeboncoeur C; Dumond LG; Ni A; Rattray M
Description
An account of the resource
A palliative care service provider may add or decrease overall operational costs to the healthcare system. This study assessed the costs of managing respite care for children with life-limiting illness at the Children's Hospital of Eastern Ontario for the 12-month period both before and after services at Roger's House (RH, a paediatric hospice) was made available. The opening and operation of RH for providing respite care resulted in a minimization of operational costs (n = 66 patients, mean decrease of $4,251.95 per month per patient).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.hcmf.2010.04.009" target="_blank" rel="noreferrer noopener">10.1016/j.hcmf.2010.04.009</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).
2010
Child
Costs And Cost Analysis
Cowin L
Dumond LG
Female
Health Care Costs
Healthcare Management Forum
Hospices
Hospices/ec [economics]
Humans
Male
May 2017 List
Ni A
Palliative Care
Palliative Care/ec [economics]
Pascuet E
Pediatrics/ec [economics]
Rattray M
Respite Care/ec [economics]
Retrospective Studies
Splinter W
Statistics Nonparametric
Vadeboncoeur C
Vaillancourt 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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
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
Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study.
Publisher
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Cmaj Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
Widger K; Davies D; Adam R; Vadeboncoeur C; Liben S; Amrita S; Stenekes S; Claude C; Daoust L; Gregoire Marie-Claude; Robertson M; Hodgson-Viden H; Laflamme J; Siden H
Description
An account of the resource
BACKGROUND: Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care. METHODS: A cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis. Investigators in programs that had taken part in a prior study were invited to participate. New programs that met the inclusion criteria were identified through snowball sampling within pediatric palliative care networks. Program data were obtained via surveys with coinvestigators, and health record reviews were used to obtain information about the children who received care through the programs. RESULTS: All 13 programs identified, including 3 with a free-standing hospice, agreed to take part in the study. Of the 1401 children who received care, 508 (36.2%) were under 1 year of age, and 504 (36.0%) had a congenital illness or condition originating in the perinatal period. Of the 431 children who died in 2012, 105 (24.4%) died in a critical care setting. Programs with a hospice provided care to 517 children (36.9%). Children in this group tended to be older, more often had a neurologic illness and received care for a longer time than those who received care from programs without a hospice. Overall, 18.6% (95% confidence interval 17.1%-20.3%) of deceased children who might have benefitted from specialized pediatric palliative care based on diagnosis received such care, with 110 (25.2%) receiving care for less than 8 days. INTERPRETATION: Program growth and changes in patients' demographic and clinical characteristics indicate improved reach of programs. However, barriers remain that prevent most children with life-threatening conditions from receiving specialized pediatric palliative care services.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.9778/cmajo.20160054" target="_blank" rel="noreferrer">http://doi.org/10.9778/cmajo.20160054</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
Adam R
Amrita S
Claude C
Cmaj Open
Daoust L
Davies D
Gregoire Marie-Claude
Hodgson-Viden H
Laflamme J
Liben S
Robertson M
Siden H
Stenekes S
Vadeboncoeur C
Widger 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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
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
Introducing a lexicon of terms for paediatric palliative care.
Publisher
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Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
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Spicer S; Macdonald ME; Davies D; Vadeboncoeur C; Siden H
Identifier
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403281/" target="_blank" rel="noreferrer">PMC4403281</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).
2015
Davies D
Macdonald ME
Paediatrics & Child Health
Siden H
Spicer S
Vadeboncoeur 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
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
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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Case 2: A 10-year-old boy with leg pain and swelling.
Publisher
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Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
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Doherty M; Wheaton L; Vadeboncoeur C
Identifier
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403279/" target="_blank" rel="noreferrer">PMC4403279</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).
2015
Doherty M
Paediatrics & Child Health
Vadeboncoeur C
Wheaton L
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/cacee21b5d5131ea60c92e175c8c6d34.pdf?Expires=1712793600&Signature=FYjEagVmR9EaG31u9876bRDgpkKs1u%7EJB8MvUidLAq%7E2VNwhlLchOu-wLWk9NTqFech7A7a%7Et5P1F4WN%7EvYtarxxVB-UYEcD%7ErdxA4NH-JiX5HcXWysOSsO6inzEs5quWVdopkGhC4rOW-jXh2n7ibccmicLl70iFSAzIIJQ5%7Ee6KW04-DvrGa2po9RbrHXLNtc1rh9NpKLs3dCCdmyKCebzMSCjFJG8aT1V1n3Bz0ALGioUefE%7E0FIoYrApl0bblwQ9QkosuyoiSZwtqZ7o7v46BY-BG5pJoO0iMiSFECVAedKcJghOWcHb2Lw-LuxnwYn6Tz%7EuxK7saZMekzTYoA__&Key-Pair-Id=K6UGZS9ZTDSZM
112413635b1c6539f94e0fcd5972071f
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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
Lexicon of Terms in Pediatric Palliative Care
Creator
An entity primarily responsible for making the resource
Spicer S, MacDonald ME, Vadeboncoeur C, Davies D, Siden H
Publisher
An entity responsible for making the resource available
PedPalASCNET
Description
An account of the resource
This Lexicon has been developed through a collaborative process by the PedPalASCNET network members as a tool for clinicians and researchers to standardize the usage of common terms in the field of pediatric palliative care. The Lexicon reflects the use of these words in Canada in the context of care for children with chronic complex and life-threatening conditions.
Rights
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© PedPalASCNET
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
2014
Davies D
Macdonald ME
Siden H
Spicer S
Vadeboncoeur 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
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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="https://doi.org/10.1089/jpm.2017.0028" target="_blank" rel="noreferrer">https://doi.org/10.1089/jpm.2017.0028</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 Validity of Using Health Administrative Data To Identify the Involvement of Specialized Pediatric Palliative Care Teams in Children with Cancer in Ontario, Canada.
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Creator
An entity primarily responsible for making the resource
Widger K; Vadeboncoeur C; Zelcer S; Liu Y; Kassam A; Sutradhar R; Rapoport A; Nelson K; Wolfe J; Earle C; Pole JD; Gupta S
Description
An account of the resource
BACKGROUND: Population-based research to identify underserviced populations and the impact of palliative care (PC) is limited as the validity of such data to identify PC services is largely unknown. OBJECTIVE: To determine the validity of using such data to identify the involvement of specialized pediatric PC teams among children with cancer. DESIGN: Retrospective cohort. SUBJECTS: Ontario children with cancer who died between 2000 and 2012, received care through a pediatric institution with a specialized PC team and a clinical PC database. MEASUREMENTS: All patients in the clinical databases were linked to population-based health services administrative databases. Six algorithms were created to indicate the use of formal pediatric PC teams based on the record type (physician billings vs. inpatient records vs. both) and number of eligible codes required (>/=1 vs. >/=2). Each was validated against the pediatric PC clinical databases. RESULTS: The cohort comprised 572 children; 243 were in the clinical databases. Algorithms using only inpatient records had high specificity (80%-95%) but poor sensitivity (21%-56%). Including physician billings increased sensitivity but lowered specificity. The algorithm with overall best performance required >/=2 physician billing or inpatient diagnosis codes indicating PC [sensitivity 0.79 (95% CI 0.73-0.84), specificity 0.58 (95% CI 0.53-0.64)]. CONCLUSIONS: Health administrative data identifies involvement of specialized pediatric PC teams with good sensitivity but low specificity. Studies using such data alone to compare patients receiving and not receiving specialized pediatric PC are at significant risk of misclassification and potential bias. Population-based PC databases should be established to conduct rigorous population-based PC research.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1089/jpm.2017.0028" target="_blank" rel="noreferrer">10.1089/jpm.2017.0028</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
December 2017 List
Earle C
Gupta S
Journal of Palliative Medicine
Kassam A
Liu Y
Nelson K
Pole JD
Rapoport A
Sutradhar R
Vadeboncoeur C
Widger K
Wolfe J
Zelcer S
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1093/pch/17.9.e98" target="_blank" rel="noreferrer">http://doi.org/10.1093/pch/17.9.e98</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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Nutritional differences in neurologically impaired children
Publisher
An entity responsible for making the resource available
Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Creator
An entity primarily responsible for making the resource
Riley A; Vadeboncoeur C
Description
An account of the resource
OBJECTIVES: To determine whether the recommended nutritional intake of moderately to severely neurologically impaired children is congruent with current growth parameter expectations. METHODS: Observational cross-sectional study at a children's hospice and a tertiary care children's hospital. Medically stable enterally fed children followed by the palliative care team underwent anthropometric assessment and chart review for diagnosis, intake and medications. Intakes, guidelines and recommendations were compared. RESULTS: Intakes were less than recommended. All children were <50th percentile weight-for-age, with many <3rd percentile. Fourteen of 15 were in higher percentiles for absolute and relative body fat. CONCLUSIONS: Recommended dietary intakes were not achieved by these children. Despite this, measures of body fat indicate adequate intake. Low weight values may reflect diagnosis-related growth stunting or decreased muscle mass and bone density from immobility. The Centers for Disease Control and Prevention (Georgia, USA) weight-for-age and body mass index are not suitable measures of adequate intake in this group of children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/pch/17.9.e98" target="_blank" rel="noreferrer">10.1093/pch/17.9.e98</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2012
Backlog
Journal Article
Paediatrics & Child Health
Riley A
Vadeboncoeur 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
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1136/adc.2008.153494" target="_blank" rel="noreferrer">http://doi.org/10.1136/adc.2008.153494</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
A paediatric palliative care programme in development: trends in referral and location of death
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
2010
Subject
The topic of the resource
location of death
Creator
An entity primarily responsible for making the resource
Vadeboncoeur C; Splinter WM; Rattray M; Johnston DL; Coulombe L
Description
An account of the resource
Purpose To describe the formation of a paediatric palliative care programme providing care in hospital, at home or in hospice, ensuring continuity of care where the child and family desire. Study design Descriptive analysis was performed on referral source, diagnosis and reason for discharge for patients referred to the Palliative Care Team at the Children's Hospital of Eastern Ontario in Ottawa, Ontario, Canada from 1999 to 2007. Results 341 children were referred. 24% had a neurological condition, 21% had genetic disorders or congenital anomalies, 20% had cancer, 18% had metabolic or neurodegenerative conditions and 17% had another diagnosis. The major sources of referral included paediatricians, neonatologists, oncologists and intensivists. 55% of the children have died. 58% of these died in hospital, 27% at home and 15% in hospice. Of the remaining 152 children, 7% were discharged from the programme after clinical improvement, 4% were moved to another geographic location or an adult centre, 2% were not eligible, 1% declined services and 4% were lost to follow-up. The remaining 90 children continue to be followed-up. In the hospitalised patients who died, the annual referral rate increased from 20% to >50%. Implications Referral to the palliative care team has increased over time in all diagnostic categories and from all sources. Most children died in hospital; however, a significant number of families chose end-of-life care at home or in a hospice.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.2008.153494" target="_blank" rel="noreferrer">10.1136/adc.2008.153494</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2010
Archives of Disease in Childhood
Backlog
Coulombe L
Johnston DL
Journal Article
Location Of Death
Rattray M
Splinter WM
Vadeboncoeur 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
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1093/pch/20.3.155" target="_blank" rel="noreferrer">http://doi.org/10.1093/pch/20.3.155</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
Introducing a Lexicon of Terms for Pediatric Palliative Care
Publisher
An entity responsible for making the resource available
Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
PEDI Study
Creator
An entity primarily responsible for making the resource
Spicer S; Macdonald ME; Davies D; Vadeboncoeur C; Siden H
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/pch/20.3.155" target="_blank" rel="noreferrer">10.1093/pch/20.3.155</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2015
2015
Backlog
Davies D
Journal Article
Macdonald ME
Paediatrics & Child Health
PEDI Study
Siden H
Spicer S
Vadeboncoeur 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
A name given to the resource
August 2018 List
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2018 List
URL Address
<a href="http://doi.org/10.1542/peds.2017-3417" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2017-3417</a>
Dublin Core
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Title
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Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Palliative Care; Decision Making; Intensive Care Units; Referral and Consultation; Mutation; Child; Male; Pain Management; Intellectual Disability; Health Education; Parental Attitudes; Pediatric; Pediatric Care; Connective Tissue Diseases Diagnosis; Connective Tissue Diseases Familial and Genetic In Infancy and Childhood; Connective Tissue Diseases Symptoms; Connective Tissue Diseases Therapy In Infancy and Childhood; Dyspnea Drug Therapy; Face Pathology; Family Education; Fibrosis; Morphine Therapeutic Use; Clinical; Muscle; Skeletal Abnormalities
Creator
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Vadeboncoeur C; McHardy M
Description
An account of the resource
The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program Care4Rare at the Children's Hospital of Eastern Ontario, the importance of finding a name or a genetic difference or a cause for future family planning, and the role of morphine for symptom management.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2017-3417" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-3417</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
August 2018 List
Child
Clinical
Connective Tissue Diseases Diagnosis
Connective Tissue Diseases Familial and Genetic In Infancy and Childhood
Connective Tissue Diseases Symptoms
Connective Tissue Diseases Therapy In Infancy and Childhood
Decision Making
Dyspnea Drug Therapy
Face Pathology
Family Education
Fibrosis
Health Education
Intellectual Disability
Intensive Care Units
Male
McHardy M
Morphine Therapeutic Use
Muscle
Mutation
Pain Management
Palliative Care
Parental Attitudes
Pediatric
Pediatric Care
Pediatrics
Referral And Consultation
Skeletal Abnormalities
Vadeboncoeur C
-
Dublin Core
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Title
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January 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
January 2021 List
URL Address
<a href="http://doi.org/10.1177/1178632920972655" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1178632920972655</a>
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Title
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Adaptation and Feasibility of the interRAI Family Carer Needs Assessment in a Pediatric Setting
Publisher
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Health Services Insights
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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child; Family caregivers; Informal caregivers; needs assessment; pediatric; self report; Surveys and questionnaires
Creator
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Stochitoiu IA; Vadeboncoeur C
Description
An account of the resource
Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family Carer Needs Assessment in carers of children, seeking to evaluate and improve its ability to capture their needs. This is a prospective pilot study of family carers of children with serious illness receiving care at a pediatric hospice. Thirty carers completed the self-assessment form. Additional feedback was sought inquiring about the appropriateness of questions and missing information relevant to the pediatric setting. All participants reported the assessment captured important information across multiple domains. Additional questions surrounding extra costs, home and school supports, as well as direct impacts of caregiving activities on pain and relationships were identified as important adaptations. The most common unmet needs in carers and care recipients were episodic relief from caregiving (n=17) and housing adaptation (n=17), respectively. Overall, a comprehensive assessment form is feasible in identifying the diverse needs of family carers of children. Future research should focus on using pediatric specific interRAI tools to guide improvements in policy and practice that can address unmet needs.
Identifier
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<a href="http://doi.org/10.1177/1178632920972655" target="_blank" rel="noreferrer noopener">10.1177/1178632920972655</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Child
Family Caregivers
Health Services Insights
Informal caregivers
January 2021 List
Needs Assessment
Pediatric
Self Report
Stochitoiu IA
Surveys And Questionnaires
Vadeboncoeur C
-
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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/10.1089/jpm.2020.0496" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2020.0496</a>
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Title
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Pediatric Project ECHO®: A Virtual Community of Practice to Improve Palliative Care Knowledge and Self-Efficacy among Interprofessional Health Care Providers
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
2020
Subject
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pediatric palliative care; continuing professional development; distance education; Project ECHO
Creator
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Lalloo C; Osei-Twum J; Rapoport A; Vadeboncoeur C; Weingarten K; Veldhuijzen van Zanten S; Widger K; Stinson J
Description
An account of the resource
Background: Health care providers (HCPs) require ongoing training and mentorship to fully appreciate the palliative care needs of children. Project ECHO® (Extension for Community Healthcare Outcomes) is a model for delivering technology-enabled interprofessional education and cultivating a community of practice among HCPs who care for children with life-limiting illness. Objectives: To develop, implement, and evaluate the Project ECHO model within the pediatric palliative care (PPC) context. Specific objectives were to evaluate (1) participation levels, (2) program acceptability, (3) HCP knowledge changes, (4) HCP self-efficacy changes, and (5) perceived practice changes after six months. Intervention: An interprofessional PPC curriculum was informed by a needs assessment. The curriculum was delivered through monthly virtual 90-minute TeleECHO sessions (didactic presentation and case-based learning) from January 2018 to December 2019. The program was freely available to all HCPs wishing to participate. Design: A mixed-methods design with repeat measures was used. Surveys were distributed at baseline and six months to assess outcomes using 7-point Likert scales. Descriptive and inferential statistical analyses were conducted. The study was approved by the Research Ethics Board at the Hospital for Sick Children. Results: Twenty-four TeleECHO sessions were completed with a mean of 32 ± 12.5 attendees. Acceptability scores (n = 43) ranged from 5.1 ± 1.1 to 6.5 ± 0.6. HCPs reported improvements in knowledge and self-efficacy across most topics (11 out of 12) and skills (8 out of 10) with demonstrated statistical significance (p < 0.05). Most participants reported positive practice impacts, including enhanced ability to provide PPC in their practice. Conclusion: Project ECHO is a feasible and impactful model for fostering a virtual PPC-focused community of practice among interprofessional HCPs.
Identifier
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<a href="http://doi.org/10.1089/jpm.2020.0496" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0496</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
continuing professional development
distance education
February 2021 List
Journal of Palliative Medicine
Lalloo C
Osei-Twum J
Pediatric Palliative Care
Project ECHO
Rapoport A
Stinson J
Vadeboncoeur C
Veldhuijzen van Zanten S
Weingarten K
Widger K
-
Dublin Core
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Title
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October 2021 List
Text
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Citation List Month
October 2021 List
URL Address
<a href="http://doi.org/10.1080/14656566.2021.1965574" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/14656566.2021.1965574</a>
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Title
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Medications to manage infant pain, distress and end-of-life symptoms in the immediate postpartum period
Publisher
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Expert Opinion on Pharmacotherapy
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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palliative care; symptom management; life-limiting condition; perinatal palliative care; Comfort care; medications
Creator
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Veldhuijzen van Zanten S; Ferretti E; MacLean G; Daboval T; Lauzon L; Reuvers E; Vadeboncoeur C
Description
An account of the resource
INTRODUCTION: Perinatal palliative care (PnPC) is a growing field where healthcare providers from multiple disciplines are supporting families and providing holistic care for their babies with life-limiting illnesses. It is important to have an approach that includes the standardized management of end-of-life symptoms that are anticipated around the time of birth. AREAS COVERED: A need was identified to develop medication orders for the initial pharmacological management of symptoms at end-of-life for infants with life-limiting conditions intended for use outside of an intensive care setting. The choice of medications was based on a review of the literature, discussion with content experts and guided by their ease of use, accessibility and noninvasive route of delivery. The recommendations can be used as a guide for the initial management of common symptoms encountered in perinatal palliative care. EXPERT OPINION: There are studies looking at many qualitative aspects of perinatal palliative care including perceptions of care, decision-making, and bereavement; however, few specifically focus on symptom management in the delivery room and postpartum ward settings. There is a need for standardization of the medical management of infants born with life-limiting conditions whose parents choose to pursue palliative care.
Identifier
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<a href="http://doi.org/10.1080/14656566.2021.1965574" target="_blank" rel="noreferrer noopener">10.1080/14656566.2021.1965574</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Comfort Care
Daboval T
Expert Opinion on Pharmacotherapy
Ferretti E
Lauzon L
Life-limiting Condition
MacLean G
medications
October 2021 List
Palliative Care
Perinatal Palliative Care
Reuvers E
Symptom Management
Vadeboncoeur C
Veldhuijzen van Zanten S
-
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Title
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February 2022 List
Text
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February 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2021.0175" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2021.0175</a>
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Children's Health Care Utilization and Cost in the Last Year of Life: A Cohort Comparison with and without Regional Specialist Pediatric Palliative Care
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
2022
Subject
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pediatrics; palliative care; health care; cost; utilization
Creator
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Lysecki DL; Gupta S; Rapoport A; Rhodes E; Spruin S; Vadeboncoeur C; Widger K; Tanuseputro P
Description
An account of the resource
Background: Research remains inconclusive regarding the impact of specialist pediatric palliative care (SPPC) on health care utilization and cost. Objective: To better understand and quantify the impact of regional SPPC services on children's health care utilization and cost near end of life. Design: A retrospective cohort study used administrative databases to compare outcomes for child decedents (age 31 days to 19 years) from two similar regions in Ontario, Canada between 2010 and 2014, wherein one region had SPPC services (SPPC+) and the other did not (SPPC−). Measurements: Administrative databases provided demographics, health care utilization (days), and costs Canadian dollars) across settings in the last year of life, and location of death. Multivariable analyses produced relative rates (RRs) of health care days (acute and home care), intensive care unit (ICU) days, and health care costs (inpatient, outpatient, home, and physician) as well as the odds ratio (OR) of in-hospital death. Counterfactual analysis quantified the differences in utilization and costs. Results: A total of 807 children were included. On multivariable analysis, residence in the SPPC+ region (n = 363) was associated with fewer mean health care days (RR = 0.73; 95% confidence interval [CI]: 0.59–0.90); fewer mean ICU days (RR = 0.64; 95% CI: 0.44–0.94); lower mean health care costs (RR = 0.71; 95% CI: 0.56–0.91); and lower likelihood of in-hospital death (OR = 0.67; 95% CI: 0.49–0.92). The counterfactual analysis estimated mean reductions of 16.2 days (95% CI: 14.4–18.0) and $24,940 (95% CI: $21,703–$28,177) per child in the SPPC+ region. Conclusions: Although not a causal study, these results support an association between regional SPPC services and decreased health care utilization, intensity, and cost for children near end of life.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2021.0175" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0175</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).
2022
Cost
February 2022 List
Gupta S
Health Care
Journal of Palliative Medicine
Lysecki DL
Palliative Care
Pediatrics
Rapoport A
Rhodes E
Spruin S
Tanuseputro P
utilization
Vadeboncoeur C
Widger K
-
Dublin Core
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Title
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May 2022 List
Text
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May 2022 List
URL Address
<a href="http://doi.org/10.1177/11786329221078124" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/11786329221078124</a>
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Title
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interRAI Pediatric Home Care (PEDS-HC) Assessment Tool: Evaluating Ontario Healthcare Workers’ Experience
Publisher
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Health Services Insights
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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focus groups; Home care services; needs assessment; pediatrics
Creator
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Lynch-Godrei A; Doherty M; Vadeboncoeur C
Description
An account of the resource
High quality pediatric homecare requires comprehensive assessment of the needs, supports, and health care challenges of children with special healthcare needs and their families. There is no standardized homecare assessment system to evaluate children’s clinical needs in the home (support services, equipment, etc.) in Ontario, Canada, which contributes to inequitable homecare service allocation. In 2017, the interRAI Pediatric Home Care assessment tool (PEDS-HC) was implemented on a pilot basis in several regions of Ontario. This qualitative descriptive study explores the experiences of homecare coordinators using the PEDS-HC, seeking to understand the utility and feasibility of this tool through focus group discussion. Four major themes were identified including: the benefits of the tool; areas for modification; challenges to use; and Clinical Assessment Protocols to develop. These themes can guide modifications to the tool to improve utility and improve pediatric home care services. The PEDS-HC is an effective tool to assess children needing homecare in a standardized and comprehensive manner. Use of the tool can improve the quality of homecare services by ensuring equity in service provision and facilitate early identification of clinical issues to prevent unexpected health deteriorations.
Identifier
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<a href="http://doi.org/10.1177/11786329221078124" target="_blank" rel="noreferrer noopener">10.1177/11786329221078124</a>
2022
Doherty M
Focus Groups
Health Services Insights
home care services
Lynch-Godrei A
May 2022 List
Needs Assessment
Pediatrics
Vadeboncoeur C
-
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Title
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November 2022 List
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November 2022 List
URL Address
<a href="http://doi.org/10.1186/s12913-022-08442-z" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12913-022-08442-z</a>
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Title
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Use of the interRAI PEDS HC in Children Receiving Home Care in Ontario, Canada
Publisher
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BMC Health Services Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Home Care; Ontario; Child; Epidemiology; Female; Human; Male; Palliative Therapy; Pilot Study; Prevalence
Creator
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Thorburn-Winsor E; Doherty M; Jones A; Vadeboncoeur C
Description
An account of the resource
BACKGROUND: There is no standard assessment tool for pediatric home care recipients in Canada, limiting the availability of comparable, population-based data. The objective of this study was to describe pediatric home care recipients who were part of a pilot implementation of the interRAI Pediatric Home Care Assessment Form (PEDS-HC) among medically complex children referred to home care agencies in three regions in Ontario, Canada. METHOD(S): All 14 agencies providing home care to children in Ontario were invited to participate in the pilot project, and 9 participated in an education session. Three of these agencies used the PEDS-HC during the pilot implementation between February 2018 and March 2020. We used de-identified data to describe the demographics, home care needs, and diagnoses of pediatric home care recipients. RESULT(S): The sample of 474 assessments was predominantly male (60.34%), with an average age at assessment of 12.36years (SD 4.56). Most (78.48%) reported English as their primary language. Most children assessed had between two and eight medical diagnoses. Diagnoses reported varied: gastrointestinal, musculoskeletal, respiratory and neurological conditions were most common. The prevalence of urinary incontinence (40.1%) and bowel incontinence (70.9%) were high. Over 60% of children were rarely or only sometimes understood. A majority of children had adequate hearing (83.5%) and vision (68.6%). Extensive services were being provided in 10% of children assessed. Most children received care both at school and at home (70.89%), with 20.89% receiving home care only. CONCLUSION(S): The PEDS-HC provides a detailed, standardised descriptive profile of medically complex children receiving home care. Expanding use of PEDS-HC would promote consistency in care planning and delivery on the patient level, enable cross-jurisdictional comparisons, and inform utilization tracking and health care funding decisions on the organization and provincial levels.Copyright © 2022. The Author(s).
Identifier
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<a href="http://doi.org/10.1186/s12913-022-08442-z" target="_blank" rel="noreferrer noopener">10.1186/s12913-022-08442-z</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).
Child
Female
Male
2022
BMC Health Services Research
Doherty M
Epidemiology
Home Care
Human
Jones A
November 2022 List
Ontario
Palliative Therapy
Pilot Study
Prevalence
Thorburn-Winsor E
Vadeboncoeur C
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/b0b7d0fbb423980126cb1d99f7b93f16.pdf?Expires=1712793600&Signature=c33xKPjb8qIHj5TTIT5fJyidzJ7VPm59hN%7E%7EFWmdTVwwxyzqxefCa3mUPOoS23YyHy1sLtmaKotKt6%7Ej8fKqiG3X24EJj263f7I7RZ89Ku2FqlqJGtGNNkk9Dql-0tHTy0po9AAEwtMhSUXE7gCjnF7ibodUIV3EMhc2f7xrZb%7EKUGON-1rRF1VzdDh0N6ryJL-YECZKWVSjFJHlCLOOUbmqTcA4YK-SbTGtGBH6JVPrbTwENfW8W1TZedUUcdauSThIPwLDRBrk8HzjMWVz1NfIZyEQ4nkmmGtqwx8B772GuBdFygDVIS-HCoJhCXphWl-7WPMUU9PwMB8-nw7gjA__&Key-Pair-Id=K6UGZS9ZTDSZM
c7930e2efc8577267b3255fc7be44620
Dublin Core
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PedPalASCNet Member Posters
Still Image
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Title
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Caregiver-reported nociceptive pain responses in children with significant neurological impairment (Poster)
Creator
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Johnston E; Orkin J; Vadeboncoeur C; Gnanakumar V; Dewan T; Richardson A; Holsti L; Carleton B; Oberlander T; Siden H
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Rights
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<span>Article information provided for research and reference use. It is licensed under the Creative Commons License: </span><a href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
Carleton B
Dewan T
Gnanakumar V
Holsti L
Johnston E
Oberlander T
Orkin J
PIUO
Richardson A
Siden H
Vadeboncoeur C
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/3f4c6308bc3d3f5d06d3ad990d2eef4c.pdf?Expires=1712793600&Signature=F9GIWvIa1fN7tbGTXTu5XukHThQ%7Ef5vDaHoiSF0XEyO6DGJ1JCZIIOvWqupTJgg4cxxBIPRphXwmX488mMY6n3sGEjCILBe7LjPqf9%7ERgm5TVu0v7BY9EevE2nVZ8j5MU21Gg-60HcdtoK8tzHpUOJ1Ojh70G9JWoxulmcP73Q9dG06HHWSdeVjWmXVN7U%7EOELISKzlhr32WfuNymz%7Etxo5cfmxjJ87I1L3X43yqBMa3WIwNxZEYMlJJanqhMxwugy4EGn-TASRFi0JJp8zAjeYMLWLlkGteZQYbnK5qq%7Exfbx8mM2-ihsx35as%7EnPVS2VgQmkiDpIsC6vNrmaoVdg__&Key-Pair-Id=K6UGZS9ZTDSZM
8b44e0f0b438b95b5b793aa7e027474e
Dublin Core
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PedPalASCNet Member Posters
Still Image
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Ketchum K; Carleton B; Dewan T; Gnanakumar V; Orkin J; Richardson A; Vadeboncoeur C; Oberlander T; Siden H
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Title
A name given to the resource
Pain Detectives: Optimizing the Management of Pain and Irritability of Unknown Origin in Children with Severe Neurological Impairment (Poster)
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<span>Article information provided for research and reference use. It is licensed under the Creative Commons License: </span><a href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
Carleton B
Dewan T
Gnanakumar V
Ketchum K
Oberlander T
Orkin J
PIUO
Richardson A
Siden H
Vadeboncoeur C
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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URL Address
<a href="http://doi.org/10.1186/s12887-022-03632-4" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12887-022-03632-4</a>
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Title
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Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability
Publisher
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BMC Pediatrics
Date
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2022
Subject
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Adolescent; Child; Child, Preschool; Children; Clinical pathway; Emergency Service, Hospital; Hospitalization; Hospitals, Pediatric; Humans; Infant; Infant, Newborn; Pain; Retrospective Studies; Severe neurological impairment; PIUO
Creator
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Fishman I; Siden H; Vadeboncoeur C
Description
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BACKGROUND: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition, communication, and motor skills are impaired and other organ systems are impacted. Pain is difficult to identify and treat in children with SNI because of communication impairment. When a clear cause of pain is not determined, the term "Pain and Irritability of Unknown Origin (PIUO)" is used to describe pain-like behaviours. This study explores the clinical care received by children with SNI admitted to hospital after presenting to the emergency department of a tertiary pediatric hospital with pain or irritability. Findings are compared to the approach suggested in the PIUO pathway, an integrated clinical pathway for identifying and treating underlying causes of pain and irritability in children with complex conditions and limited communication. METHODS: Retrospective chart review of children (age 0 to 18 years inclusive) with diagnoses compatible with SNI presenting with pain, irritability, and/or unexplained crying that required hospitalization between January 1st, 2019 and December 31st, 2019. Descriptive statistics were used to analyze the clinical care received by children in whom a source of pain was identified or not. In children for whom no cause of pain was identified, investigations completed were compared to the PIUO pathway. RESULTS: Eight hospital admissions of six unique children were included for data analysis. A cause for pain and irritability was identified and resolved in three patients. In children with PIUO, there were gaps in history taking, physical examination, and investigations that might have allowed a cause of pain and irritability to be found. Pain was assessed using the r-FLACC pain scale and varying medications for pain/irritability were given during each hospital admission. CONCLUSION: Children with SNI admitted to a tertiary pediatric hospital did not undergo a standardized approach to identifying a cause of pain and irritability. Future efforts should explore the effectiveness of the PIUO pathway, a standardized approach to reducing and resolving pain in children with SNI.
Identifier
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<a href="http://doi.org/10.1186/s12887-022-03632-4" target="_blank" rel="noreferrer noopener">10.1186/s12887-022-03632-4</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).
2022
Adolescent
Bmc Pediatrics
Child
Child, Preschool
Children
Clinical pathway
Emergency Service, Hospital
Fishman I
Hospitalization
Hospitals, Pediatric
Humans
Infant
Infant, Newborn
Pain
PIUO
Retrospective Studies
severe neurological impairment
Siden H
Vadeboncoeur C
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/ad8d18ae1130f7687deb1d2f7f8ac343.pdf?Expires=1712793600&Signature=Mgncstyi7nDnC6z6Z2f5SoiMaOWuAaxEjIb9GOZl3-VMxamYBZZXasLg7wQOrSEHQX9TDumnm1yEHf5p66T8VlSGxU08I1wR7LBD-PgU7p34HgCRCBxY755fgpzZOxbmwKB8Q4I0r78ajicPer4l2c3xe8n8BmSc7FSDwezrZX59ZakKAU%7EJwsPtKVVMqF%7EwsSANbzWdKjOvPdSC6eZk3CkQ3h6cps8FH36Q9FZ0mhLoyRDIWsqQOTnhqyyUr6K397mVKTGRph2tEB%7E-oJIEucxsJoJ6KW3Ga4%7EGf9y1J1loP7EfSdWelR19VYWuahNNMZfgWZ1-vH2a%7E2LtYyPbVA__&Key-Pair-Id=K6UGZS9ZTDSZM
138071d0c806b737f1847b68cf7ecdd6
Dublin Core
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Title
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PedPalASCNet Member Posters
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairment: Phase I (Poster)
Creator
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Lim E; Siden H; Dewan T; Gnanakumar V; Orkin J; Richardson A; Vadeboncoeur C; Holsti L; Oberlander T; Andrews G
Date
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2023
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<span>Article information provided for research and reference use. It is licensed under the Creative Commons License: </span><a href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
Andrews G
Dewan T
Gnanakumar V
Holsti L
Lim E
Oberlander T
Orkin J
PIUO
poster
Richardson A
Siden H
Vadeboncoeur C
-
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Title
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June 2023 List
Text
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June 2022 List
URL Address
<a href="https://www.cmajopen.ca/content/11/2/E298">https://www.cmajopen.ca/content/11/2/E298</a>
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Location of death among children with life-threatening conditions: a national population-based observational study using the Canadian Vital Statistics Database (2008-2014)
Publisher
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CMAJ Open
Date
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2023
Subject
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Humans; Child; Retrospective Studies; Infant Newborn; Hospital Mortality; Ontario; Palliative Care; Hospitalization; Only Child
Creator
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Widger K; Brennenstuhl S; Tanuseputro P; Nelson KE; Rapoport A; Seow H; Siden H; Vadeboncoeur C; Gupta S
Description
An account of the resource
BACKGROUND: Patterns in location of death among children with life-threatening conditions (e.g., cancer, genetic disorders, neurologic conditions) may reveal important inequities in access to hospital and community support services. We aimed to identify demographic, socioeconomic and geographic factors associated with variations in location of death for children across Canada with life-threatening conditions. METHODS: We used a retrospective observational cohort design and the Canadian Vital Statistics Database to identify children aged 19 years or younger who died from a life-threatening condition between Jan. 1, 2008, and Dec. 31, 2014. We used multivariable logistic regression to determine predictors of in-hospital death for children aged 1 month to 19 years, and for neonates younger than 1 month. RESULTS: Overall, 13 115 decedents younger than 19 years had life-threatening conditions. Of 5250 children and 7865 neonates, 74.2% and 98.1%, respectively, died in hospital. Among children, we found a higher proportion of hospital deaths in the lowest (v. highest) income quintile (odds ratio [OR] 1.59, 95% confidence interval [CI] 1.28-1.97), and a lower proportion among children living more than 400 km (v. < 50 km) from a pediatric hospital (OR 0.73, 95% CI 0.65-0.86). Compared with Ontario, hospital death was most common in Quebec (OR 1.38, 95% CI 1.14-1.67) and least common in British Columbia (OR 0.43, 95% CI 0.34-0.53). Compared with an oncologic cause of death, all causes except neurologic and metabolic conditions had significantly higher odds of dying in hospital. INTERPRETATION: In addition to demographics, we identified socioeconomic and geographic differences in location of death, suggesting potential inequities in access to high-quality care at the end of life. Health care policies and practices must ensure equitable access to services for children across Canada, particularly at the end of their life.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Identifier
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<a href="https://www.cmajopen.ca/content/11/2/E298">10.9778/cmajo.20220070</a>
2023
Brennenstuhl S
Child
Cmaj Open
Gupta S
Hospital Mortality
Hospitalization
Humans
Infant Newborn
June 2022 List
Nelson KE
Only Child
Ontario
Palliative Care
Rapoport A
Retrospective Studies
Seow H
Siden H
Tanuseputro P
Vadeboncoeur C
Widger K
-
Dublin Core
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Title
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September 2023 List
Text
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Citation List Month
September List 2023
URL Address
<a href="http://doi.org/10.1186/s12887-023-04186-9%5C"> http://doi.org/10.1186/s12887-023-04186-9\</a>"
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study
Publisher
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BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Child; Only Child; Terminal Care
Creator
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Widger K; Brennenstuhl S; Nelson KE; Seow H; Rapoport A; Siden H; Vadeboncoeur C; Gupta S; Tanuseputro P
Description
An account of the resource
Background Children with life-threatening conditions frequently experience high intensity care at the end of life, though most of this research only focused on children with cancer. Some research suggests inequities in care provided based on age, disease type, socioeconomic status, and distance that the child lives from a tertiary hospital. We examined: 1) the prevalence of indicators of high intensity end-of-life care (e.g., hospital stays, intensive care unit [ICU] stays, death in ICU, use of cardiopulmonary resuscitation [CPR], use of mechanical ventilation) and 2) the association between demographic and diagnostic factors and each indicator for children with any life-threatening condition in Canada. Methods We conducted a population-based retrospective cohort study using linked health administrative data to examine care provided in the last 14, 30, and 90 days of life to children who died between 3 months and 19 years of age from January 1, 2008 to December 31, 2014 from any underlying life-threatening medical condition. Logistic regression was used to model the association between demographic and diagnostic variables and each indicator of high intensity end-of-life care except number of hospital days where negative binomial regression was used. Results Across 2435 child decedents, the most common diagnoses included neurology (51.1%), oncology (38.0%), and congenital illness (35.9%), with 50.9% of children having diagnoses in three or more categories. In the last 30 days of life, 42.5% (n = 1035) of the children had an ICU stay and 36.1% (n = 880) died in ICU. Children with cancer had lower odds of an ICU stay (OR = 0.47; 95% CI = 0.36–0.62) and ICU death (OR = 0.37; 95%CI = 0.28–0.50) than children with any other diagnoses. Children with 3 or more diagnoses (vs. 1 diagnosis) had higher odds of > 1 hospital stay in the last 30 days of life (OR = 2.08; 95%CI = 1.29–3.35). Living > 400 km (vs < 50 km) from a tertiary pediatric hospital was associated with higher odds of multiple hospitalizations (OR = 2.09; 95%CI = 1.33–3.33). Conclusion High intensity end of life care is prevalent in children who die from life threatening conditions, particularly those with a non-cancer diagnosis. Further research is needed to understand and identify opportunities to enhance care across disease groups.
Identifier
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<a href="http://doi.org/10.1186/s12887-023-04186-9%5C">10.1186/s12887-023-04186-9\</a>"
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Bmc Pediatrics
Brennenstuhl S
Child
Gupta S
Nelson KE
Only Child
Rapoport A
Seow H
September List 2059
Siden H
Tanuseputro P
Terminal Care
Vadeboncoeur C
Widger K