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Dublin Core
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Title
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September 2023 List
Text
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September List 2023
URL Address
<a href="http://doi.org/10.3390/children10071167" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10071167</a>
Dublin Core
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The Quality of Life of Children Facing Life-Limiting Conditions and That of Their Parents in Belgium: A Cross-Sectional Study
Publisher
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Children
Date
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2023
Subject
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Belgium; Quality of Life; outcomes; quality of life; Cross-Sectional Studies; life-limiting conditions; parents; paediatric palliative care; Cesarean Section; children’s palliative outcome scale (CPOS-2); patient-centred outcome measures
Creator
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Friedel M; Aujoulat I; Brichard B; Fonteyne C; Renard M; Degryse JM
Description
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BACKGROUND: Paediatric palliative care (PPC) aims to improve children's quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of care for children with life-limiting or life-threatening conditions (LLC/LTC). This study aims to measure the quality of life (QoL) of children with LLC/LTC followed-up by PLTs and the QoL of their parents. METHODS: During interviews, an original socio demographic questionnaire, the Children palliative outcome scale-version 2 (CPOS-2), the Fragebogen für Kinder und Jugendliche zur Erfassung der gesundheitsbezogenen Lebensqualität (KINDL) and the Quality of life in life-threatening Illness-Family caregiver (QOLLTI-F) were filled in by PLT members. Statistics were used to investigate significant differences between scores. Results were discussed and interpreted with six PLTs. RESULTS: 73 children aged 1-18 were included in the study. Especially for items focusing on emotional items, children reported their QoL as higher than their parents did. The QoL scores were not significantly associated with the child's condition's severity. CONCLUSIONS: This study provides, for the first time, an overview of the QoL of children and parents followed-up by PLTs in Belgium.
Identifier
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<a href="http://doi.org/10.3390/children10071167" target="_blank" rel="noreferrer noopener">10.3390/children10071167</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
Aujoulat I
Belgium
Brichard B
Cesarean Section
Children
children’s palliative outcome scale (CPOS-2)
Cross-sectional Studies
Degryse JM
Fonteyne C
Friedel M
Life-limiting Conditions
Outcomes
paediatric palliative care
Parents
patient-centred outcome measures
Quality Of Life
Renard M
September List 2037
-
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 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.
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February 2019 List
URL Address
<a href="http://doi.org/10.1542/peds.2018-2379" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1542/peds.2018-2379</a>
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Instruments to Measure Outcomes in Pediatric Palliative Care: A Systematic Review
Publisher
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Pediatrics
Date
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2019
Creator
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Friedel M; Aujoulat I; Dubois AC; Degryse JM
Description
An account of the resource
CONTEXT: Pediatric palliative care (PPC) is intended to promote children's quality of life by using a family-centered approach. However, the measurement of this multidimensional outcome remains challenging. OBJECTIVE: To review the instruments used to assess the impact of PPC interventions. DATA SOURCES: Five databases (Embase, Scopus, The Cochrane Library, PsychInfo, Medline) were searched. STUDY SELECTION: Inclusion criteria were as follows: definition of PPC used; patients aged 0 to 18 years; diseases listed in the directory of life-limiting diseases; results based on empirical data; and combined descriptions of a PPC intervention, its outcomes, and a measurement instrument. DATA EXTRACTION: Full-text articles were assessed and data were extracted by 2 independent researchers, and each discrepancy was resolved through consensus. The quality of the studies was assessed by using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers From a Variety of Fields checklist. RESULTS: Nineteen of 2150 articles met the eligibility criteria. Researchers in 15 used quantitative methods, and 9 were of moderate quality. Multidimensional outcomes included health-related quality of life, spiritual well-being, satisfaction with care and/or communication, perceived social support, and family involvement in treatment or place-of-care preferences. PPC interventions ranged from home-based to hospital and respite care. Only 15 instruments (of 23 reported) revealed some psychometric properties, and only 5 included patient-reported (child) outcome measures. LIMITATIONS: We had no access to the developmental process of the instruments used to present the underlying concepts that were underpinning the constructs. CONCLUSIONS: Data on the psychometric properties of instruments used to assess the impact of PPC interventions were scarce. Children are not systematically involved in reporting outcomes.
Identifier
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<a href="http://doi.org/10.1542/peds.2018-2379" target="_blank" rel="noreferrer noopener">10.1542/peds.2018-2379</a>
2019
Aujoulat I
Degryse JM
Dubois AC
February 2019 List
Friedel M
Pediatrics
-
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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July 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
July 2018 List
URL Address
<a href="http://doi.org/10.1186/s12904-018-0324-2" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-018-0324-2</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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Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014
Publisher
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BMC Palliative Care.
Date
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2018
Creator
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Friedel M; Brichard B; Fonteyne C; Renard M; Misson JP; Vandecruys E; Tonon C; Verfaillie F; Hendrijckx G; Andersson N; Ruysseveldt I; Moens K; Degryse JM; Aujoulat I
Identifier
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<a href="http://doi.org/10.1186/s12904-018-0324-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0324-2</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: Although continuity of care in paediatric palliative care (PPC) is considered to be an essential element of quality of care, it's implementation is challenging. In Belgium, five paediatric liaison teams (PLTs) deliver palliative care. A Royal Decree issued in 2010 provides the legal framework that defines the PLTs' missions, as ensuring continuity of curative and palliative care between the hospital and home for children diagnosed with life-limiting conditions. This national study describes how PLTs ensure continuity of care by describing their activities and the characteristics of the children they cared for from 2010 to 2014. METHODS: Thematic analysis of open-ended questions was performed and descriptive statistics of aggregated data issued from annual reports, collected by the Belgian Ministry of Public Health through the Cancer Plan was used. A review panel of PLT members discussed the results and contributed to their interpretation. RESULTS: Between 2010 and 2014, 3607 children and young adults (0-21 years) were cared for by the 5 Belgian PLTs (mean of 721/per year). Of these children, 50% were diagnosed with an oncological disease, 27% with a neurological or metabolic disease. Four hundred and twenty eight (428) children had died. For 51% of them, death took place at home. PLT activities include coordination; communication; curative and palliative care; education; research and fundraising. Different perceptions of what constitutes a palliative stage, heterogeneity in reporting diagnosis and the current lack of specific valid indicators to report PPC activities were found. CONCLUSION: PLTs are offering highly individualised, flexible and integrated care from diagnosis to bereavement in all care settings. Improvements in data registration and implementation of outcome measures are foreseen.
2018
Andersson N
Aujoulat I
BMC Palliative Care.
Brichard B
Degryse JM
Fonteyne C
Friedel M
Hendrijckx G
July 2018 List
Misson JP
Moens K
Renard M
Ruysseveldt I
Tonon C
Vandecruys E
Verfaillie F