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40
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Text
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<a href="http://doi.org/10.1002/pbc.25115" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.25115</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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Development of a quality of life instrument for children with advanced cancer: The pediatric advanced care quality of life scale (PAC-QoL)
Publisher
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Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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quality of life; measure; oncology
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Cataudella D; Morley TE; Nesin A; Fernandez CV; Johnston DL; Sung L; Zelcer S
Description
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BACKGROUND: There is currently no published, validated measures available that comprehensively capture quality of life (QoL) symptoms for children with poor-prognosis malignancies. The pediatric advanced care-quality of life scale (PAC-QoL) has been developed to address this gap. The current paper describes the first two phases in the development of this measure. PROCEDURES: The first two phases included: (1) construct and item generation, and (2) preliminary content validation. Domains of QoL relevant to this population were identified from the literature and items generated to capture each; items were then adapted to create versions sensitive to age/developmental differences. Two types of experts reviewed the draft PAC-QoL and rated items for relevance, understandability, and sensitivity of wording: bereaved parents (n = 8) and health care professionals (HCP; n = 7). Content validity was calculated using the index of content validity (CVI [Lynn. Nurs Res 1986;35:382-385]). RESULTS: One hundred and forty-one candidate items congruent with the domains identified as relevant to children with advanced malignancies were generated, and four report versions with a 5-choice response scale created. Parent mean scores for importance, understandability, and sensitivity of wording ranged from 4.29 (SD = 0.52) to 4.66 (SD = 0.50). The CVI ranged from 95% to 100%. These steps resulted in reductions of the PAC-QoL to 57-65 items, as well as a modification of the response scale to a 4-choice option with new anchors. CONCLUSIONS: The next phase of this study will be to conduct cognitive probing with the intended population to further modify and reduce candidate items prior to psychometric evaluation. Pediatr Blood Cancer 2014; 61:1840-1845. © 2014 Wiley Periodicals, Inc.
2014-10
Identifier
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<a href="http://doi.org/10.1002/pbc.25115" target="_blank" rel="noreferrer">10.1002/pbc.25115</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
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Journal Article
2014
Backlog
Cataudella D
Fernandez CV
Johnston DL
Journal Article
measure
Morley TE
Nesin A
Oncology
Pediatric Blood & Cancer
Quality Of Life
Sung L
Zelcer S
-
Dublin Core
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PedPalASCNet Member Publications
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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.
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<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
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A paediatric palliative care programme in development: trends in referral and location of death
Publisher
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Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
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location of death
Creator
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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
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<a href="http://doi.org/10.1136/adc.2008.153494" target="_blank" rel="noreferrer">10.1136/adc.2008.153494</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2010
Archives of Disease in Childhood
Backlog
Coulombe L
Johnston DL
Journal Article
Location Of Death
Rattray M
Splinter WM
Vadeboncoeur C
-
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/10.1200/JCO.2008.16.1562" target="_blank" rel="noreferrer">http://doi.org/10.1200/JCO.2008.16.1562</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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Availability and use of palliative care and end-of-life services for pediatric oncology patients
Publisher
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Journal Of Clinical Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
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Child; Female; Humans; Male; Questionnaires; North America; Palliative Care/utilization; Neoplasms/therapy; Pediatrics/methods; Terminal Care/utilization
Creator
An entity primarily responsible for making the resource
Johnston DL; Nagel K; Friedman DL; Meza JL; Hurwitz CA; Friebert S
Description
An account of the resource
PURPOSE: Palliative care prevents or relieves the symptoms caused by life-threatening medical conditions. Previous surveys have shown both underuse and lack of availability of these services for children with cancer throughout North America. We sought to investigate the current practices and resources surrounding palliative and end-of-life care among participating institutions of the Children's Oncology Group (COG). METHODS: A survey regarding practices and resources was developed by the COG palliative care subcommittee and was sent to all 232 institutions to complete for the calendar year 2005. RESULTS: The survey was completed by 81% of the institutions. Per institution, there were a mean of 64.6 newly diagnosed patients and 17.7 patients experiencing relapse. A palliative care team was available in 58% of institutions, a pain service in 90%, a hospice in 60%, a psychosocial support team in 80%, and a bereavement program in 59%. Complementary and alternative medicine was available in 39% of institutions and in 95% of the COG institution's community. Most services, even when available, were not well used by patients. CONCLUSION: Despite the well-established benefit of pediatric palliative care, it is only offered in 58% of COG institutions caring for children with cancer. In an era where the benefit of palliative care has been clearly established, this number should approach 100%. Efforts should be directed toward understanding barriers to provision of such services, so that they are available and well used at all childhood cancer centers.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1200/JCO.2008.16.1562" target="_blank" rel="noreferrer">10.1200/JCO.2008.16.1562</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2008
Backlog
Child
Female
Friebert S
Friedman DL
Humans
Hurwitz CA
Johnston DL
Journal Article
Journal Of Clinical Oncology
Male
Meza JL
Nagel K
Neoplasms/therapy
North America
Palliative Care/utilization
Pediatrics/methods
Questionnaires
Terminal Care/utilization