1
40
15
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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
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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>
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The Validity of Using Health Administrative Data To Identify the Involvement of Specialized Pediatric Palliative Care Teams in Children with Cancer in Ontario, Canada.
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Journal Of Palliative Medicine
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2017
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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
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<a href="https://doi.org/10.1089/jpm.2017.0028" target="_blank" rel="noreferrer">10.1089/jpm.2017.0028</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
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
-
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/10.1016/j.jpainsymman.2017.11.014" target="_blank" rel="noreferrer">https://doi.org/10.1016/j.jpainsymman.2017.11.014</a>
Dublin Core
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Title
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The limitations of "how are you feeling?"
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
2017
Subject
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Patient- Centered Care; Patient-reported Outcomes; Pediatric Palliative Care; Quality Of Life; Symptom Assessment
Creator
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Rosenberg AR; Orellana L; Wolfe J; Dussel V
Identifier
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<a href="https://doi.org/10.1016/j.jpainsymman.2017.11.014" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2017.11.014</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
December 2017 List
Dussel V
Journal of Pain and Symptom Management
Orellana L
Patient- Centered Care
Patient-reported Outcomes
Pediatric Palliative Care
Quality Of Life
Rosenberg AR
Symptom Assessment
Wolfe J
-
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/10.1016/j.jpeds.2017.09.078" target="_blank" rel="noreferrer">https://doi.org/10.1016/j.jpeds.2017.09.078</a>
Notes
Copyright (c) 2017 Elsevier Inc. All rights reserved.
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Title
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Patterns of Care at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions.
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The Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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Complex Chronic Conditions; End-of-life Care; Palliative Care; Parental Perspectives
Creator
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DeCourcey DD; Silverman M; Oladunjoye A; Balkin EM; Wolfe J
Description
An account of the resource
OBJECTIVE: To characterize patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions (LT-CCCs) and to compare them by LT-CCC type. STUDY DESIGN: Cross-sectional survey of bereaved parents (n = 114; response rate of 54%) of children with noncancer, noncardiac
Identifier
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<a href="https://doi.org/10.1016/j.jpeds.2017.09.078" target="_blank" rel="noreferrer">10.1016/j.jpeds.2017.09.078</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Balkin EM
Complex Chronic Conditions
December 2017 List
DeCourcey DD
End-of-life Care
Oladunjoye A
Palliative Care
Parental Perspectives
Silverman M
The Journal Of Pediatrics
Wolfe J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2017 List
URL Address
<a href="http://doi.org/10.1016/j.ijrobp.2017.06.208" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ijrobp.2017.06.208</a>
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Title
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Palliative radiation therapy for pediatric patients: Parental perceptions
Publisher
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International Journal Of Radiation Oncology Biology Physics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Perception; Analgesia; Brain; Breathing; Cancer Staging; Child; Comfort; Disease Course; Expectation; Female; Human; Institutional Review; Male; Palliative Therapy; Prevention; Prospective Study; Quality Of Life; Questionnaire; Radiotherapy; Spinal Cord Compression; Statistics
Creator
An entity primarily responsible for making the resource
Lee BKY; Apkon D; Wolfe J; Marcus KJ
Description
An account of the resource
Purpose/Objective(s): Palliative radiation therapy (pRT) for pediatric cancer patients is often used to treat pain, neurologic symptoms, and other conditions from progressive cancer that affects quality of life. However, though the doses used are generally lower than those used for curative treatment, pRT may still introduce undesirable side effects. A parent's decision to pursue additional anti-cancer therapy towards the end of their child's life may be challenging, as the perceived risk-versus-benefit ratio may be altered depending on their knowledge and expectations for the pRT. As anti-cancer directed treatment continues to be offered, the line between curing and palliation may become blurred. The goal of this study was to explore parental perceptions of pRT with regards to its purpose and expected outcome. Purpose/Objective(s): Forty-five children referred for pRT were enrolled in a prospective institutional review board-approved study. At the time of initial consultation, parents were counseled regarding the indication for pRT and the expected outcomes of treatment. At one to three months after treatment completion, a questionnaire was given to parents to assess their understanding of the role of pRT for their child. They were asked to specify the reasons for pRT as well as their expectations of the treatment outcome. Descriptive statistics were used to analyze the results of the questionnaire. Results: The main indications for pRT in this cohort were pain (44%), spinal cord compression (3%), neurologic symptoms from brain mass (18%), leptomeningeal involvement (3%), asymptomatic radiologic progression (18%), and other indications (13%). When asked about the reasons for pRT in their child, parents reported the following: pain relief (51%), addressing new disease such as radiologic progression (40%), prevention of damage to spinal cord (11%), and help with breathing (2%). 49% listed additional reasons, including control of existing tumors or prevention of pain (as opposed to pain control). When asked about their expectations for the pRT, 76% of parents marked improvement in quality of life. An equal proportion (76%) also expected prolongation of their child's life. 53% included pain relief as one of their expectations. Interestingly, 40% of parents expected the pRT to also cure their child's malignant disease. Conclusion: Radiation therapy is an important modality in palliative care for children with end-stage cancer. Improved quality of life through pRT sometimes blurs the distinction between palliative and curative intent of the treatment. In this study, we found that a large proportion of parents perceived pRT to play a curative role for their child's malignancy, despite having been informed initially that the treatment was palliative. Thus, many parents seem to derive hope and comfort from having their child continue to receive some active treatment. Studies are ongoing to determine parents' assessment of whether pRT did achieve what they had hoped for their child.
Identifier
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<a href="http://doi.org/10.1016/j.ijrobp.2017.06.208" target="_blank" rel="noreferrer">10.1016/j.ijrobp.2017.06.208</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Analgesia
Apkon D
Brain
Breathing
Cancer Staging
Child
Comfort
December 2017 List
Disease Course
Expectation
Female
Human
Institutional Review
International Journal Of Radiation Oncology Biology Physics
Lee BKY
Male
Marcus KJ
Palliative Therapy
Perception
Prevention
Prospective Study
Quality Of Life
Questionnaire
Radiotherapy
Spinal Cord Compression
Statistics
Wolfe J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2017 List
Notes
<p>1098-4275<br />Sisk, Bryan A<br />DuBois, James<br />Kodish, Eric<br />Wolfe, Joanne<br />Feudtner, Chris<br />Journal Article<br />United States<br />Pediatrics. 2017 Jun;139(6). pii: e20170234. doi: 10.1542/peds.2017-0234. Epub 2017 May 12.</p>
Dublin Core
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Title
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Navigating Decisional Discord: The Pediatrician's Role When Child and Parents Disagree
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Decision Making; Dissent And Disputes; Parental Consent; Parent-child Relations; Pediatricians; Physician's Role; Adolescent; Child; Consensus; Female; Humans; Male; Mental Competency; Models Psychological
Creator
An entity primarily responsible for making the resource
Sisk BA; DuBois J; Kodish E; Wolfe J; Feudtner C
Description
An account of the resource
From the time when children enter the preteen years onward, pediatric medical decision-making can entail a complex interaction between child, parents, and pediatrician. When the child and parents disagree regarding medical decisions, the pediatrician has the challenging task of guiding the family to a final decision. Unresolved discord can affect family cohesiveness, patient adherence, and patient self-management. In this article, we outline 3 models for the pediatrician's role in the setting of decisional discord: deference, advocative, and arbitrative. In the deference model, the pediatrician prioritizes parental decision-making authority. In the advocative model, the pediatrician advocates for the child's preference in decision-making so long as the child's decision is medically reasonable. In the arbitrative model, the pediatrician works to resolve the conflict in a balanced fashion. Although each model has advantages and disadvantages, the arbitrative model should serve as the initial model in nearly all settings. The arbitrative model is likely to reach the most beneficial decision in a manner that maintains family cohesiveness by respecting the authority of parents and the developing autonomy of children. We also highlight, however, occasions when the deference or advocative models may be more appropriate. Physicians should keep all 3 models available in their professional toolkit and develop the wisdom to deploy the right model for each particular clinical situation.
Identifier
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10.1542/peds.2017-0234
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adolescent
Child
Consensus
Decision Making
Dissent And Disputes
DuBois J
Female
Feudtner C
Humans
Kodish E
Male
Mental Competency
Models Psychological
November 2017 List
Parent-child Relations
Parental Consent
Pediatricians
Pediatrics
Physician's Role
Sisk BA
Wolfe J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2017 List
Notes
<p>1873-6513<br />Marcus, Katherine L<br />Balkin, Emily M<br />Al-Sayegh, Hasan<br />Guslits, Elyssa<br />Blume, Elizabeth D<br />Ma, Clement<br />Wolfe, Joanne<br />Journal Article<br />United States<br />J Pain Symptom Manage. 2017 Sep 5. pii: S0885-3924(17)30463-3. doi: 10.1016/j.jpainsymman.2017.08.033.</p>
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
Patterns and Outcomes of Care in Children with Advanced Heart Disease Receiving Palliative Care Consultation
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
2017
Subject
The topic of the resource
Advanced Heart Disease; Goals Of Care; Pediatric End-of-life Care; Pediatric Palliative Care
Creator
An entity primarily responsible for making the resource
Marcus KL; Balkin E M; Al-Sayegh H; Guslits E; Blume E D; Ma C; Wolfe J
Description
An account of the resource
CONTEXT: While access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD). OBJECTIVES: To examine features of subspecialty PPC involvement for children with AHD. METHODS: Retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016. RESULTS: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/non-structural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year prior. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n=109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (p=0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (p=0.008). CONCLUSION: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes.
Identifier
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10.1016/j.jpainsymman.2017.08.033
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Advanced Heart Disease
Al-Sayegh H
Balkin E M
Blume E D
Goals Of Care
Guslits E
Journal of Pain and Symptom Management
Ma C
Marcus KL
November 2017 List
Pediatric End-of-life Care
Pediatric Palliative Care
Wolfe J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2017 List
URL Address
<a href="http://pediatrics.aappublications.org/content/early/2017/09/26/peds.2017-1662.abstract" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/early/2017/09/26/peds.2017-1662.abstract</a>
Dublin Core
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Title
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Disparities in Pediatric Palliative Care: An Opportunity to Strive for Equity
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Creator
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Bona K; Wolfe J
Description
An account of the resource
Abbreviations:EOL — end of lifePPC — pediatric palliative careThe importance of pediatric palliative care (PPC) for children with cancer has been broadly embraced over the last 2 decades in response to compelling evidence of high symptom burden and suffering throughout the continuum of care.1–3 Yet, how best to evaluate the impact of PPC remains a methodological challenge in a field focused on patient-reported outcomes, including symptom alleviation and goal-concordant care.In adult oncology, the benchmarking of palliative care has been facilitated by data demonstrating that end-of-life (EOL) care intensity (which is evaluable with administrative data, such as hospitalization and receipt of ICU care) is discordant with the wishes of adult patients with cancer.4,5 Similar benchmarking in pediatrics has been limited by an unknown correlation of care intensity with family goals and an absence of methodology for pediatric-specific administrative data. In this issue of Pediatrics, Johnston et al6 provide the first US population-based data … Address correspondence to Kira Bona, MD, MPH, Department of Pediatric Oncology, Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA 02115. E-mail: kira.bona{at}childrens.harvard.edu
Identifier
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<b></b><a class="aap-doi-text" href="https://doi.org/10.1542/peds.2017-1662" target="_blank" rel="noreferrer">10.1542/peds.2017-1662</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Bona K
November 2017 List
Pediatrics
Wolfe J
-
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 2017 List
Dublin Core
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Title
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Hospital Use In The Last Year Of Life For Children With Life-threatening Complex Chronic Conditions
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
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Ananth P; Melvin P; Feudtner C; Wolfe J; Berry JG
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Although many adults experience resource-intensive and costly health care in the last year of life, less is known about these health care experiences in children with life-threatening complex chronic conditions (LT-CCCs). We assessed hospital resource use in children by type and number of LT-CCCs. METHODS: A retrospective analysis of 1252 children with LT-CCCs, ages 1 to 18 years, who died in 2012 within 40 US children’s hospitals of the Pediatric Health Information System database. LT-CCCs were identified with International Classification of Diseases, 9th Revision, Clinical Modification codes. Using generalized linear models, we assessed hospital admissions, days, costs, and interventions (mechanical ventilation and surgeries) in the last year of life by type and number of LT-CCCs. RESULTS: In the last year of life, children with LT-CCCs experienced a median of 2 admissions (interquartile range [IQR] 1–5), 27 hospital days (IQR 7–84), and $142 562 (IQR $45 270–$410 087) in hospital costs. During the terminal admission, 76% (n = 946) were mechanically ventilated; 36% (n = 453) underwent surgery. Hospital use was greatest (P < .001) among children with hematologic/immunologic conditions (99 hospital days [IQR 51–146]; cost = $504 145 [IQR $250 147–$879 331]) and children with ≥3 LT-CCCs (75 hospital days [IQR 28–132]; cost = $341 222 [IQR $146 698–$686 585]). CONCLUSIONS: Hospital use for children with LT-CCCs in the last year of life varies significantly across the type and number of conditions. Children with hematologic/immunologic or multiple conditions have the greatest hospital use. This information may be useful for clinicians striving to improve care for children with LT-CCCs nearing the end of life.
Identifier
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10.1542/peds.2015-0260
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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
Ananth P
Berry JG
Feudtner C
July 2017 List
Melvin P
Pediatrics
Wolfe J
-
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
Dublin Core
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Title
A name given to the resource
Key Factors Affecting Dying Children And Their Families
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
2005
Subject
The topic of the resource
Bereavement; Family/px [psychology]; Palliative Care/st [standards]; Professional-family Relations; Quality Of Health Care; Terminal Care/st [standards]; Adolescent; Bereavement; Child; Communication; Decision Making; Humans; Only Child; Stress Psychological/et [etiology]; Terminal Care
Creator
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Hinds PS; Schum L; Baker J; Wolfe J
Description
An account of the resource
The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be the basis for health care providers' decisions to exit direct care roles. Thus, facilitating a "good death"-an obvious care priority for all involved with the dying child-ought also to be a priority for the health of bereaved families and affected health care providers. Making this a care priority is complicated by a serious lack of data, as details of the last hours or weeks of a dying child or adolescent's life are largely unknown. The purpose of this paper is to identify key factors that affect the course of dying children and adolescents and that of their bereaved survivors, and to link those key factors to needed research that could produce clinically relevant findings to improve the care of these patients. Key factors described here include suffering (physical, psychological, and spiritual), communication, decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and educational preparation of health care providers to give competent end-of-life care. [References: 75]
Identifier
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10.1089/jpm.2005.8.s-70
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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).
2005
Adolescent
Baker J
Bereavement
Child
Communication
Decision Making
Family/px [psychology]
Hinds PS
Humans
Journal of Palliative Medicine
May 2017 List
Only Child
Palliative Care/st [standards]
Professional-family Relations
Quality Of Health Care
Schum L
Stress Psychological/et [etiology]
Terminal Care
Terminal Care/st [standards]
Wolfe J
-
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
June 2017 List
URL Address
<a href="https://doi.org/10.1089/jpm.2016.0496" target="_blank" rel="noreferrer">https://doi.org/10.1089/jpm.2016.0496</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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Trends In Hospital Utilization And Costs Among Pediatric Palliative Care Recipients
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
Subject
The topic of the resource
Child; Hospital Costs; Hospital Utilization; Only Child; Palliative Care; Pediatric Palliative Care; Referral And Consultation
Creator
An entity primarily responsible for making the resource
Ananth P; Melvin P; Berry JG; Wolfe J
Description
An account of the resource
OBJECTIVE AND BACKGROUND: Few previous studies have explored how pediatric palliative care (PPC) influences hospital utilization. We evaluated this among PPC recipients in a single center. METHODS: This is a retrospective cohort study of 109 patients >/=2 years of age who received PPC consultation at a large quaternary children's hospital from April 2009 to September 2010. We assessed frequencies of hospital admissions and emergency department (ED) visits, use of intensive interventions, and hospital costs. Generalized estimating equations were used to compare outcomes in the two years before and after PPC consultation, stratifying by whether a patient survived two or more years following PPC enrollment. RESULTS: Median age at PPC consultation was 13 years (interquartile range 6-18); 56.0% were male (n = 61), 69.7% white non-Hispanic (n = 76). Fifty-nine percent (n = 64) of patients died during the study period. Overall, annual hospital admission rates decreased from 4.6 (95% confidence interval [CI] 4.0-5.4) before PPC consultation to 3.7 (95% CI 3.4-4.4) after (p = 0.025). Annual ED visits decreased from 0.9 (95% CI 0.7-1.2) to 0.6 (95% CI 0.4-0.8) (p = 0.030). Survivors had significantly decreased hospital admissions [rate ratio (RR) 0.57 (95% CI 0.45-0.73), p < 0.001] and ED visits [RR 0.33 (95% CI 0.20-0.54), p < 0.001]. Decedents had increased intensive care unit use (p = 0.029) but decreased operations (p = 0.002); survivors experienced no change in these outcomes after PPC consultation. Hospital costs remained stable for all (p = 0.929). DISCUSSION: PPC involvement may contribute to decreased hospital and ED use, without escalating costs. These outcomes are most evident in survivors. Hence, PPC may have a measurable long-term impact on hospital use in seriously ill children.
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<a href="https://doi.org/10.1089/jpm.2016.0496" target="_blank" rel="noreferrer">10.1089/jpm.2016.0496</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).
2017
Ananth P
Berry JG
Child
Hospital Costs
Hospital Utilization
Journal of Palliative Medicine
June 2017 List
Melvin P
Only Child
Palliative Care
Pediatric Palliative Care
Referral And Consultation
Wolfe J
-
Text
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Citation List Month
March 2017 List
Dublin Core
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Title
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Outcome Measurement For Children And Young People
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Journal Of Palliative Medicine
Date
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2017
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Harding R; Wolfe J; Baker J
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Baker J
Harding R
Journal of Palliative Medicine
March 2017 List
Wolfe J
-
Text
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Citation List Month
October 2017 List
Notes
<p>1099-0496</p><p>Dellon, Elisabeth</p><p>Goldfarb, Samuel B</p><p>Hayes, Don Jr</p><p>Sawicki, Gregory S</p><p>Wolfe, Joanne</p><p>Boyer, Debra</p><p>ORCID: http://orcid.org/0000-0003-4501-314X</p><p>Journal Article</p><p>United States</p><p>Pediatr Pulmonol. 2017 Aug 8. doi: 10.1002/ppul.23748.</p>
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Title
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Pediatric Lung Transplantation And End Of Life Care In Cystic Fibrosis: Barriers And Successful Strategies
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Pediatric Pulmonology
Date
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2017
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Cystic Fibrosis (cf); Lung Transplantation
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Dellon E; Goldfarb S B; Hayes D Jr; Sawicki G; Wolfe J; Boyer D
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Pediatric lung transplantation has advanced over the years, providing a potential life-prolonging therapy to patients with cystic fibrosis. Despite this, many challenges in lung transplantation remain and result in worse outcomes than other solid organ transplants. As CF lung disease progresses, children and their caregivers are often simultaneously preparing for lung transplantation and end of life. In this article, we will discuss the current barriers to success in pediatric CF lung transplantation as well as approaches to end of life care in this population.
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10.1002/ppul.23748
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Boyer D
Cystic Fibrosis (cf)
Dellon E
Goldfarb S B
Hayes D Jr
Lung Transplantation
October 2017 List
Pediatric Pulmonology
Sawicki G
Wolfe J
-
Text
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September 2017 List
Notes
<p>Using Smart Source Parsing 1-8), Date of Publication: 29 Jun 2017</p>
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Title
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Pediatric Cardiology Provider Attitudes About Palliative Care: A Multicenter Survey Study
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Pediatric Cardiology.
Date
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2017
Subject
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Cardiologist; Controlled Study; Heart Failure; Palliative Therapy; Pediatric Cardiology; Terminal Care; Cardiac Surgeon; Child; Clinical Study; Clinical Trial; Controlled Clinical Trial; Female; Human; Intensivist; Life Expectancy; Male; Medical School; Multicenter Study; Skill
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Balkin E M; Kirkpatrick J N; Kaufman BD; Swetz K M; Sleeper L A; Wolfe J; Blume E D
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While availability of palliative care consultation for children with advanced heart disease increases, little is known about cardiologist attitudes towards palliative care. We sought to describe perspectives of cardiologists regarding palliative care and to characterize their perceived competence in palliative care concepts. A cross-sectional survey of pediatric cardiologists and cardiac surgeons from 19 pediatric medical centers was performed. Overall response rate was 31% (183/589). Respondents had a median of 18 years of experience since medical school (range 2-49) and most practiced at academic centers (91%). Sixty-percent of respondents felt that palliative care consultations occur "too late" and the majority (85%) agreed that palliative care consultations are helpful. Barriers to requesting palliative care consultation were most frequently described as "referring to palliative care services too early will undermine parents' hope" (45%) and "concern that parents will think I am giving up on their child" (56%). Only 33% of cardiologists reported feeling "very" or "moderately" competent in prognosticating life expectancy while over 60% felt competent caring for children with heart disease around end of life, and nearly 80% felt competent discussing goals of care and code status. Greater perceived competence was associated with subspecialty (heart failure/intensivist vs. other) (OR 3.6, 95% CI 1.6-8.1, p = 0.003) and didactic training (OR 6.27, 95% CI 1.8-21.8, p = 0.004). These results underscore the need for further training in palliative care skills for pediatric cardiologists. Enhancing palliative care skills among cardiologists and facilitating partnership with subspecialty palliative care teams may improve overall care of children with advanced heart disease.
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10.1007/s00246-017-1663-0
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Balkin E M
Blume E D
Cardiac Surgeon
Cardiologist
Child
Clinical Study
Clinical Trial
Controlled Clinical Trial
Controlled Study
Female
Heart Failure
Human
Intensivist
Kaufman BD
Kirkpatrick J N
Life Expectancy
Male
Medical School
Multicenter Study
Palliative Therapy
Pediatric Cardiology
Pediatric cardiology.
September 2017 List
Skill
Sleeper L A
Swetz K M
Terminal Care
Wolfe J
-
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Title
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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.
Citation List Month
February 2017 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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Identifying Indicators Of Quality Pediatric Palliative Care: A Systematic Review
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Journal Of Pain And Symptom Management
Date
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2016
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Duc J; Widger K; Johnston K; Rapoport A; Siden H; Feudtner C; Wolfe J
Description
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Pediatric palliative care (PPC) is a relatively new but rapidly expanding specialty area with a variety of models of care provision. Identification and validation of quality indicators specific to PPC is essential to accurately monitor and assess the quality of care provided to children with life-threatening conditions and their families. Objectives: We conducted a systematic review to identify structure, process and outcome indicators of quality palliative care for children with life-threatening conditions and their families, and evaluate how these indicators are measured. Methods: We conducted our search using three electronic databases (CINAHL, MEDLINE, Embase) and a combination of the following key word terms: palliative care, healthcare quality, and quality assessment / improvement / measurement / metrics or preferred practices. Results were limited to studies in children, aged 0-18 years. Book chapters, theses and conference abstracts were excluded. Titles and abstracts were reviewed for relevance, followed by full article review for all retained articles. Two reviewers were involved at each level of review. Results: After removal of duplicates, 5909 titles and abstracts were screened for relevance, 1322 full articles were reviewed, and 121 articles were included in the final review. Key indicators included: availability of specialised PPC services (including bereavement care); proportion of children suffering from a variety of symptoms; proportion of families with documented discussions of goals of care; proportion of children dying in their preferred location; and proportion of parents satisfied with PPC service provision. Conclusions: There are a number of indicators and associated measures for assessing the quality of pediatric palliative care, however further work is required to validate these indicators and identify additional outcome indicators. Identification of key quality indicators provides a foundation for critical validation work and assessment of the impact of interventions designed to improve the quality of pediatric palliative care.
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DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.294
2016
Duc J
February 2017 List
Feudtner C
Johnston K
Journal of Pain and Symptom Management
Rapoport A
Siden H
Widger K
Wolfe J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2017 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/.
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End-of-life Care For Children With Medical Complexity: Does Advance Care Planning Matter?
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Critical Care Medicine
Date
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2016
Creator
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DeCourcey D; Silverman M; Oladunjoye A; Wolfe J
Description
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Learning Objectives: For many children with medical complexity (CMC), early death is an inevitable outcome of their illness, making advance care planning (ACP) a vital component in the optimal care of this population. Studies evaluating the relationship between access to ACP and important end of life (EOL) care outcomes for CMC are lacking. We evaluated whether ACP prior to death was associated with differences in parental perceptions of suffering, quality of life (QOL), and EOL care patterns for CMC. Methods: Single center cross sectional survey study of bereaved parents of CMC < 21 years of age who received care at Boston Children's Hospital and died between 2008 and 2015. Results: 108 bereaved parents responded (65% response rate) a mean of 4.3 years after their child's death. Median age at death was 10 years [1.3-19.7], 61% died in the hospital, 27% received intensive life-sustaining therapies in the last 2 days of life, and 66% parents reported having ACP for their child. Parents of CMC who had ACP were more likely to rate their child's QOL at EOL as good to excellent (60% vs 38%; p=0.04), more likely to feel prepared about what to expect at EOL (81% vs 36%; p<0.01), and more likely to have their child die in a preferred location (83% vs 65%; p=0.05). CMC who had ACP prior to death were more likely to have documented resuscitation orders (77% vs 33%; p< 0.01) and less likely to have intensive life-sustaining therapies in the last 2 days of life (19% vs 39%; p=0.03). ACP did not impact perceived suffering at the EOL (32% vs 32%; p=0.96). Conclusions: Access to ACP is associated with improved EOL care outcomes for CMC including superior quality of life, improved parental preparedness for death, increased documentation of resuscitation orders, decreased intensive life-sustaining therapies in the last 2 days of life, and a larger proportion of children dying in a preferred location. According to their parents, however, one third of children experience suffering at EOL and this experience is not impacted by ACP. Further studies are needed to evaluate communication around symptom management at the EOL.
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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).
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DOI: 10.1097/01.ccm.0000509223.50896.82
2016
Critical Care Medicine
DeCourcey D
February 2017 List
Oladunjoye A
Silverman M
Wolfe J