1
40
10
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Dublin Core
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Title
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July 2023 List
Text
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July List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.06.005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.06.005</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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Integration of Palliative Care in Hematopoietic Cell Transplant: Pediatric Patient and Parent Needs and Attitudes
Publisher
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Journal of Pain and Symptom Management
Date
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2023
Subject
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Caregivers; Hematopoietic Cell Transplantation; Palliative Care; Patients; Pediatrics; Quality of life
Creator
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Levine DR; Epperly R; Collins G; Talleur AC; Mandrell B; Pritchard M; Sarvode MS; Li C; Lu Z; Baker JN
Description
An account of the resource
Context Early integration of palliative care (PC) in hematopoietic cell transplantation (HCT) has demonstrated benefits, yet barriers remain, including perceived lack of patient/caregiver receptivity despite no data on attitudes toward PC and limited patient/caregiver reported outcomes in pediatric HCT. Objectives This study aimed to evaluate perceived symptom burden and patient/parent attitudes toward early PC integration in pediatric HCT. Methods Following IRB approval, consent/assent, eligible participants were surveyed at St. Jude Children's Research Hospital including English-speaking patients aged 10-17, 1month -1year from HCT, and their parents/primary-caregivers, as well as parent/primary-caregivers of living HCT recipients <age-10. Data were assessed for trends in response content frequencies, percentages, and associations. Results 81 participants, within one year of HCT, at St. Jude Children's Research Hospital were enrolled including: 36 parents of patients<age-10, 24 parents of patients ≥age-10, and 21 patients≥age-10. Most (65%) were 1-3 months from HCT. Analysis revealed high levels of perceived symptom suffering in the first month of HCT. 85.7% of patients and 73.4% of parents expressed that a-great-deal/a-lot of attention should be paid to quality-of-life from the start of HCT. Most respondents (patients-52.4/parents-50%) indicated they would likely have wanted early PC consult and very few (0%-patients/3.3%-parents) reported definite opposition to early PC involvement in HCT. Conclusion Our findings suggest that patient/family receptivity should not be a barrier to early PC in pediatric HCT; obtaining patient reported outcomes is a priority in the setting of high symptom burden; and robust quality-of-life directed care with early PC integration is both indicated and acceptable to patients/caregivers.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.06.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.06.005</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
Baker JN
Caregivers
Collins G
Epperly R
Hematopoietic Cell Transplantation
Journal of Pain and Symptom Management
July List 2023
Levine DR
Li C
Lu Z
Mandrell B
Palliative Care
Patients
Pediatrics
Pritchard M
Quality Of Life
Sarvode MS
Talleur AC
-
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 2023 List
Text
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Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.1016/S2666-6367%2823%2900237-3" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/S2666-6367%2823%2900237-3</a>
Dublin Core
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Title
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Impact of Palliative Care Integration on End-of-Life Outcomes in Pediatric Hematopoietic Cell Transplant
Publisher
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Transplantation and Cellular Therapy
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
hematopoietic cell; palliative therapy; transplantation; anxiety; appetite; bleeding; bodily secretions; child; conference abstract; controlled study; coughing; data analysis; demographics; diarrhea; distress syndrome; do not resuscitate order; documentation; dyspnea; edema; fatigue; female; fever; hospice; human; human cell; intubation; irritability; lifespan; major clinical study; male; medical record review; nausea and vomiting; pain; Palliative Care; quality of life; retrospective study; surgery; survival; terminal care
Creator
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Levine DR; Cuviello A; Baker JN
Description
An account of the resource
Introduction: Pediatric hematopoietic cell transplant (HCT) confers a high risk of morbidity and mortality and palliative care (PC) integration in HCT may improve outcomes. PC services can aid in advanced care planning, symptom management, and wholistic support for patients and their families, especially at end-of-life, yet little empiric data exists regarding the impact of PC involvement in pediatric HCT. Objective(s): Compare deceased pediatric HCT patients with and without PC involvement to identify differences in end-of-life characteristics. Method(s): Retrospective medical record review was performed for all HCT patients at St. Jude Children's Research Hospital who died between March 2008 and October 2017 (N=160). Variables collected included: demographics, PC involvement, symptom and end-of-life characteristics. Data analysis included descriptive statistics and tests of significance. Result(s): Of 160 deceased HCT patients PC involvement was present in 115 (71.9%) compared to 45 (28.1%) with no PC. No significant differences in demographic characteristics were noted between the 2 groups. Longer survival duration from HCT to death was noted in patients who received PC whose mean death was 305.5 days after HCT (median 189, range 10-2,834) as compared to a mean of 228.8 days between HCT and death in the no PC group (median 129, range 13-1,444) (p=0.047). Significant differenced were noted in which patients with PC involvement were more likely to have a DNR order (PC n=76 74.5%, NPC n=16 48.5% p=.005), less likely to be intubated in the last 24 hours of life (PC n=36 34%, NPC n=21 60% p=.006), and more likely to have been enrolled in hospice (PC n=38 33%, NPC n=4 8.9% p=.002). Documentation of distressing symptoms in the last month of life was higher in the PC group with notable symptom burden in both groups. Most frequently documented symptoms overall were pain (95.3%), fatigue (83.2%), fever (80.0%), edema (78.0%), bleeding (66.9%), diarrhea (65.6%), poor appetite (65.3%), anxiety (63.4%), nausea/ vomiting (58.9%), dyspnea (58.5%), secretions (57.4%), irritability (48.0%), and cough (47.5%). Conclusion(s): PC integration in pediatric HCT likely results in improved end-of-life care by way of enhanced advanced care planning, decreased intubation and resuscitative events, and increased hospice enrollment. PC integration in HCT does not lead to shorter life spans and may improve quality of life via enhanced symptom recognition and management.Copyright © 2023 American Society for Transplantation and Cellular Therapy
Identifier
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<a href="http://doi.org/10.1016/S2666-6367%2823%2900237-3" target="_blank" rel="noreferrer noopener">10.1016/S2666-6367%2823%2900237-3</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
anxiety
Appetite
Baker JN
bleeding
bodily secretions
Child
conference abstract
Controlled Study
coughing
Cuviello A
Data Analysis
Demographics
Diarrhea
Distress Syndrome
do not resuscitate order
Documentation
Dyspnea
edema
Fatigue
Female
fever
hematopoietic cell
Hospice
Human
human cell
Intubation
Irritability
July List 2023
Levine DR
Lifespan
Major Clinical Study
Male
Medical Record Review
Nausea And Vomiting
Pain
Palliative Care
Palliative Therapy
Quality Of Life
Retrospective Study
Surgery
Survival
Terminal Care
Transplantation
Transplantation and Cellular Therapy
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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
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April 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.128" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2017.12.128</a>
Dublin Core
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Title
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Incorporating Bereaved Parents as Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care (FR452)
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
2018
Subject
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terminal care; Bereavement; Terminal Care
Creator
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Snaman JM; Kaye E; Levine DR; Clark L; Wilcox R; Cunningham MJ; Baker JN
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.128" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.128</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
April 2018 List
Baker JN
Bereavement
Clark L
Cunningham MJ
Journal of Pain and Symptom Management
Kaye E
Levine DR
Snaman JM
Terminal Care
Wilcox R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.025" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2017.12.025</a>
Dublin Core
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Title
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Family Satisfaction with Symptom Management Practices and Child Comfort During Pediatric Hematopoietic Stem Cell Transplant (TH320C)
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
2018
Subject
The topic of the resource
Stem Cell Transplantation; Hematopoietic Stem Cells
Creator
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Ullrich C; Levine DR; Li Anran; Ma Clement; Wolfe J; Holder R
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.025" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.025</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
April 2018 List
Hematopoietic Stem Cells
Holder R
Journal of Pain and Symptom Management
Levine DR
Li Anran
Ma Clement
Stem Cell Transplantation
Ullrich C
Wolfe J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.26089" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.26089</a>
Dublin Core
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Title
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Going Straight to the Source: A Pilot Study of Bereaved Parent-facilitated Communication Training for Pediatric Subspecialty Fellows
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
Bereavement; Pilot Projects
Creator
An entity primarily responsible for making the resource
Snaman JM; Kaye E; Cunningham MJ; Sykes A; Levine DR; Mahoney D; Baker JN
Description
An account of the resource
BACKGROUND: Medical trainees consistently report suboptimal instruction and poor self-confidence in communication skills. Despite this deficit, few established training programs provide comprehensive, pediatric-specific communication education, particularly in the provision of "bad news." To our knowledge, no programs currently use bereaved parent educators to facilitate communication training for pediatric subspecialty trainees. PROCEDURE: The authors designed and implemented a pilot communication training seminar in which bereaved parent educators and faculty facilitators led small groups in interactive, role-play scenarios. Surveys incorporating a retrospective preprogram assessment item to account for response-shift bias were used to assess short- and long-term changes in trainee comfort with delivering "bad news." RESULTS: Fifteen pediatric fellowship trainees participated in the communication seminar; complete data were available for 12 participants. After accounting for response-shift bias, participants reported significant improvement in overall preparedness, breaking bad news to a patient and family, and including the adolescent or young adult patient in conversations. Additionally, participants reported a significant improvement in their ability to address a patient and family's need for information, emotional suffering at the end of life (EOL), if and when a patient should be included in the conversation, and EOL care decisions. The participant's self-perceived improvement in comfort and preparedness persisted over time. CONCLUSIONS: Communication training for pediatric subspecialty trainees using bereaved parent educators is feasible and effective. Both medical trainee and bereaved parent participants benefited from involvement in this pilot study. Further iterations of this training will be modified to assess objective measures of improvement in trainees' communication skills.
Identifier
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<a href="http://doi.org/10.1002/pbc.26089" target="_blank" rel="noreferrer noopener">10.1002/pbc.26089</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).
2018
April 2018 List
Baker JN
Bereavement
Cunningham MJ
Kaye E
Levine DR
Mahoney D
Pediatrics
Pilot Projects
Snaman JM
Sykes A
-
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/10.1089/jpm.2015.0253" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2015.0253</a>
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Title
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Parental Perspectives of Communication at the End of Life at a Pediatric Oncology Institution
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
2016
Creator
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Snaman JM; Torres C; Duffy B; Levine DR; Gibson DV; Baker JN
Description
An account of the resource
BACKGROUND: The interaction of health care providers and hospital staff with patients and families at the end of life affects the parental grief experience. Both verbal and nonverbal communication are key components of this interaction. OBJECTIVE: The study objective was to explore the communication between hospital staff members and patients and families at the time of patients' health decline near the end of life. METHODS: Twelve bereaved parents participated in a focus group. Semantic content analysis was used to analyze the transcript. RESULTS: Parents' responses to the prompt about typical ways the medical team communicated yielded 109 codes, which were grouped into 12 themes. The most common themes were "patient inclusion" and "explanation of medical plan," both used in 17% of responses. Responses to the prompt about positive and negative aspects of communication generated 208 codes, yielding 15 different themes. The most common theme about positive communication was the "strong relationship between family and staff." The theme "variations in care with a negative impact" was used most frequently in describing negative communication. CONCLUSION: This study helps to identify techniques that should be used by clinicians as they work with children with cancer and their families, particularly including patients in treatment decisions, ongoing relationship building, communicating with caring and empathy, using an interdisciplinary team for additional support, and pairing bad news with a plan of action.
2016-03
Identifier
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<a href="http://doi.org/10.1089/jpm.2015.0253" target="_blank" rel="noreferrer">10.1089/jpm.2015.0253</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
2016
Backlog
Baker JN
Duffy B
Gibson DV
Journal Article
Journal of Palliative Medicine
Levine DR
Snaman JM
Torres 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/10.6004/jnccn.2016.0076" target="_blank" rel="noreferrer">http://doi.org/10.6004/jnccn.2016.0076</a>
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Title
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Integrating Palliative Care in Pediatric Oncology: Evidence for an Evolving Paradigm for Comprehensive Cancer Care
Publisher
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Journal Of The National Comprehensive Cancer Network
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
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Levine DR; Johnson LM; Snyder A; Wiser RK; Gibson D; Kane JR; Baker JN
Description
An account of the resource
BACKGROUND: The demonstrated benefit of integrating palliative care (PC) into cancer treatment has triggered an increased need for PC services. The trajectory of integrating PC in comprehensive cancer centers, particularly pediatric centers, is unknown. We describe our 8-year experience of initiating and establishing PC with the Quality of Life Service (QoLS) at St. Jude Children's Research Hospital. METHODS: We retrospectively reviewed records of patients seen by the QoLS (n=615) from March 2007 to December 2014. Variables analyzed for each year, using descriptive statistics, included diagnostic groups, QoLS encounters, goals of care, duration of survival, and location of death. RESULTS: Total QoLS patient encounters increased from 58 (2007) to 1,297 (2014), new consults increased from 17 (2007) to 115 (2014), and mean encounters per patient increased from 5.06 (2007) to 16.11 (2014). Goal of care at initial consultation shifted from primarily comfort to an increasing goal of cure. The median number of days from initial consult to death increased from 52 days (2008) to 223 days (2014). A trend toward increased outpatient location of death was noted with 42% outpatient deaths in 2007, increasing to a majority in each subsequent year (range, 51%-74%). Hospital-wide, patients receiving PC services before death increased from approximately 50% to nearly 100%. CONCLUSIONS: Since its inception, the QoLS experienced a dramatic increase in referrals and encounters per patient, increased use by all clinical services, a trend toward earlier consultation and longer term follow-up, increasing outpatient location of death, and near-universal PC involvement at the end-of-life. The successful integration of PC in a comprehensive cancer center, and the resulting potential for improved care provision over time, can serve as a model for other programs on a broad scale.
2016-06
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.6004/jnccn.2016.0076" target="_blank" rel="noreferrer">10.6004/jnccn.2016.0076</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
2016
Backlog
Baker JN
Gibson D
Johnson LM
Journal Article
Journal Of The National Comprehensive Cancer Network
Kane JR
Levine DR
Snyder A
Wiser RK
-
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/10.1002/cncr.29230" target="_blank" rel="noreferrer">http://doi.org/10.1002/cncr.29230</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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Does phase 1 trial enrollment preclude quality end-of-life care? Phase 1 trial enrollment and end-of-life care characteristics in children with cancer
Publisher
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Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Oncology at EOL
Creator
An entity primarily responsible for making the resource
Levine DR; Johnson LM; Mandrell BN; Yang J; West NK; Hinds PS; Baker JN
Description
An account of the resource
BACKGROUND: End-of-life care (EOLC) discussions and treatment-related decisions, including phase 1 trial enrollment, in patients with incurable disease are complex and can influence the quality of EOLC received. The current study was conducted in pediatric oncology patients to determine whether end-of-life characteristics differed between those who were and were not enrolled in a phase 1 trial. METHODS: The authors reviewed the medical records of 380 pediatric oncology patients (aged <22 years at the time of death) who died during a 3.5-year period. Of these, 103 patients with hematologic malignancies were excluded. A total of 277 patients with a diagnosis of a brain tumor or other solid tumor malignancy were divided into 2 groups based on phase 1 trial enrollment: a phase 1 cohort (PIC; 120 patients) and a non-phase 1 cohort (NPIC; 157 patients). The EOLC characteristics of these 2 cohorts were compared using regression analysis and chi-square testing. RESULTS: A comparison of patients in the PIC and NPIC revealed no significant differences in either demographic characteristics (including sex, race, religious affiliation, referral origin, diagnosis, or age at diagnosis, with the exception of age at the time of death [P =.03]) or in EOLC indices (such as use or timing of do not attempt resuscitation orders, hospice use or length of stay, forgoing life-sustaining therapies, location of death, time from first EOLC discussion to death, and total number of EOLC discussions). CONCLUSIONS: The results of the current study of a large cohort of deceased pediatric cancer patients indicate that enrollment on a phase 1 trial does not affect EOLC characteristics, suggesting that quality EOLC can be delivered regardless of phase 1 trial participation. Cancer 2015;121:1508-1512. © 2014 American Cancer Society.
2015-05
Identifier
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<a href="http://doi.org/10.1002/cncr.29230" target="_blank" rel="noreferrer">10.1002/cncr.29230</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
2015
Backlog
Baker JN
Cancer
Hinds PS
Johnson LM
Journal Article
Levine DR
Mandrell BN
Oncology at EOL
West NK
Yang 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
Backlog
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2015.03.008" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2015.03.008</a>
Dublin Core
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Title
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Patterns of End-of-Life Care in Children with Advanced Solid Tumor Malignancies Enrolled on a Palliative Care Service
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
2015
Creator
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Vern-Gross Tamara Z; Lam CG; Graff Z; Singhal S; Levine DR; Gibson D; Sykes AD; Anghelescu DL; Yuan Y; Baker JN
Description
An account of the resource
CONTEXT: Pediatric patients with solid tumors can have a significant symptom burden that impacts quality of life (QoL) and end-of-life care needs. OBJECTIVES: We evaluated outcomes and symptoms in children with solid tumors and compared patterns of end-of-life care after implementation of a dedicated institutional pediatric palliative care (PC) service. METHODS: We performed a retrospective cohort study of children with solid tumors treated at St. Jude Children's Research Hospital, before and after implementation of the institutional QoL/PC service in January 2007. Patients who died between July 2001 and February 2005 (historical cohort; n = 134) were compared with those who died between January 2007 and January 2012 (QoL/PC cohort; n = 57). RESULTS: Median time to first QoL/PC consultation was 17.2 months (range 9-33). At consultation, 60% of children were not receiving or discontinued cancer-directed therapy. Within the QoL/PC cohort, 54 patients had documented symptoms, 94% required intervention for ≥3 symptoms, and 76% received intervention for ≥5 symptoms. Eighty-three percent achieved their preferred place of death. Compared with the historical cohort, the QoL/PC cohort had more end-of-life discussions per patient (median 12 vs. 3; P < 0.001), earlier end-of-life discussions, with longer times before do-not-resuscitate orders (median 195 vs. 2 days; P < 0.001), and greater hospice enrollment (71% vs. 46%, P = 0.002). CONCLUSION: Although children with solid tumor malignancies may have significant symptom burden toward the end of life, positive changes were documented in communication and in places of care and death after implementation of a pediatric PC service.
2015-04
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2015.03.008" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2015.03.008</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
2015
Anghelescu DL
Backlog
Baker JN
Gibson D
Graff Z
Journal Article
Journal of Pain and Symptom Management
Lam CG
Levine DR
Singhal S
Sykes AD
Vern-Gross Tamara Z
Yuan Y
-
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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Oncology
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Citation List Month
Oncology 2017 List
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<a href="http://doi.org/10.1001/jamaoncol.2017.0368" target="_blank" rel="noreferrer">http://doi.org/10.1001/jamaoncol.2017.0368</a>
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Title
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Patients' and Parents' Needs, Attitudes, and Perceptions About Early Palliative Care Integration in Pediatric Oncology
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Jama Oncology
Date
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2017
Creator
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Levine DR; Mandrell BN; Sykes A; Pritchard M; Gibson D; Symons HJ; Wendler D; Baker JN
Description
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Importance: Early palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients and their families may not need or want palliative care involvement early in the disease trajectory. Objective: To determine the perception of symptom burden early in treatment and assess attitudes toward early integration of palliative care in pediatric oncology patient-parent pairs. Design, Setting, and Participants: Novel but pretested survey tools were administered to 129 patient-parent dyads of hospital-based pediatric oncology ambulatory clinics and inpatient units between September 2011 and January 2015. All patient participants were aged between 10 and 17 years and were diagnosed as having an oncologic condition 1 month to 1 year before enrollment. Both the patient and the parent in the dyad spoke English, and all participating parents provided written informed consent. A convenience sample was used for selection, with participants screened when otherwise presenting at a participating site. A total of 280 eligible participants were approached for study inclusion, 258 of whom were enrolled in the study (92.1% positive response-rate). Main Outcomes and Measures: Degree of perceived suffering from early symptom-related causes, attitudes toward early palliative care integration, and patient-parent concordance. Statistical analysis included descriptive statistics, calculation of concordance, McNemar test results, and Cochran-Armitage trend test results. Results: Of the 129 patients in the dyads, 68 were boys, and 61 girls; of the 129 parents, 15 were men, and 114 women. Patients reported the following symptoms in the first month of cancer therapy: nausea (n = 109; 84.5%), loss of appetite (n = 97; 75.2%), pain (n = 96; 74.4%), anxiety (n = 77; 59.7%), constipation (n = 69; 53.5%), depression (n = 64; 49.6%), and diarrhea (n = 52; 40.3%). A large proportion of those reporting suffering indicated substantial suffering severity from specific symptoms (ie, a great deal or a lot) including nausea, 52.3% (57 of 109), loss of appetite, 50.5% (49 of 97), constipation 30.4% (21 of 69), pain 30.2% (29 of 96), anxiety 28.6% (22 of 77), depression 28.1% (18 of 64), and diarrhea 23.1% (12 of 52). Few children and parents expressed opposition to early palliative care involvement (2 [1.6%] and 8 [6.2%]) or perceived any detrimental effects on their relationship with their oncologist (6 [4.7%] and 5 [3.9%]), loss of hope (3 [2.3%] and 10 [7.8%]), or therapy interference (3 [2.3%] and 2 [1.6%], respectively). Intradyad concordance was low overall: 26% to 29% for exact concordance and 40% to 69% for agreement within 1 response category. Significant differences in patient-parent attitudes toward aspects of early palliative care included child participants being more likely than their parents (40.3% [n = 52] vs 17.8% [n = 23]) to indicate that palliative care would have been helpful for treating their symptoms (P < .001). Conclusions and Relevance: Pediatric oncology patients experience a high degree of symptom-related suffering early in cancer therapy, and very few patients or parents in this study expressed negative attitudes toward early palliative care. Our findings suggest that pediatric oncology patients and families might benefit from, and are not a barrier to, early palliative care integration in oncology.
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<a href="http://doi.org/10.1001/jamaoncol.2017.0368" target="_blank" rel="noreferrer">10.1001/jamaoncol.2017.0368</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
Baker JN
Gibson D
Jama Oncology
Levine DR
Mandrell BN
Oncology 2017 List
Pritchard M
Sykes A
Symons HJ
Wendler D