1
40
26
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Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1186/s12906-023-03924-x" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12906-023-03924-x</a>
Dublin Core
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Title
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Supportive care for cancer-related symptoms in pediatric oncology: a qualitative study among healthcare providers
Publisher
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BMC Complementary Medicine and Therapies
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Canada; United States; Germany; childhood cancer; adult; article; cancer chemotherapy; female; human; male; quality of life; palliative therapy; aged; education; Netherlands; anxiety; philosophy; Norway; clinical article; interview; content analysis; health care personnel; qualitative research; cancer therapy; insomnia; fatigue; acute lymphoblastic leukemia; leukemia; constipation; nausea; semi structured interview; vomiting; alternative medicine; nurse; music therapy; dietitian; acupuncture; aromatherapy; integrative medicine; massage; professional practice; acupressure; play therapy; psychodrama; vincristine
Creator
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Mora DC; Jong MC; Quandt SA; Arcury TA; Kristoffersen AE; Stub T
Description
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Background: The aim of this study is to gain insight into the clinical experiences and perceptions that pediatric oncology experts, conventional healthcare providers, and complementary and alternative medicine (CAM) providers in Norway, Canada, Germany, the Netherlands, and the United States have with the use of supportive care, including CAM among children and adolescents with cancer. Method(s): A qualitative study was conducted using semi-structured in-depth interviews (n = 22) with healthcare providers with clinical experience working with CAM and/or other supportive care among children and adolescents with cancer from five different countries. Participants were recruited through professional associations and personal networks. Systematic content analysis was used to delineate the main themes. The analysis resulted in three themes and six subthemes. Result(s): Most participants had over 10 years of professional practice. They mostly treated children and adolescents with leukemia who suffered from adverse effects of cancer treatment, such as nausea and poor appetite. Their priorities were to identify the parents' treatment goals and help the children with their daily complaints. Some modalities frequently used were acupuncture, massage, music, and play therapy. Parents received information about supplements and diets in line with their treatment philosophies. They received education from the providers to mitigate symptoms and improve the well-being of the child. Conclusion(s): Clinical experiences of pediatric oncology experts, conventional health care providers, and CAM providers give an understanding of how supportive care modalities, including CAM, are perceived in the field and how they can be implemented as adaptational tools to manage adverse effects and to improve the quality of life of children diagnosed with cancer and the families.Copyright © 2023, The Author(s).
Identifier
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<a href="http://doi.org/10.1186/s12906-023-03924-x" target="_blank" rel="noreferrer noopener">10.1186/s12906-023-03924-x</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
2023 SE3 - Oncology
acupressure
Acupuncture
Acute Lymphoblastic Leukemia
Adult
Aged
alternative medicine
anxiety
Arcury TA
Aromatherapy
Article
BMC Complementary Medicine and Therapies
Canada
Cancer Chemotherapy
Cancer Therapy
Childhood Cancer
Clinical Article
Constipation
Content Analysis
dietitian
Education
Fatigue
Female
Germany
Health Care Personnel
Human
insomnia
Integrative Medicine
Interview
Jong MC
Kristoffersen AE
Leukemia
Male
Massage
Mora DC
Music Therapy
Nausea
Netherlands
Norway
Nurse
Palliative Therapy
Philosophy
Play Therapy
Professional Practice
psychodrama
Qualitative Research
Quality Of Life
Quandt SA
Semi Structured Interview
Stub T
United States
vincristine
Vomiting
-
Dublin Core
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Title
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October 2023 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
October List 2023
URL Address
<a href="http://doi.org/10.1089/jpm.2023.0072" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0072</a>
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Title
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Evaluating a Pediatric Palliative Care Elective Rotation Through Prompted Reflective Writing and Aligning with Competencies
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
2023
Subject
The topic of the resource
fatigue; Palliative Care; child; article; human; United States; population health; palliative therapy; hospice; resident; clinical evaluation; physical examination; intestine obstruction; medical education; Rotation; learning; writing; accreditation; professionalism; rotation; inductive reasoning
Creator
An entity primarily responsible for making the resource
Crawford C; Arevalo Soriano T; Lu S; Rubenstein J; Jarrell JA
Description
An account of the resource
Background: Hospice and palliative medicine is important in the education of pediatric residents. Little is known about if and how residents' learnings during a pediatric palliative care elective fulfill core competencies and Pediatrics subcompetencies as set forth by the Accreditation Council for Graduate Medical Education (ACGME) and published subspecialty competencies for residents in pediatric hospice and palliative medicine (pHPM). Objective(s): To evaluate what residents are learning on a four-week pediatric palliative care elective rotation at a single institution and how these learnings fulfill ACGME and pHPM competencies. Setting/Subjects: Prompted, written reflections were collected from residents completing a pediatric palliative care rotation at a large, urban academic center in the United States between academic years 2016-2017 and 2020-2021. Measurements: A qualitative, inductive reasoning approach was used to analyze reflections for emergent themes and codes. A deductive approach was used to map resulting codes to ACGME core competencies, Pediatric subcompetencies, and pHPM competencies. Result(s): Twenty-five resident reflections were collected. Inductive analysis revealed three primary themes and 102 codes. These codes were mapped to all six ACGME core competencies and mapped to most Pediatric subcompetencies with the exception of performing a physical examination, organizing and prioritizing patients, diagnostic evaluation, and community and population health. Codes mapped to most pHPM competencies with the exception of two symptom-based competencies, malignant bowel obstruction and severe fatigue. Conclusion(s): Residents' written reflections following a pediatric palliative care elective rotation demonstrated robust learnings that fulfill many core, specialty, and subspecialty competencies, particularly those that relate to patient- and family-centered care, communication, professionalism, and systems-based practice.
Identifier
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<a href="http://doi.org/10.1089/jpm.2023.0072" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0072</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Accreditation
Arevalo Soriano T
Article
Child
clinical evaluation
Crawford C
Fatigue
Hospice
Human
inductive reasoning
Intestine Obstruction
Jarrell JA
Journal of Palliative Medicine
Learning
Lu S
Medical Education
October List 2050
Palliative Care
Palliative Therapy
physical examination
Population Health
professionalism
Resident
Rotation
Rubenstein J
United States
writing
-
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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August 2023 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
August List 2023
URL Address
<a href="http://doi.org/10.1542/peds.2022-059122" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2022-059122</a>
Dublin Core
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Title
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The FATHER Model of Loss and Grief After Child's Life-Limiting Illness
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
mental health; Child; child; article; female; human; male; palliative therapy; practice guideline; Medline; anxiety; systematic review; grief; guilt; ethnography; Cinahl; Only Child; Scopus; fatigue; deterioration; injury; mother; meta analysis; quality control; ScienceDirect; ambivalence; father; directory; disenfranchised grief; Preferred Reporting Items for Systematic Reviews and Meta-Analyses; unresolved grief
Creator
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Postavaru GI; Hamilton J; Davies S; Swaby H; Michael A; Swaby R; Mukaetova-Ladinska EB
Description
An account of the resource
Context: Loss of a child to a life-limiting condition (LLC) is 1 of the most traumatic life events for parents. Research focusing on fathers' experiences is in its infancy. Objectives: Using a meta-ethnographic approach, we systematically reviewed the literature around fathers' predeath and postdeath experiences of loss and grief. Data sources: We searched Medline, Scopus, Cumulative Index to Nursing and Allied Health Literature, and Science Direct, and used the meta-ethnography reporting guidelines; the Preferred Reporting Items for Systematic Reviews and Meta-Analyses; and sampling strategy, type of study, approaches, range of years, limits, inclusion and exclusions, terms used, and electronic sources recommendations. Study selection: We used the Guide to Children's Palliative Care and the directory of LLCs to select qualitative articles published up until the end of March 2023 that described fathers' predeath and postdeath experiences of loss and grief after their child's LLC. We excluded studies that failed to differentiate outcomes between mothers and fathers. Data extraction: Extracted data included study details, participants' characteristics, response rate, source of participants, method and time of data collection, children's characteristics, and quality assessment. First-order and second-order data were also extracted. Results: Forty studies informed a FATHER model of loss and grief. This highlights both similarities (ambivalence, trauma responses, fatigue, anxiety, unresolved grief, guilt) and distinct features defining the predeath and postdeath experiences of loss and grief. Limitations: There was a bias toward greater mother participation in research. Specific categories of fathers remain underrepresented in palliative care literature. Conclusions: Many fathers experience disenfranchised grief and deterioration in mental health after a child's diagnosis and postdeath. Our model opens possibilities for personalized clinical support in the palliative care system for fathers.
Identifier
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<a href="http://doi.org/10.1542/peds.2022-059122" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-059122</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).
2023
ambivalence
anxiety
Article
August List 2045
Child
Cinahl
Davies S
Deterioration
directory
disenfranchised grief
ethnography
Father
Fatigue
Female
Grief
Guilt
Hamilton J
Human
injury
Male
Medline
Mental Health
meta analysis
Michael A
Mother
Mukaetova-Ladinska EB
Only Child
Palliative Therapy
Pediatrics
Postavaru GI
Practice Guideline
Preferred Reporting Items for Systematic Reviews and Meta-Analyses
quality control
ScienceDirect
Scopus
Swaby H
Swaby R
Systematic Review
unresolved grief
-
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
June 2023 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
June 2022 List
URL Address
<a href="https://www.ejgm.co.uk/download/the-efficacy-of-educational-interventions-on-neonatal-intensive-care-unit-nurses-knowledge-and-12902.pdf">https://www.ejgm.co.uk/download/the-efficacy-of-educational-interventions-on-neonatal-intensive-care-unit-nurses-knowledge-and-12902.pdf</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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The efficacy of educational interventions on neonatal intensive care unit nurses knowledge and attitude toward neonatal palliative care
Publisher
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Electronic Journal of General Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
fatigue; Palliative Care; Infant Newborn; adult; article; controlled study; female; hospital admission; human; male; death; family; pain; chronic pain; palliative therapy; neonatal intensive care unit; nursing; prognosis; grief; anxiety; morphine; human experiment; nurse; scoring system; aggression; questionnaire; demographics; sedation; nausea and vomiting; respiration depression; care behavior; Jordan; pretest posttest design; work experience; opiate; attitude; education program; knowledge; adjuvant therapy; analgesic activity; cocaine; drowsiness; drug dependence; educational status; electrolyte disturbance; emotional deprivation; intestine; marriage; neonatal intensive care unit attitude scale; pethidine
Creator
An entity primarily responsible for making the resource
Abuhammad S; Elayyan M; El-Bashir M
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).
Identifier
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<a href="https://www.ejgm.co.uk/download/the-efficacy-of-educational-interventions-on-neonatal-intensive-care-unit-nurses-knowledge-and-12902.pdf">10.29333/ejgm/12902</a>
2023
Abuhammad S
adjuvant therapy
Adult
Aggression
analgesic activity
anxiety
Article
Attitude
care behavior
Chronic Pain
cocaine
Controlled Study
Death
Demographics
drowsiness
drug dependence
Education Program
Educational Status
El-Bashir M
Elayyan M
electrolyte disturbance
Electronic Journal of General Medicine
emotional deprivation
Family
Fatigue
Female
Grief
Hospital Admission
Human
Human Experiment
Infant Newborn
Intestine
Jordan
June 2022 List
Knowledge
Male
Marriage
Morphine
Nausea And Vomiting
Neonatal Intensive Care Unit
neonatal intensive care unit attitude scale
Nurse
Nursing
Opiate
Pain
Palliative Care
Palliative Therapy
pethidine
pretest posttest design
Prognosis
Questionnaire
Respiration Depression
scoring system
Sedation
work experience
-
Dublin Core
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Title
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July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 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>
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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
An unambiguous reference to the resource within a given context
<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>
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).
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
-
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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January 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.09.018" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.09.018</a>
Dublin Core
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Title
A name given to the resource
Safety and Feasibility of Home Transfusions in Pediatric Palliative Care: A Preliminary Report
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management.
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
fatigue; Pediatric palliative care; symptom management; home transfusion support; thrombocytopenia
Creator
An entity primarily responsible for making the resource
De Zen L; Del Rizzo I; Vendrametto V; Nicolardi F; Vaccher S; Dall'Amico R; Rabusin M; Barbi E; Passone E
Description
An account of the resource
Background: While hematological symptoms are considered difficult to manage in a Pediatric Palliative Care setting, home may still represent a safe and convenient place for transfusions in patients with advanced malignancy or chronic conditions. This research focuses on the safety and feasibility of a home transfusion program. Method(s): This is a case series of patients between 0 and 18 years diagnosed with advanced malignancy or incurable chronic conditions and eligible to Pediatric Palliative Care who received home platelet or packed red cell transfusions. For all patients, we recorded adverse events such as acute hemolytic reactions, allergic reactions, or any emergency condition requiring hospital admission, equipment failure, blood product transport or storage errors, errors in patient identification, and personnel safety issues. We explored parental satisfaction with a Likert-type questionnaire and short open questions. Result(s): We reviewed 101 transfusion procedures for six patients in Pediatric Palliative Care performed by the Regional Pediatric Palliative Care network between 2014 and 2020. We did not report any adverse effects. Families reported satisfaction and a sense of safety and positively evaluated the opportunity of having transfusion at home to minimize the disruption in everyday life. The cost analysis resulted in a consistent saving for the Regional Health System. Conclusion(s): This study supports the safety and feasibility of home transfusion in Pediatric Palliative Care. Copyright © 2021 American Academy of Hospice and Palliative Medicine
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.09.018" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.09.018</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).
2021
Barbi E
Dall'Amico R
De Zen L
Del Rizzo I
Fatigue
home transfusion support
January 2022 List
Journal of Pain and Symptom Management.
Nicolardi F
Passone E
Pediatric Palliative Care
Rabusin M
Symptom Management
thrombocytopenia
Vaccher S
Vendrametto V
-
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
2020 Developing World 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
Developing World 2020 List
URL Address
<a href="http://doi.org/10.1007/978-3-030-25804-7_15" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/978-3-030-25804-7_15</a>
Dublin Core
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Title
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Pediatric oncology nursing research in low- and middle-income countries
Publisher
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Pediatric Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
fatigue; stress; human; palliative therapy; priority journal; cancer survival; health care personnel; pain; quality of life; posttraumatic stress disorder; risk factor; low income country; middle income country; cancer incidence; nutrition; caregiver; sepsis; treatment response; infant mortality; geographic distribution; malnutrition; high income country; methodology; nursing care; pediatric oncology nursing; caregiver burden; gross national income; Burkitt lymphoma; lifestyle; alternative medicine; caregiver burnout; cytotoxicity; economic status; immune status; Impact of Events Scale; Kaposi sarcoma; nurse training; nursing practice; nursing science; Southeast Asian; Southern Europe; traditional medicine
Creator
An entity primarily responsible for making the resource
Challinor J M; Day S W; Afungchwi G M; Alqudimat M R
Description
An account of the resource
Cancer and other non-communicable diseases are a growing public health issue now that infectious disease control (e.g., HIV/AIDS, malaria, and tuberculosis) has made great strides across low- and middle-income countries (L&MIC). The large majority (85%) of children and adolescents with cancer reside in L&MIC where children represent up to 50% of a country's population, and resources are severely limited for the comprehensive cancer care these patients require. Nursing care of these patients and families must be based on research performed in country to account for challenges in access to care and limited resources and opportunities for nursing specialization. Examples of these challenges include cancer stigma, poverty, traditional medicine practices, cultural norms and decision-making hierarchies, limited education opportunities, lack of universal healthcare, and poor transportation infrastructure to access tertiary care. This chapter summarizes the 137 articles in five languages from 2008 to 2018 that communicate nursing research findings pertaining to pediatric oncology issues from L&MIC across all six World Health Organization (WHO) regions. Despite little or no funding, nurses in academic and clinical settings are actively exploring care priorities in their settings, most often (but not limited to) addressing parent coping, nurse and nursing care issues including symptom management (pain and fatigue, especially), and children's quality of life. The nursing research evidence presented here will begin to inform personalized and precision health in L&MIC to ensure that care is culturally acceptable and considers the environment, nursing practice, nursing science, family, lifestyle behaviors, and response to disease and treatment of this large patient population.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/978-3-030-25804-7_15" target="_blank" rel="noreferrer noopener">10.1007/978-3-030-25804-7_15</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Afungchwi G M
Alqudimat M R
alternative medicine
Burkitt lymphoma
cancer incidence
Cancer Survival
Caregiver
Caregiver Burden
caregiver burnout
Challinor J M
Cytotoxicity
Day S W
Developing World 2020 List
economic status
Fatigue
geographic distribution
gross national income
Health Care Personnel
high income country
Human
immune status
Impact of Events Scale
Infant Mortality
Kaposi sarcoma
lifestyle
low income country
malnutrition
Methodology
middle income country
nurse training
Nursing Care
Nursing Practice
nursing science
Nutrition
Pain
Palliative Therapy
Pediatric Oncology
pediatric oncology nursing
PostTraumatic Stress Disorder
Priority Journal
Quality Of Life
risk factor
Sepsis
Southeast Asian
Southern Europe
Stress
traditional medicine
treatment response
-
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
2019 Oncology 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
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1200/JCO.2018.36.34_suppl.81" target="_blank" rel="noreferrer noopener">http://doi.org/10.1200/JCO.2018.36.34_suppl.81</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A simple system for symptom assessment in pediatric palliative care patients with cancer: A preliminary report
Publisher
An entity responsible for making the resource available
Journal of Clinical Oncology. Conference
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
anorexia; caregiver; child; conference abstract; controlled study; fatigue; female; health care quality; human; insomnia; irritability; loss of appetite; major clinical study; male; malignant neoplasm; nervousness; pain; palliative therapy; symptom assessment
Creator
An entity primarily responsible for making the resource
Madden K; Charone M; Dibaj S; Mills S; Williams J L; Liu D; Bruera E
Description
An account of the resource
Background: Systematic symptom assessment is not a standard of care in children with cancer. Many well-known symptom assessment tools are lengthy or difficult to integrate into a daily pediatric palliative care practice. We created a series of brief and simple questions to be systematically given to children and their caregivers. The primary objective was to determine the percentage of eligible children and caregivers exposed to the questions that were able to complete the assessment. Secondary objectives included documenting the symptom burden at time of consultation, evaluating the level of agreement in symptom reporting between children and caregivers, as well as between children/caregivers and the referring medical team. Method(s): A series of systematic questions were presented to all caregivers (if present) and children who were 7 years of age or older at time of initial consultation with pediatric palliative care. Result(s): 122 consecutive children and caregivers were given the survey. 107/108 (99%) of eligible caregivers and 83/97 (86%) of eligible children successfully completed the survey. Lack of appetite (child - 72/83, 87%; caregiver - 89/107, 83%) and pain (child - 71/83, 86%; caregiver - 86/107, 80%) were the most commonly reported symptoms. Caregivers reported irritability (p = 0.005) and nervousness (p < 0.0001) more frequently than children. Referring medical teams significantly under-diagnosed psychological and other less clinically evident symptoms such as anorexia, fatigue, and insomnia (p < 0.0001). Conclusion(s): Our series of questions is easy to complete by children and caregivers. Systematic symptom assessment of children with cancer needs to become a true standard of care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1200/JCO.2018.36.34_suppl.81" target="_blank" rel="noreferrer noopener">10.1200/JCO.2018.36.34_suppl.81</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).
2018
Anorexia
Bruera E
Caregiver
Charone M
Child
conference abstract
Controlled Study
Dibaj S
Fatigue
Female
Health Care Quality
Human
insomnia
Irritability
Journal of Clinical Oncology. Conference
Liu D
Loss Of Appetite
Madden K
Major Clinical Study
Male
Malignant Neoplasm
Mills S
nervousness
Oncology 2019 List
Pain
Palliative Therapy
Symptom Assessment
Williams J L
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1016/j.pediatrneurol.2010.01.002" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pediatrneurol.2010.01.002</a>
Dublin Core
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Title
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Health-related quality of life in children with Friedreich ataxia
Publisher
An entity responsible for making the resource available
Pediatric Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Adolescent Child Female; Friedreich Ataxia/pp [Physiopathology]; Friedreich Ataxia/px [Psychology]; Friedreich ataxia; Health Status; Humans; Male; Quality of Life/px [Psychology]; tool development; scale development; fatigue; alertness
Creator
An entity primarily responsible for making the resource
Paulsen E K; Friedman L S; Myers L M; Lynch D R
Description
An account of the resource
The use of health-related quality of life scales as outcome measures in clinical trials is increasing. Although such measures have been validated in adults with Friedreich ataxia, they have not been studied in children with this disorder. The health-related quality of life of children with Friedreich ataxia was assessed using the PedsQL 4.0 Generic Core Module and Multidimensional Fatigue Scale. The scores from the Friedreich ataxia cohort were compared to those of control groups (children without a chronic disease). Minimal missing responses support the feasibility of using the PedsQL 4.0 in the Friedreich ataxia population. The scales demonstrated internal consistency, and concordance was observed between child and proxy scores. Children with Friedreich ataxia and their proxies reported lower health-related quality of life than did controls in the Core and Fatigue scales. A modest relationship was seen between markers of disease status and health-related quality of life, providing support for the idea that children with Friedreich ataxia have a lower health-related quality of life than those without a chronic disease. Additional studies are needed to examine the relationship between health-related quality of life and disease markers and to further establish the validity of the PedsQL 4.0 in this population.Copyright 2010 Elsevier Inc. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pediatrneurol.2010.01.002" target="_blank" rel="noreferrer noopener">10.1016/j.pediatrneurol.2010.01.002</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).
2010
Adolescent Child Female
alertness
Fatigue
Friedman L S
Friedreich ataxia
Friedreich Ataxia/pp [Physiopathology]
Friedreich Ataxia/px [Psychology]
Health Status
Humans
Lynch D R
Male
Myers L M
Paulsen E K
Pediatric Neurology
Quality Of Life/px [psychology]
scale development
tool development
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1177/0883073812450750" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073812450750</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Fatigue and depression in children with demyelinating disorders
Publisher
An entity responsible for making the resource available
Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
adolescent; Canada; epidemiology; child behavior; disease duration; priority journal; school child; health survey; self report; cohort analysis; cross-sectional study; psychological aspect; human; article; child; female; male; controlled study; clinical article; comorbidity; childhood disease; mood; sleep; therapy; acute disseminated encephalomyelitis; demyelinating disease; depression; fatigue; multiple sclerosis; acute disseminated encephalomyelitis; demyelinating disorders; multiple sclerosis; acquired demyelinating syndromes; trajectory; characteristics; alertness
Creator
An entity primarily responsible for making the resource
Parrish J B;Weinstock-Guttman B;Smerbeck A;Benedict R H B;Yeh E A
Description
An account of the resource
Fatigue and depression have been shown to be significant problems in children with multiple sclerosis. The rate at which these conditions occur in children with other acquired demyelinating syndromes is unknown. In this cross-sectional study, the authors evaluated 49 children with demyelinating disorders (multiple sclerosis and acute disseminated encephalomyelitis) and 92 healthy controls for depression and/or fatigue using the Behavior Assessment System for Children, Second Edition behavior and mood rating scale and Varni PedsQL Multidimensional Fatigue Scale. The parents of acquired demyelinating syndrome patients were more likely to report elevated depressive symptoms (30.8% vs 10.8%, P =.008). Elevated parent and self-reported total fatigue (25% vs 0%, P <.001, 26.7% vs 8.6%, P =.024) was seen in the patient cohort. The authors conclude that fatigue and depression are far more common in children with acquired demyelinating syndromes than in controls. Clinical attention to and implementation of effective therapies oriented toward these conditions in children with acquired demyelinating syndromes is needed. © The Author(s) 2012.
Identifier
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<a href="http://doi.org/10.1177/0883073812450750" target="_blank" rel="noreferrer noopener">10.1177/0883073812450750</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).
2013
acquired demyelinating syndromes
acute disseminated encephalomyelitis
Adolescent
alertness
Article
Benedict R H B
Canada
characteristics
Child
Child Behavior
Childhood Disease
Clinical Article
Cohort Analysis
Comorbidity
Controlled Study
Cross-sectional Study
demyelinating disease
demyelinating disorders
Depression
disease duration
Epidemiology
Fatigue
Female
Health Survey
Human
Journal of Child Neurology
Male
Mood
Multiple Sclerosis
Parrish J B
Priority Journal
psychological aspect
School Child
Self Report
Sleep
Smerbeck A
Therapy
Trajectory
Weinstock-Guttman B
Yeh E A
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1597/09-009.1" target="_blank" rel="noreferrer noopener">http://doi.org/10.1597/09-009.1</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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Quality of life among children with velocardiofacial syndrome
Publisher
An entity responsible for making the resource available
The Cleft Palate - Craniofacial Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
22q11.2 deletion syndrome; trajectory; characteristics; fatigue; alertness
Creator
An entity primarily responsible for making the resource
Looman W S; O'Conner-Von S K; Thurmes A K
Description
An account of the resource
OBJECTIVE: To explore the health-related quality of life (QoL) among children with velocardiofacial syndrome (VCFS) and to compare QoL by gender and with samples of chronically ill and healthy children. DESIGN AND SETTING: Cross-sectional design, comparing data obtained from a survey of parents of children with VCFS to previously published data from comparison groups of children who are healthy or who have other chronic conditions. PARTICIPANTS: Parents of 45 children aged 2 to 18 years with VCFS participated in this study. Results were compared with published data on the same measures from samples of parents of healthy children (n = 10,343) and children with a variety of chronic conditions (n = 683). MAIN OUTCOME MEASURES: Quality of life, including fatigue, was measured using the PedsQL(TM) Measurement Model. Strengths were assessed by parent report from a list of character traits developed from the Values in Action Classification System. RESULTS: Quality of life was lower across all domains compared with healthy children. Boys with VCFS scored significantly lower than girls on school functioning (p < .05) and cognitive fatigue (p < .01). Compared with children with chronic conditions, children with VCFS scored lower on emotional (p < .01), social (p < .01), and school functioning (p < .001) but not on physical health. Parents described their children's strengths as humor, caring, kindness, persistence, and enthusiasm. CONCLUSIONS: Quality of life among children with VCFS is characterized by significant challenges in the cognitive, social, and emotional domains. These children have strengths that may be useful in coping with the daily challenges of this condition.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1597/09-009.1" target="_blank" rel="noreferrer noopener">10.1597/09-009.1</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2010
22q11.2 Deletion Syndrome
alertness
characteristics
Fatigue
Looman W S
O'Conner-Von S K
The Cleft Palate - Craniofacial Journal
Thurmes A K
Trajectory
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1016/j.ejpn.2017.09.003" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ejpn.2017.09.003</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Intrathecal baclofen treatment an option in X-linked adrenoleukodystrophy
Publisher
An entity responsible for making the resource available
European Journal of Paediatric Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
quality of life; pain; limited mobility; priority journal; school child; spasticity; fatigue; clinical examination; human; article; child; male; clinical article; dystonia; case report; 1309378-01-5 (botulinum toxin A); 1638949-86-6 (botulinum toxin A); 1800016-51-6 (botulinum toxin A); 93384-43-1 (botulinum toxin A); 1134-47-0 (baclofen); adrenoleukodystrophy/dt [Drug Therapy]; adrenoleukodystrophy/su [Surgery]; baclofen/dt [Drug Therapy]; baclofen/po [Oral Drug Administration]; baclofen/tl [Intrathecal Drug Administration]; X chromosome linked disorder/dt [Drug Therapy]; X chromosome linked disorder/su [Surgery]; Addison disease; adrenoleukodystrophy/dt [Drug Therapy]; balance disorder; behavior change; bladder dysfunction; botulinum toxin A; clonus; diplopia; drug dose increase; hearing disorder; hyperpigmentation; intrathecal pump; leukodystrophy; range of motion; strabismus; urinary catheter; visual disorder; X chromosome linked disorder/dt [Drug Therapy]; tone and motor problems; X-linked adrenoleukodystrophy; pharmacologic interventions; intrathecal baclofen; baclofen
Creator
An entity primarily responsible for making the resource
Hjartarson H T; Ehrstedt C; Tedroff K
Description
An account of the resource
Background X-linked adrenoleukodystrophy (X-ALD) is a genetic peroxisomal disorder associated with tissue accumulation of very long chain fatty acids (VLCFAs). In approximately one third of affected males, this causes progressive and irreversible damage to the brain white matter. Progress is often rapid with upper motor neuron damage leading to severe spasticity and dystonia. The increased muscle tone is frequently difficult to alleviate with oral drugs. Here, we describe two patients with X-ALD who have received treatment with intrathecal baclofen pumps (ITB). Case study Both boys had a rapidly progressive cerebral form of the disorder resulting, among other things, in escalating spasticity and dystonia causing severe pain, dramatically reducing their quality of life. Both were treated with a variety of oral medications without adequate relief. Both patients tolerated ITB surgery without complications and the positive clinical effects of treatment with ITB became clear in the following weeks and months, with significantly reduced muscle tone, less pain and better sleep. Moreover, general caretaking became easier. Conclusion The treatment of spasticity and dystonia in these patients is difficult partly due to the relentless nature of this progressive disorder. In our two patients, ITB has been effective from both a symptomatic and palliative perspective. We recommend that such treatment be considered as an early option for increased muscle tone in boys with the cerebral form of X-ALD.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejpn.2017.09.003" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2017.09.003</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).
1134-47-0 (baclofen)
1309378-01-5 (botulinum toxin A)
1638949-86-6 (botulinum toxin A)
1800016-51-6 (botulinum toxin A)
2018
93384-43-1 (botulinum toxin A)
Addison disease
adrenoleukodystrophy/dt [Drug Therapy]
adrenoleukodystrophy/su [Surgery]
Article
baclofen
Baclofen/dt [drug Therapy]
baclofen/po [Oral Drug Administration]
baclofen/tl [Intrathecal Drug Administration]
balance disorder
behavior change
bladder dysfunction
botulinum toxin A
Case Report
Child
Clinical Article
clinical examination
clonus
diplopia
drug dose increase
Dystonia
Ehrstedt C
European Journal of Paediatric Neurology
Fatigue
hearing disorder
Hjartarson H T
Human
hyperpigmentation
intrathecal baclofen
intrathecal pump
Leukodystrophy
limited mobility
Male
Pain
pharmacologic interventions
Priority Journal
Quality Of Life
Range of Motion
School Child
Spasticity
strabismus
Tedroff K
tone and motor problems
urinary catheter
visual disorder
X chromosome linked disorder/dt [Drug Therapy]
X chromosome linked disorder/su [Surgery]
X-linked adrenoleukodystrophy
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1352/1944-7558-116.4.278" target="_blank" rel="noreferrer noopener">http://doi.org/10.1352/1944-7558-116.4.278</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Association Between Fatigue and Autistic Symptoms in Children With Cri du Chat Syndrome
Publisher
An entity responsible for making the resource available
American Journal on Intellectual and Developmental Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
alertness; sleep disturbance; cri-du-chat; trajectory; characteristics; fatigue; autistic symptoms
Creator
An entity primarily responsible for making the resource
Claro A; Cornish K; Gruber R
Description
An account of the resource
In the current study, the authors examined whether the fatigue level of children diagnosed with cri du chat syndrome was associated with the expression of autistic symptoms. Sixty-nine children with cri du chat syndrome were compared with 47 children with moderate to severe intellectual disabilities who did not differ on intellectual severity. Participants were assessed using the Infant Sleep Questionnaire (J. M. B. Morrell, 1999) for fatigue-level rating and the Childhood Autism Rating Scale (E. Schopler, R. J. Reichler, & B. R. Renner, 1988) for autism-level rating. In support of the authors' hypothesis, results indicated that children who exhibited high levels of fatigue were more likely to express high levels of autistic symptoms. Contrary to the authors' hypothesis, children in the comparison group who exhibited high levels of fatigue conferred the greatest vulnerability to the expression of autistic symptoms.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1352/1944-7558-116.4.278" target="_blank" rel="noreferrer noopener">10.1352/1944-7558-116.4.278</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).
2011
alertness
American Journal on Intellectual and Developmental Disabilities
autistic symptoms
characteristics
Claro A
Cornish K
Cri-du-chat
Fatigue
Gruber R
sleep disturbance
Trajectory
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1002/mus.25524" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/mus.25524</a>
Dublin Core
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Title
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Mitochondrial capacity, muscle endurance, and low energy in friedreich ataxia
Publisher
An entity responsible for making the resource available
Muscle and Nerve
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
adolescent; priority journal; scoring system; school child; cross-sectional study; fatigue; human; article; child; female; male; controlled study; adult; clinical article; comparative study; disease severity; Friedreich ataxia; cellular subcellular and molecular biological phenomena and functions; energy; physical energy; mitochondrial capacity; muscle exercise; electrostimulation; Godin Leisure Time Physical Activity Score; mechanomyography; myography; near infrared spectroscopy; oxygen consumption; skeletal muscle; trajectory; characteristics; endurance; muscle endurance; alertness
Creator
An entity primarily responsible for making the resource
Bossie H M; Willingham T B; Schoick R A V; O'Connor P J; McCully K K
Description
An account of the resource
Introduction: In this study we noninvasively evaluated skeletal muscle mitochondrial capacity, muscle-specific endurance, and energy/fatigue feelings in persons with Friedreich ataxia (FRDA) and able-bodied controls (AB). Methods: Forearm mitochondrial capacity was measured in FRDA (n = 16) and AB (n = 10) study participants using the rate of recovery of oxygen consumption after electrical stimulation with near-infrared spectroscopy. Mechanomyography (MMG) assessed muscle endurance after electrical stimulation for 3 minutes at 2 Hz, 4 Hz, and 6 Hz. Validated scales assessed disease severity and energy/fatigue feelings. Results: Groups did not differ in mitochondrial capacity (FRDA and AB: 1.8 +/- 0.3 L/min). The difference in muscle endurance at 6 Hz was lower by 19.2% in the FRDA group (group effect: P < 0.001). Feelings of physical energy were 34% lower in FRDA group. In FDRA muscle, endurance was positively related to mitochondrial capacity (r = 0.59, P = 0.03), and disease severity was negatively related to mitochondrial capacity (r = -0.55, P = 0.04) and muscle endurance (r = -0.60, P = 0.01). Conclusion: Non-invasive measures of skeletal muscle mitochondrial capacity and muscle-specific endurance are useful in monitoring FRDA. Muscle Nerve 56: 773-779, 2017.
Identifier
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<a href="http://doi.org/10.1002/mus.25524" target="_blank" rel="noreferrer noopener">10.1002/mus.25524</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adolescent
Adult
alertness
Article
Bossie H M
cellular subcellular and molecular biological phenomena and functions
characteristics
Child
Clinical Article
Comparative Study
Controlled Study
Cross-sectional Study
Disease Severity
electrostimulation
endurance
energy
Fatigue
Female
Friedreich ataxia
Godin Leisure Time Physical Activity Score
Human
Male
McCully K K
mechanomyography
mitochondrial capacity
Muscle and Nerve
muscle endurance
muscle exercise
myography
near infrared spectroscopy
O'Connor P J
oxygen consumption
physical energy
Priority Journal
Schoick R A V
School Child
scoring system
skeletal muscle
Trajectory
Willingham T B
-
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
October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="https://adc.bmj.com/content/104/Suppl_3/A296.1" target="_blank" rel="noreferrer noopener">https://adc.bmj.com/content/104/Suppl_3/A296.1</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Providing cost-effective and coordinated care for children with medical complexity
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; child; female; home care; human; major clinical study; male; controlled study; nurse; multicenter study; conference abstract; caregiver; gastrostomy; cerebral palsy; pediatrician; outpatient; administrative personnel; artificial ventilation; congenital heart disease; diagnosis; fatigue; limited mobility; machine; medical technology; multidisciplinary team; neuromuscular disease; salary; stress; tracheostomy; ventilator; working time
Creator
An entity primarily responsible for making the resource
Chow C; Shahdadpuri R
Description
An account of the resource
Introduction: Many paediatric hospitals are treating increasing numbers of children with medical complexity (CMC), diagnosed with chronic life-limiting illnesses and requiring life-sustaining home medical technology. These medically fragile children and families are at risk of fragmented care, sub-optimal continuity and high healthcare resource utilization due to their multiple medical issues and care needs. Consequently, the Children's Complex and Home Care Services (CCHS) was established in our institution in April 2016 with the primary aims of providing coordinated, cost-effective and patient- and family-centered care to CMC and their families. This service is run by a multi-disciplinary team of pediatricians, nurses, allied health and administrative staff. CMC in our context have a chronic life-limiting condition that involves at least three body systems and are often technologically dependent with limited mobility. In view of the numerous healthcare professionals involved in their care, multiple medical appointments are often scheduled which result in significant caregiver stress and fatigue. One of the key service implementations was multidisciplinary clinics whereby children are seen over the course of 1-3 hours by multiple clinical, nursing and allied health specialists. The purpose of this study is to describe CCHS service implementations, characterize CCHS patient characteristics and evaluate how multidisciplinary clinics have reduced their healthcare resource utilization. Method(s): 55 patients who were enrolled in the CCHS between April 2016 and October 2018 were studied. Result(s): Patient ages ranged from 2 months to 14.3 years old at time of enrolment. The majority of patients had underlying primary genetic diagnoses (47.2%), and other patients had either the primary diagnosis of cerebral palsy (20%), congenital cardiac disease (5.4%), neuromuscular disease (3.6%) or another or undiagnosed underlying condition (23.6%). Medical technology required at time of enrolment included enteral devices such as nasogastric/nasojejunal tubes or gastrostomies (94.5%), suctioning machines (54.5%), ventilator support (34.5%) and tracheostomies (16.4%). CCHS multidisciplinary clinics managed to reduce the number of outpatient attendances by 6.8 visits per patient-year for CMC enrolled into the service. This saves caregivers from an equivalent number of workdays of lost salary, and translates to C 450 of savings per patient per year on just transportation costs alone. Conclusion(s): CMC are heterogeneous in conditions but similar in care needs, and reducing outpatient attendances and healthcare costs is possible with coordinated multi-disciplinary clinics.
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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).
2019
administrative personnel
Adolescent
Archives of Disease in Childhood
Artificial Ventilation
Caregiver
Cerebral Palsy
Child
Chow C
conference abstract
Congenital Heart Disease
Controlled Study
Diagnosis
Fatigue
Female
Gastrostomy
Home Care
Human
limited mobility
machine
Major Clinical Study
Male
Medical Technology
Multicenter Study
Multidisciplinary team
Neuromuscular Disease
Nurse
October 2019 List
Outpatient
Pediatrician
salary
Shahdadpuri R
Stress
Tracheostomy
ventilator
working time
-
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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2018 Oncology 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
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1002/pbc.27455</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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Care with love: Parents' experiences in caring their child with cancer under palliative care
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
caregiver; palliative therapy; nurse; data analysis; malignant neoplasm; fatigue; sibling; conference abstract; human; child; female; male; interview; clinical article; daily life activity; uncertainty; primary medical care; phenomenology; fear; jealousy
Creator
An entity primarily responsible for making the resource
Nafratilova M; Allenidekania A; Wanda D
Description
An account of the resource
Background/Objectives: Bereaved parents during palliative care affects the quality of life of children and family. This research aims to explore parents' experiences caring children with cancer in palliative condition. Design/Methods: The research applied descriptive qualitative phenomenology design. Data collection was conducted through an in-depth interview involving ten parents as participants, while data analysis used was Colaizzi method Results: The eight themes were identified as caring with love, continuity of fighting, mixed-up feeling, changes of life, being a caregiver for a child, caring children not easy, trying to be normal parents, and seeking help. Parents took care of their children with love by making them comfortable, using love in caring their child, standing by their child, and caring by oriented on their child. The parents shown that they tried to be tough and to keep fighting in caring their child. Mixed-up feelings were worry, uncertainty, sad, fear, fatigue, ignored feeling and isolated feeling, happy, calm, and touched described by the parents. Parents felt negative changes such as to change their daily activities and to limit the other activities. Their found difficulty to care and communicate with their child, financial problem, limitation of time, less support from their family, and jealousy from the sibling. But parents also give the best for their child, and tried to treated their child as normal as the other children. Conclusions: Parents care their child with love even though they feel mixed feelings, difficulty, and changes in their life during palliative care. They need comprehensive support in playing roles as a primary care giver for their child caring with love. Nurses and all health care professionals involved are expected to be able to cooperate in providing palliative care that is comprehensive and continuous to the children and parents.
Identifier
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<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Allenidekania A
Caregiver
Child
Clinical Article
conference abstract
daily life activity
Data Analysis
Fatigue
Fear
Female
Human
Interview
jealousy
Male
Malignant Neoplasm
Nafratilova M
Nurse
Oncology 2018 List
Palliative Therapy
Pediatric Blood and Cancer
Phenomenology
primary medical care
Sibling
Uncertainty
Wanda D
-
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
2018 Oncology 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
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1002/pbc.27455</a>
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Title
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An interdisciplinary care model to establishing palliative care for children and adolescents with cancer
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Taiwan; hospice; adolescent; pain; terminal care; oncology ward; education; palliative therapy; dyspnea; social worker; cancer patient; satisfaction; childhood cancer; case study; constipation; fatigue; health care quality; conference abstract; human; child; cancer model; counseling
Creator
An entity primarily responsible for making the resource
Lin FR; Hsu PY
Description
An account of the resource
Background/Objectives: Palliative care for Pediatric cancer patients and their families includes the relief of symptom and improvement of quality of life at any and all stages of disease. There care are most effectively provided by an interdisciplinary team. The purpose of this study was to develop an interdisciplinary care model to establishing palliative care into end of life care for children and adolescents with cancer. Design/Methods: The setting of this study was about a 24-bed Pediatric Oncology ward in Taiwan from November 2015 to July 2017. We use "satisfaction with care at the end of life" to measure medical members satisfaction and the instruments was based on literature review. We worked out those methods:(1) Symptom management: scheduled education for symptom control and care of the end of life of patient, such as fatigue, pain, constipation, or dyspnea.(2.) To develop an interdisciplinary care model: we implemented case analysis of the end of life of patient and redesigned a new counseling mechanism. (3) To design implement for age-appropriate: child life specialists are required to set and collected age-appropriate toy from social worker. Results: After our study, It have three aspects for satisfaction score: (1)"recognition of the problem by the medical team" were increased from 5.3 points to 8.1 points; (2)" an interdisciplinary care" were increased from 6.3 points to 9.1 points; (3)" age-appropriate implement " were increased from 5.8 points to 9.7 points. Additional benefits for the rate of hospice-palliative coverage, at the end of life in children and adolescents with cancer, were increased from 68% (2013/1/1~2014/12/31) to 100% (2016/1/1~2017/12/31). Conclusions: We found that children and adolescents who died of cancer experienced substantial suffering in the last month of life. Based on our results, we established an interdisciplinary care model that it is most effectively and healthcare quality of palliative care can be improved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Adolescent
cancer model
Cancer Patient
Case Study
Child
Childhood Cancer
conference abstract
Constipation
Counseling
Dyspnea
Education
Fatigue
Health Care Quality
Hospice
Hsu PY
Human
Lin FR
Oncology 2018 List
oncology ward
Pain
Palliative Therapy
Pediatric Blood and Cancer
Satisfaction
Social Worker
Taiwan
Terminal Care
-
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
2018 Oncology 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
Oncology 2018 List
URL Address
<a href="http://doi.org/10.18632/oncotarget.21188" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.18632/oncotarget.21188</a>
Dublin Core
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Title
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End-of-life care in children with hematologic malignancies
Publisher
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Oncotarget
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
home care; adolescent; blood transfusion; retrospective study; 52-26-6 (morphine); 57-27-2 (morphine); prescription; cohort analysis; fatigue; morphine/dt [Drug Therapy]; patient referral; treatment duration; human; article; child; female; male; controlled study; adult; terminal care; clinical article; child care; palliative therapy; intensive care unit; walking difficulty; hematologic malignancy/dt [Drug Therapy]; hematologic malignancy/th [Therapy]; hematologic malignancy/dt [Drug Therapy]; hospital mortality; mucosa inflammation; pallor; petechia; somnolence
Creator
An entity primarily responsible for making the resource
Hoell JI; Warfsmann J; Balzer S; Borkhardt A; Janssen G; Kuhlen M
Description
An account of the resource
Introduction: Hematologic malignancies (HM) represent the most common neoplasms in childhood. Despite improved overall survival rates, they are still a major contributor to cancer death in children. Aims: To determine the proportion of children with HM in pediatric palliative care (PPC) and to identify the clinical characteristics and symptoms in comparison to children with extracranial solid tumors (non HM patients). Patients and Methods: This study was conducted as a single-center retrospective cohort study of patients in the care of a large specialized PPC team. Results: Fifteen HM and 50 non HM patients were included. Symptoms in which HM patients scored significantly higher than non HM patients were mucositis, difficulty moving, somnolence, fatigue, petechiae and paleness. Blood transfusions were more frequently administered to HM patients, but large external hemorrhage was not observed in any child. A large variety of drugs and appliances were needed by the patients, with morphine being the most frequently prescribed drug. During the study period, a much larger and over the years even increasing number of HM patients (not in the care of the PPC team) died in hospital with an (assumed) curative intent, with two thirds dying in the ICU. Conclusions: Children with HM were referred to outpatient PPC with almost the full clinical picture of advanced leukemia. Noteworthy, the number of children with HM dying at home is decreasing in our center, instead a substantial proportion received high-intensity medical hospital care including novel anticancer therapies. These patients thus seem to be at an increased risk of dying in hospital as the right time to transfer them to palliative care is oftentimes missed.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.18632/oncotarget.21188" target="_blank" rel="noreferrer noopener">10.18632/oncotarget.21188</a>
2017
52-26-6 (morphine)
57-27-2 (morphine)
Adolescent
Adult
Article
Balzer S
Blood Transfusion
Borkhardt A
Child
Child Care
Clinical Article
Cohort Analysis
Controlled Study
Fatigue
Female
hematologic malignancy/dt [Drug Therapy]
hematologic malignancy/th [Therapy]
Hoell JI
Home Care
Hospital Mortality
Human
Intensive Care Unit
Janßen G
Kuhlen M
Male
Morphine/dt [drug Therapy]
mucosa inflammation
Oncology 2018 List
Oncotarget
Palliative Therapy
pallor
Patient Referral
petechia
prescription
Retrospective Study
somnolence
Terminal Care
treatment duration
walking difficulty
Warfsmann J
-
Dublin Core
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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/10.1017/s1478951517001237" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/s1478951517001237</a>
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Title
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A cross-sectional pilot study of compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS) in pediatric palliative care (PPC) providers in the United States
Publisher
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Palliative and Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Fatigue; Palliative Care; Pilot Projects; United States; burnout; pediatric palliative care; Cesarean Section; Compassion fatigue; compassion satisfaction
Creator
An entity primarily responsible for making the resource
Kase SM; Waldman ED; Weintraub AS
Description
An account of the resource
OBJECTIVE: Compassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career dissatisfaction. Compassion satisfaction (CS) is emotional fulfillment derived from caring for others. The literature on BO in healthcare providers is extensive, whereas CF and CS have not been comprehensively studied. Because of ongoing exposure to patient and family distress, pediatric palliative care (PPC) providers may be at particular risk for CF. We conducted a cross-sectional pilot study of CF, BO, and CS among PPC providers across the United States. METHOD: The Compassion Fatigue and Satisfaction Self-Test for Helpers and a questionnaire of professional and personal characteristics were distributed electronically and anonymously to PPC physicians and nurses. Logistic and linear regression models for CF, BO, and CS as a function of potential risk factors were constructed. RESULTS: The survey response rate was 39%, primarily consisting of female, Caucasian providers. The prevalence of CF, BO, and CS was 18%, 12%, and 25%, respectively. Distress about a "clinical situation," physical exhaustion, and personal loss were identified as significant determinants of CF. Distress about "coworkers," emotional depletion, social isolation, and "recent involvement in a clinical situation in which life-prolonging activities were not introduced" were significant determinants of BO. Physical exhaustion, personal history of trauma, "recent involvement in a clinical situation in which life-prolonging activities were not introduced," and not discussing distressing issues were significant predictors of lower CS scores. Significance of results CF and BO directly influence the well-being and professional performance of PPC providers. To provide effective compassionate care to patients, PPC providers must be attentive to predictors of these phenomena. Further work is needed to explore additional causes of CF, BO, and CS in PPC providers as well as potential interventions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/s1478951517001237" target="_blank" rel="noreferrer noopener">10.1017/s1478951517001237</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
Burnout
Cesarean Section
Compassion Fatigue
compassion satisfaction
Fatigue
Kase SM
Palliative And Supportive Care
Palliative Care
Pediatric Palliative Care
Pilot Projects
United States
Waldman ED
Weintraub AS
-
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/pbc.24641" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.24641</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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Physical activity (PA) and sleep among children and adolescents with cancer
Publisher
An entity responsible for making the resource available
Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
adolescent; Child; Female; Humans; Male; Neoplasms; Fatigue; Motor Activity; Sleep; Actigraphy
Creator
An entity primarily responsible for making the resource
Orsey AD; Wakefield DB; Cloutier MM
Description
An account of the resource
BACKGROUND: Although sleep and physical activity often are impaired among adult cancer patients, there is limited data among pediatric oncology populations. We conducted a prospective study to investigate the relationship between physical activity (PA) and sleep among children with cancer. PROCEDURE: Between 11/12/09 and 02/06/12, PA while awake and sleep variables were assessed by actigraphy collected over 7 days in 36 children (age range 8-18 years) with cancer (23 leukemia/lymphoma, 5 brain tumor, 8 solid tumor). Sleep diaries were used to determine sleep time, sleep quality, and morning mood. Fatigue was assessed at study initiation using fatigue instruments. RESULTS: Participants had impaired sleep based upon normative data compiled from multiple studies of more than 1,700 healthy children from 1 to 18 years of age [1], including decreased total sleep time (mean 6.6 hours, standard deviation (SD) 1.3 hours), increased wake after sleep onset (WASO; mean 2 hours, SD 1.4 hours), increased awakenings during sleep (mean 28.3 wake bouts, SD 7.8 bouts), and decreased sleep efficiency (mean 74.2%, SD 13.3%). Fatigue correlated with self-reported sleep quality but not with disturbances in sleep as measured by actigraphy. In longitudinal models that controlled for age, diagnosis group, gender, race, and steroid use, higher average activity, as measured by actigraphy, was associated with improved sleep quantity (P = 0.005) and efficiency (P = 0.001). CONCLUSION: Pediatric oncology patients demonstrate impaired sleep. Greater PA was significantly associated with improved sleep quantity and efficiency in pediatric oncology participants. As a potentially modifiable factor, PA may offer a mechanism to improve sleep in pediatric oncology patients.
2013-11
Identifier
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<a href="http://doi.org/10.1002/pbc.24641" target="_blank" rel="noreferrer">10.1002/pbc.24641</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
2013
Actigraphy
Adolescent
Backlog
Child
Cloutier MM
Fatigue
Female
Humans
Journal Article
Male
Motor Activity
Neoplasms
Orsey AD
Pediatric Blood & Cancer
Sleep
Wakefield DB
-
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/pbc.24706" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.24706</a>
Dublin Core
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Title
A name given to the resource
Fatigue in adolescents with cancer compared to healthy adolescents
Publisher
An entity responsible for making the resource available
Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
adolescent; Female; Humans; Male; Neoplasms; Fatigue; Affect; Depression
Creator
An entity primarily responsible for making the resource
Daniel LC; Brumley LD; Schwartz LA
Description
An account of the resource
BACKGROUND: Cancer-related fatigue is one of the most pervasive and debilitating side-effects of cancer treatment and adolescents consistently rate cancer-related fatigue as one of the most distressing aspects of treatment. Because fatigue is also high in adolescents without cancer, the current study aims to describe fatigue in adolescents with cancer relative to a control group and to identify associates of such fatigue. Knowing this is important for understanding the extent of the problem in adolescents with cancer relative to healthy adolescents and for understanding who is most at risk for fatigue and related distress. PROCEDURE: Adolescents with cancer and their caregivers (n = 102) and adolescents without a history of chronic health conditions and their caregivers (n = 97) completed the Multidimensional Fatigue Scale and measures of depression, quality of life (QoL), affect, coping, and family functioning. RESULTS: Adolescents with cancer and their caregivers reported significantly more adolescent fatigue across all domains (with the exception of adolescent reports of cognitive fatigue) relative to adolescents without chronic health conditions. Higher fatigue was significantly related to adolescent report of more symptoms of depression, poorer QoL, higher negative affect, less positive affect, and behavioral disengagement coping style. Fatigue was not related to active coping or family functioning. CONCLUSIONS: Adolescents with cancer experience significantly more fatigue than peers without chronic health conditions. Reports of fatigue are closely related to multiple indicators of psychosocial well-being, suggesting that fatigue may be an important cancer-related symptom to assess and manage to improve adolescent QoL.
2013-11
Identifier
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<a href="http://doi.org/10.1002/pbc.24706" target="_blank" rel="noreferrer">10.1002/pbc.24706</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2013
Adolescent
Affect
Backlog
Brumley LD
Daniel LC
Depression
Fatigue
Female
Humans
Journal Article
Male
Neoplasms
Pediatric Blood & Cancer
Schwartz LA
-
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/pbc.21042" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.21042</a>
Dublin Core
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Title
A name given to the resource
Symptoms in the palliative phase of children with cancer
Publisher
An entity responsible for making the resource available
Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Palliative Care; Neoplasms; Pain; Pain Management; Terminal Care; Physician-Patient Relations; Parent-Child Relations; Parents; Emotions; Questionnaires; Attitude to Death; Professional-Family Relations; social support; Age Factors; caregivers; Fatigue; Fear; Anorexia; Leukemia; Treatment Failure; Gastrointestinal Diseases; Stress; Preschool; Psychological; Brain neoplasms; Mobility Limitation
Creator
An entity primarily responsible for making the resource
Theunissen JMJ; Hoogerbrugge PM; van Achterberg T; Prins JB; Vernooij-Dassen M; van den Ende CHM
Description
An account of the resource
BACKGROUND: The aim of the study was to make a comprehensive inventory of the physical, psychological, and social symptoms of children with cancer and their parents during the palliative phase and the extent to which health professionals address those symptoms. PROCEDURE: Forty parents of children who died 1-3 years prior to data collection (structured questionnaire) were invited to participate in the study. RESULTS: The response rate was 32 out of 40 parents (80%). Most frequently mentioned physical symptoms were pain, poor appetite, and fatigue. The children's most mentioned psychological symptoms were sadness, difficulty in talking to their parents about their feelings regarding illness and death and fear of being alone. The symptoms of fear of death of the child and fear of physical symptoms were most frequently mentioned parents' psychological symptoms. Health professionals addressed 82% of the children's physical symptoms, 43% of the children's psychological symptoms, and 56% of the parents' psychological symptoms. Parents indicated that after professional attention the proportion of children's physical symptoms that were completely or partially resolved was 18 and 26%, respectively. For children's psychological symptoms the figures were 9 and 25%, respectively, and for parents' psychological symptoms 2 and 23%, respectively. CONCLUSIONS: The burden of symptoms of the child with cancer during the palliative phase and their parents is high. Health professionals focus mainly on the physical symptoms of the child. Relief of symptoms could not be achieved for a large proportion of symptoms. Further prospective research is necessary to investigate the kind, frequency and intensity of symptoms in order to tailor optimal palliative care to the needs of both child and parent.
2007-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.21042" target="_blank" rel="noreferrer">10.1002/pbc.21042</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
2007
Adolescent
Age Factors
Anorexia
Attitude To Death
Backlog
Brain Neoplasms
Caregivers
Child
Emotions
Fatigue
Fear
Female
Gastrointestinal Diseases
Hoogerbrugge PM
Humans
Infant
Journal Article
Leukemia
Male
Mobility Limitation
Neoplasms
Pain
Pain Management
Palliative Care
Parent-child Relations
Parents
Pediatric Blood & Cancer
Physician-patient Relations
Preschool
Prins JB
Professional-family Relations
Psychological
Questionnaires
Retrospective Studies
Social Support
Stress
Terminal Care
Theunissen JMJ
Treatment Failure
van Achterberg T
van den Ende CHM
Vernooij-Dassen M
-
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.genhosppsych.2009.03.012" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.genhosppsych.2009.03.012</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Coping, self-efficacy and psychiatric history in patients with both chronic widespread pain and chronic fatigue
Publisher
An entity responsible for making the resource available
General Hospital Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
adolescent; Female; Humans; Male; Young Adult; Pain; Adult; Attitude to Health; Emotions; Questionnaires; Chronic disease; Aged; Middle Aged; Comorbidity; Self Efficacy; Fatigue; Problem Solving; Severity of Illness Index; Activities of Daily Living; Regression Analysis; Depressive Disorder; Adaptation; Psychological; Stress Disorders; Chronic; Fatigue Syndrome; Fibromyalgia; Major; Post-Traumatic
Creator
An entity primarily responsible for making the resource
Smith WR; Strachan ED; Buchwald D
Description
An account of the resource
OBJECTIVE: To investigate the relationship of coping style and self-efficacy to functional impairment in a group of patients with both chronic widespread pain (CWP) and chronic fatigue, as well as the possible mediating role of psychiatric diagnosis. METHODS: We identified 138 consecutive clinic patients who met criteria for CWP and chronic fatigue. We collected demographic and clinical characteristics, as well as measures of emotion-focused and problem-focused coping styles, fatigue-related self-efficacy and self-reported general health. Psychiatric diagnoses were determined with a structured interview. Short Form-36 subscales of pain-related and fatigue-related functioning were the dependent variables in ordinal multiple regression analyses to identify the best-fit model for each. RESULTS: In the final model for pain, increased functional impairment was associated with increased emotion-focused coping as well as less education, lower general health scores and higher body mass index. Conversely, in the final model for fatigue, increased functional impairment was significantly associated with less emotion-focused coping, lower general health scores and lower self-efficacy. CONCLUSIONS: The unexpected finding that emotion-focused coping was associated differently with chronic pain and fatigue among patients who experience both symptoms is discussed in the context of the research on the effects of self-efficacy and possible treatment approaches.
2009-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.genhosppsych.2009.03.012" target="_blank" rel="noreferrer">10.1016/j.genhosppsych.2009.03.012</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
2009
Activities of Daily Living
Adaptation
Adolescent
Adult
Aged
Attitude To Health
Backlog
Buchwald D
Chronic
Chronic Disease
Comorbidity
Depressive Disorder
Emotions
Fatigue
Fatigue Syndrome
Female
Fibromyalgia
General Hospital Psychiatry
Humans
Journal Article
Major
Male
Middle Aged
Pain
Post-traumatic
Problem Solving
Psychological
Questionnaires
Regression Analysis
Self Efficacy
Severity Of Illness Index
Smith WR
Strachan ED
Stress Disorders
Young Adult
-
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
Oncology
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
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2016-001132" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmjspcare-2016-001132</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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Non-pharmacological interventions for management of fatigue among children with cancer: systematic review of existing practices and their effectiveness
Publisher
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Bmj Supportive Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Cancer; Children; Complementary Therapy; Fatigue; Non-pharmacological
Creator
An entity primarily responsible for making the resource
Bhardwaj T; Koffman J
Description
An account of the resource
OBJECTIVES: Fatigue is common among children living with cancer, particularly in advance stages. Little is known about the effectiveness of non-pharmacological approaches to manage this complex and distressing symptom among children. Thus, the present paper aim to critically examine the effectiveness and setting for non-pharmacological interventions to manage fatigue among children with cancer. METHODS: Six electronic databases were screened first in February 2013 and at second instance in March 2015. They include PsycINFO, Medline, EMBASE, CINAHL, Scopus and Cochrane library. All databases were systematically searched for literature on fatigue and cancer, limited to children (as age group) and English language. RESULTS: 1498 articles were identified, of which six were reviewed. Three types of interventions for managing fatigue were identified including (1) complementary and alternative medicine (healing touch/massage therapy), (2) exercise-based interventions and (3) nursing-based interventions. Most interventions were delivered during active treatment and in hospital settings where parents were involved to optimise participation. Despite fatigue scores being lower among intervention groups, no study findings were observed as being statistically significant. CONCLUSION: Fatigue is common among children treated for and living with cancer. The most appropriate setting to deliver non-pharmacological interventions to manage fatigue appears to be in hospital. However, in absence of any strong evidence, professionals need to be cautious about existing non-pharmacological interventions. Future research must adopt more rigorous research designs that are adequately powered using validated measures to identify potential benefits. In addition, researchers may wish to test psychosocial interventions shown to be of benefit in adults.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2016-001132" target="_blank" rel="noreferrer">10.1136/bmjspcare-2016-001132</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Bhardwaj T
Bmj Supportive Palliative Care
Cancer
Children
Complementary Therapy
Fatigue
Koffman J
Non-pharmacological
Oncology 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
A name given to the resource
Oncology
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
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2016.09.012" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2016.09.012</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners
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
Cancer Epidemiology; General Practitioner; Palliative Therapy; Child; Controlled Study; Cross-sectional Study; Death; Distress Syndrome; Doctor Patient Relation; Fatigue; Human; Human Versus Animal Comparison; Major Clinical Study; Nonhuman; Pain; Panic; Powerlessness; Questionnaire; Sadness; Symptom; Thermometer
Creator
An entity primarily responsible for making the resource
van der Geest IMM; Bindels PJE; Pluijm SMF; Michiels EMC; van der Heide A; Pieters R; Darlington ASE; van den Heuvel-Eibrink MM
Description
An account of the resource
Context: Although a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with incurable cancer. Objectives: The objective of this study was to explore the perspectives of GPs who care for children with advanced-stage cancer in a home-based setting. Methods: In this cross-sectional study, 144 GPs who provided home-based palliative care to 150 children with incurable cancer from 2001 through 2010 were invited to complete a questionnaire addressing their perspectives regarding: 1) symptom management, 2) collaboration with other health care professionals, 3) the child's death and care after death, and 4) impact of having provided palliative care, scored on distress thermometer (range 0-10). Results: A total of 112 GPs (78%) responded, and 91 GPs completed the questionnaire for 93 patients. The median interval between the child's death and completing the questionnaire was seven years. The most prevalent symptoms reported in the patients were fatigue (67%) and pain (61%). Difficulties with communicating with (14%), coordinating with (11%), collaborating with (11%), and contacting (2%) fellow members of the multidisciplinary treatment team were rare. Hectic (7%) and shocking (5%) situations and panic (2%) around the child's death were rare. GPs reported feelings of sadness (61%) and/or powerlessness (43%) around the time of the patient's death, and they rated their own distress level as relatively high during the terminal phase (median score 6, range 0-9.5). The majority of GPs (94%) reported that they ultimately came to terms with the child's death. Conclusion: In general, GPs appear to be satisfied with the quality of home-based palliative care that they provide pediatric patients with incurable cancer. Communication among health care professionals is generally positive and is considered important. Finally, although the death of a pediatric patient has a profound impact on the GP, the majority of GPs eventually come to terms with the child's death. Copyright _ 2017 American Academy of Hospice and Palliative Medicine.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2016.09.012" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.09.012</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Bindels PJE
Cancer Epidemiology
Child
Controlled Study
Cross-sectional Study
Darlington ASE
Death
Distress Syndrome
Doctor Patient Relation
Fatigue
General Practitioner
Human
Human Versus Animal Comparison
Journal of Pain and Symptom Management
Major Clinical Study
Michiels EMC
Nonhuman
Oncology 2017 List
Pain
Palliative Therapy
Panic
Pieters R
Pluijm SMF
Powerlessness
Questionnaire
Sadness
Symptom
Thermometer
van den Heuvel-Eibrink MM
van der Geest IMM
van der Heide 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
November 2017 List
URL Address
http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=emex&AN=618183528
Notes
<p>Using Smart Source Parsing<br />(pp Date of Publication: 2017</p>
Dublin Core
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Title
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Late Effects of Treatment and Palliative Care
Publisher
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Pediatric Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Central Nervous System Tumor; Palliative Therapy; 59-05-2 (methotrexate); 69-74-9 (cytarabine); 147-94-4 (cytarabine); 154-93-8 (carmustine); 7413-34-5 (methotrexate); 15475-56-6 (methotrexate); 15663-27-1 (cisplatin); 26035-31-4 (cisplatin); 96081-74-2 (cisplatin); Advance Care Planning; Appetite Disorder; Bone Density; Brain Tumor; Carmustine; Childhood Cancer Survivor; Cisplatin; Constipation; Corticosteroid; Cytarabine; Diarrhea; Dyspnea; Endocrine Disease; Fatigue; Genetic Polymorphism; Health Care Quality; Human; Incidence; Medical Decision Making; Medulloblastoma; Methotrexate; Morbidity; Mortality Rate; Nausea And Vomiting; Neuroectoderm Tumor; Neuropathic Pain; Neuropsychological Test; Pain Assessment; Patient Care; Phase 1 Clinical Trial (topic); Priority Journal; Psychosocial Disorder; Quality Of Life; Questionnaire; Radiation Injury; Respiration Depression; Seizure; Signal Transduction; Spasticity
Creator
An entity primarily responsible for making the resource
Chang E; Goldsby R; Mueller S; Banerjee A
Description
An account of the resource
Identifying late effects of treatment and integrating palliative care when appropriate are increasingly recognized as important elements of childhood tumor management. Patients with CNS tumors are at a high risk for mortality, and survivors have high morbidity rates related to the late effects of treatment. While intensified therapy has improved average 5-year survival in patients with pediatric brain tumors to 73 % (Ostrom et al. 2014) from less than 60 % in 1975-1979 (Linabery and Ross 2008), it has also increased the long-term consequences. Survivors may develop a spectrum of late effects ranging from subtle memory loss and cosmetic anomalies to severe neurological disabilities and recurrent neoplasms. While seemingly quite different, both palliative and late-effects care focus on improving quality of life for patients and need to be integrated into the overall care plan.
Identifier
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10.1007/978-3-319-30789-3_17
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).
147-94-4 (cytarabine)
154-93-8 (carmustine)
15475-56-6 (methotrexate)
15663-27-1 (cisplatin)
2017
26035-31-4 (cisplatin)
59-05-2 (methotrexate)
69-74-9 (cytarabine)
7413-34-5 (methotrexate)
96081-74-2 (cisplatin)
Advance Care Planning
Appetite Disorder
Banerjee A
Bone Density
Brain Tumor
Carmustine
Central Nervous System Tumor
Chang E
Childhood Cancer Survivor
Cisplatin
Constipation
Corticosteroid
Cytarabine
Diarrhea
Dyspnea
Endocrine Disease
Fatigue
Genetic Polymorphism
Goldsby R
Health Care Quality
Human
Incidence
Medical Decision Making
Medulloblastoma
Methotrexate
Morbidity
Mortality Rate
Mueller S
Nausea And Vomiting
Neuroectoderm Tumor
Neuropathic Pain
Neuropsychological Test
November 2017 List
Pain Assessment
Palliative Therapy
Patient Care
Pediatric Oncology
Phase 1 Clinical Trial (topic)
Priority Journal
Psychosocial Disorder
Quality Of Life
Questionnaire
Radiation Injury
Respiration Depression
Seizure
Signal Transduction
Spasticity