1
40
179
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Title
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August 2022 List
Text
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August 2022 List
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<a href="http://doi.org/10.1097/NJH.0000000000000884" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/NJH.0000000000000884</a>
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"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit
Publisher
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Journal of hospice and palliative nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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child; terminal care; nursing; chronic disease; male; pain; human; intensive care; pediatric intensive care unit; perception; narrative; article; controlled study; interview; major clinical study; distress syndrome; comfort; cancer patient; quantitative analysis; malignant neoplasm; infant; sedation; memory
Creator
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Broden EG; Hinds PS; Werner-Lin AV; Curley MAQ
Description
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Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years. Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.
Identifier
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<a href="http://doi.org/10.1097/NJH.0000000000000884" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000884</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).
2022
Article
August 2022 List
Broden EG
Cancer Patient
Child
Chronic Disease
Comfort
Controlled Study
Curley MAQ
Distress Syndrome
Hinds PS
Human
Infant
Intensive Care
Interview
Journal of Hospice and Palliative Nursing
Major Clinical Study
Male
Malignant Neoplasm
Memory
Narrative
Nursing
Pain
Pediatric Intensive Care Unit
Perception
quantitative analysis
Sedation
Terminal Care
Werner-Lin AV
-
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
March 2017 List
Dublin Core
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Title
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A Prospective Study On The Characteristics And Subjects Of Pediatric Palliative Care Case Management Provided By A Hospital Based Palliative Care Team
Publisher
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Bmc 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
Case Management; Hospital; Palliative Therapy; Prospective Study; Child; Clergy; Controlled Study; Human; Major Clinical Study; Nurse; Psychologist; Questionnaire; Social Worker
Creator
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Jagt Van Kampen CT; Kars MC; Colenbrander DA; Bosman DK; Grootenhuis MA; Caron HN; Schouten-Van Meeteren AYN
Description
An account of the resource
Background: Case management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different disciplines, and times of usage of a pediatric palliative care case management program compared for patients with malignant disease (MD) and non-malignant disease (NMD). Methods: A three-month prospective study, with questionnaires filled in by members of a pediatric palliative care team (PPCT) for each contact with parents. Results: Four hundred fifty-five contacts took place with parents of 70 patients (27MD, 43NMD). Sixty-two percent of all contacts were with the specialized nurse. The child life specialists, psychologist and social worker were also regularly consulted, the chaplain was not consulted. Ninety-five percent of all contacts took place between 8 am and 6 pm during weekdays, a limited number between 6 pm and 9 pm. Twenty-five percent of all contacts were proactively initiated by the PPCT, 25 % were initiated by parents. In these care characteristics, no differences were seen for MD and NMD patients. Psychosocial topics were addressed most frequently. MD patients consulted the PPCT more often about school and NMD patients about socio-economic issues. Conclusions: All different disciplines of the PPCT were regularly consulted, except for the chaplain. With an easy accessible team with a highly pro-active approach, availability from 8 am to 9 pm seems sufficient to accommodate patient's and parent's needs. More anticipation seems required for socio-economic topics. This insight in pediatric palliative case management can provide guidance in the development of a new PPCT. Copyright © 2016 The Author(s).
Identifier
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10.1186/s12904-016-0166-8
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
BMC Palliative Care
Bosman DK
Caron HN
Case Management
Child
Clergy
Colenbrander DA
Controlled Study
Grootenhuis MA
Hospital
Human
Jagt Van Kampen CT
Kars MC
Major Clinical Study
March 2017 List
Nurse
Palliative Therapy
Prospective Study
Psychologist
Questionnaire
Schouten-Van Meeteren AYN
Social Worker
-
Dublin Core
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Title
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2019 Oncology List
Text
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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>
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Title
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A simple system for symptom assessment in pediatric palliative care patients with cancer: A preliminary report
Publisher
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Journal of Clinical Oncology. Conference
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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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
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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
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<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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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
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Title
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December 2019 List
Text
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December 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjpo-2019-000547" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjpo-2019-000547</a>
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Title
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Access to paediatric palliative care in children and adolescents with complex chronic conditions: A retrospective hospital-based study in Brussels, Belgium
Publisher
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BMJ Paediatrics Open
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; article; Belgium; cardiovascular disease; child; chronic disease; complex chronic condition; congenital disorder; data base; female; gastrointestinal disease; genetic disorder; groups by age; health care access; hematologic disease; hospital; hospital admission; hospitalized adolescent; hospitalized child; human; Icd-9; immune deficiency; infant; length of stay; major clinical study; male; malignant neoplasm; metabolic disorder; morbidity; neurologic disease; newborn; palliative therapy; patient care; patient referral; pediatric patient; pediatric ward; priority journal; respiratory tract disease; retrospective study; urinary tract disease
Creator
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Friedel M; Gilson A; Bouckenaere D; Brichard B; Fonteyne C; Wojcik T; De Clercq E; Guillet A; Mahboub A; Lahaye M; Aujoulat I
Description
An account of the resource
BACKGROUND: Paediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these conditions in Belgium, their referral to PLTs is unknown. OBJECTIVES: The aim of the study was to identify, over a 5-year period (2010-2014), the number of children and adolescents (0-19 years) living with a CCC, and also their referral to PLTs. METHODS: International Classification of Disease codes (ICD-9) corresponding to a CCC, as described by Feudtner et al, and national registration numbers were extracted from the databases of all hospitals (n=8) and PLTs (n=2) based in the Brussels region. Aggregated data and pseudonymised national registration number were transmitted to the research team by a Trusted Third Party (eHealth). Ages and diagnostic categories were calculated using descriptive statistics. RESULTS: Over 5 years (2010-2014) in the Brussels region, a total of 22 721 children/adolescents aged 0-19 years were diagnosed with a CCC. Of this number, 22 533 were identified through hospital registries and 572 through PLT registries. By comparing the registries, we found that of the 22 533 children/adolescents admitted to hospital, only 384 (1.7%) were also referred to a PLT. CONCLUSION: In Belgium, there may be too few referrals of children and adolescents with CCC to PLTs that ensure continuity of care.
Identifier
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<a href="http://doi.org/10.1136/bmjpo-2019-000547" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2019-000547</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).
2019
Adolescent
Article
Aujoulat I
Belgium
BMJ Paediatrics Open
Bouckenaere D
Brichard B
Cardiovascular Disease
Child
Chronic Disease
complex chronic condition
congenital disorder
Data Base
De Clercq E
December 2019 List
Female
Fonteyne C
Friedel M
gastrointestinal disease
Genetic Disorder
Gilson A
groups by age
Guillet A
Health Care Access
hematologic disease
Hospital
Hospital Admission
hospitalized adolescent
Hospitalized Child
Human
Icd-9
immune deficiency
Infant
Lahaye M
Length Of Stay
Mahboub A
Major Clinical Study
Male
Malignant Neoplasm
Metabolic Disorder
Morbidity
Neurologic Disease
Newborn
Palliative Therapy
Patient Care
Patient Referral
pediatric patient
pediatric ward
Priority Journal
Respiratory Tract Disease
Retrospective Study
urinary tract disease
Wojcik T
-
Dublin Core
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Title
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March 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
March 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.269" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1016/j.jpainsymman.2018.12.269</a>
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Title
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Access to Pediatric Palliative Care in the Neonatal Intensive Care Unit by Minorities and Rural-Dwellers in the Deep South: Patterns of Care from 2009-2017 (S816)
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
2019
Subject
The topic of the resource
infant; hospice; mortality; Mississippi; Alabama; palliative therapy; major clinical study; retrospective study; Caucasian; neonatal intensive care unit; prematurity; time of death; conference abstract; medical record review; human; child; female; male; controlled study; hospitalization; resuscitation; statistics; medicaid; data analysis software; Louisiana; African American; hospitalized infant; travel
Creator
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Currie E; Wolfe J; Boss R; Ejem D; Perna S; Dionne-Odom J; Buckingham S; McKillip K; Bakitas M
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.269" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.269</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).
Description
An account of the resource
Objectives: 1. Describe patterns of pediatric palliative care and care disparities in neonatal intensive care unit (NICU) patients and families hospitalized in the Deep South (Alabama, Louisiana, and Mississippi). 2. Describe implications for practice related to current trends of pediatric palliative care use in the NICU and implications for future research. Original Research Background: Pediatric mortality is the highest in the first year of life. In 2013, 23,446 infants died in the U.S. Access to timely pediatric palliative care (PPC) services are limited for seriously ill infants and their families in the U. S. Deep South. Patterns of PPC in the neonatal intensive care unit (NICU) and the extent of PPC disparities in the Deep South are unknown. Research Objectives: Examine racial and geographical differences in pediatric palliative care (PPC) consultation for seriously ill infants in the neonatal intensive care unit.
2019
African American
Alabama
Bakitas M
Boss R
Buckingham S
Caucasian
Child
conference abstract
Controlled Study
Currie E
Data Analysis Software
Dionne-Odom J
Ejem D
Female
Hospice
Hospitalization
hospitalized infant
Human
Infant
Journal of Pain and Symptom Management
Louisiana
Major Clinical Study
Male
March 2019 List
McKillip K
Medicaid
Medical Record Review
Mississippi
Mortality
Neonatal Intensive Care Unit
Palliative Therapy
Perna S
Prematurity
Resuscitation
Retrospective Study
Statistics
time of death
travel
Wolfe J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
June 2018 List
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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).
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 2018 List
URL Address
<a href="http://doi.org/10.18632/oncotarget.24929" target="_blank" rel="noreferrer noopener">http://doi.org/10.18632/oncotarget.24929</a>
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Title
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Advance care planning and outcome in pediatric palliative home care
Publisher
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Oncotarget
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
advance care planning; home care; life sustaining treatment; medical order; palliative therapy; article; child; controlled study; death; female; hospice; human; major clinical study; male; resuscitation; retrospective study
Creator
An entity primarily responsible for making the resource
Hoell JI; Weber HL; Balzer S; Danneberg M; Gagnon G; Trocan L; Borkhardt A; Janssen G; Kuhlen M
Description
An account of the resource
Pediatric advance care planning seeks to ensure end-of-life care conforming to the patients/their families' preferences. To expand our knowledge of advance care planning and "medical orders for life-sustaining treatment" (MOLST) in pediatric palliative home care, we determined the number of patients with MOLST, compared MOLST between the four "Together for Short Lives" (TfSL) groups and analyzed, whether there was a relationship between the content of the MOLST and the patients' places of death. The study was conducted as a single-center retrospective analysis of all patients of a large specialized pediatric palliative home care team (01/2013-09/2016). MOLST were available in 179/198 children (90.4%). Most parents decided fast on MOLST, 99 (55.3%) at initiation of pediatric palliative home care, 150 (83.4%) within the first 100 days. MOLST were only changed in 7.8%. Eighty/179 (44.7%) patients decided on a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) order, 58 (32.4%) on treatment limitations of some kind and 41 (22.9%) wished for the entire spectrum of life-sustaining measures (Full Code). Most TfSL group 1 families wanted DNACPR and most TfSL group 3/4 parents Full Code. The majority (84.9%) of all DNACPR patients died at home/hospice. Conversely, all Full Code patients died in hospital (80% in an intensive care setting). The circumstances of the childrens' deaths can therefore be predicted considering the content of the MOLST. Regular advance care planning discussions are thus a very important aspect of pediatric palliative home care.
Identifier
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<a href="http://doi.org/10.18632/oncotarget.24929" target="_blank" rel="noreferrer noopener">10.18632/oncotarget.24929</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
Advance Care Planning
Article
Balzer S
Borkhardt A
Child
Controlled Study
Danneberg M
Death
Female
Gagnon G
Hoell JI
Home Care
Hospice
Human
Janßen G
June 2018 List
Kuhlen M
Life Sustaining Treatment
Major Clinical Study
Male
medical order
Oncotarget
Palliative Therapy
Resuscitation
Retrospective Study
Trocan L
Weber HL
-
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/" target="_blank" rel="noreferrer noopener">http://doi.o
rg/</a>
Dublin Core
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Title
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Aggressiveness of care at the end of life in children with cancer: A nationwide cohort study
Publisher
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Annals of 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
quality of life; Cause of Death; Child; Prevalence; Cohort Studies; Palliative Care; Aggression; cancer staging; major clinical study; cohort analysis; Quality of Life; Only Child; school child; developmental stage; Portugal; Icd-9; multicenter study; human; child; female; male; hospitalization; palliative therapy; resuscitation; morbidity; prevalence; intensive care unit; total parenteral nutrition; aggressiveness; immunotherapy; vascular access
Creator
An entity primarily responsible for making the resource
Cardoso A; Martins BD; Lacerda A; Gomes B; Lopes S
Description
An account of the resource
Background: Cancer remains the leading medical cause of death in children. Ensuring quality of life should be a priority, but it may be difficult to stop treatments, particularly in settings where palliative care is scarce. Little is known about how many children dying from cancer experience aggressive care near the end of life (ACCEoL) in such settings (the most common worldwide). Our study aims to determine time trends in the prevalence of ACCEoL in this population. Methods: Cohort study of children (0-17yo)who died with ICD-9-CMdiagnosis of cancer in public hospitals in mainland Portugal (Jan'10 toDec'15), identified fromthe Hospital Morbidity database. Based on previous studies and clinical experience, measures of ACCEoL comprised: in last 14 days of life: a) intravenous chemo/immunotherapy; in last 30 days of life: b)>14 days spent in hospital, c)>1 hospitalization, d) intensive care unit (ICU) admission, e) advanced life support (e.g. cardiopulmonary resuscitation), f) insertion of devices (e.g. central vascular access, CVA), g) total parenteral nutrition (TPN).We calculated prevalences and tested for time trends using chi2 for trend. Results: The study included 300 patients (median age 9 yo, IQR 4-14, 58.7%male). The prevalence of ACCEoL was stable over time, with 87.8%of the children experiencing at least one ACCEoLmeasure (85.2%in 2010, 88.4%in 2015; p=0.816)). Themost prevalent individual ACCEoL measures were>14 days spent in hospital (51.0%) and>1 hospitalization (43.3%). Most measures showed no statistically significant time trend. Conclusions: In a setting in early stages of pediatric palliative care development, we found that eight in ten children dying from cancer experience ACcEoL in their last month of life. This estimate is higher than those found in countries in more advanced developmental stages and may indicate a need to increase paediatric palliative care availability. The findings also prompt healthcare professionals to reflect on their current practice, balancing treatments and hospitalisations with patients' quality of life in the days they have to live.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
2017
Aggression
aggressiveness
Annals of Oncology
Cancer Staging
Cardoso A
Cause Of Death
Child
Cohort Analysis
Cohort Studies
developmental stage
Female
Gomes B
Hospitalization
Human
Icd-9
immunotherapy
Intensive Care Unit
Lacerda A
Lopes S
Major Clinical Study
Male
Martins BD
Morbidity
Multicenter Study
Oncology 2018 List
Only Child
Palliative Care
Palliative Therapy
Portugal
Prevalence
Quality Of Life
Resuscitation
School Child
total parenteral nutrition
vascular access
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.53" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.53</a>
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Title
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An innovative hybrid palliative care fellowship program: empowering pediatricians and enhancing care for children in resource-limited settings
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Canada; Palliative Care; pediatrics; Bangladesh; controlled study; female; human; major clinical study; male; child health; palliative therapy; total quality management; India; pediatrician; skill; clinical examination; conference abstract; Philippines; learning; rotation; leadership; teaching; rigor; career; mentor; running; resource limited setting; Southeast Asia
Creator
An entity primarily responsible for making the resource
Palat G; Doherty M; Brown S; Shah A
Description
An account of the resource
Objective To describe the development and implementation of a 1-year 'Hybrid' Pediatric Palliative Care (PPC) Fellowship, which includes both clinical and online learning to train paediatricians as specialists and leaders in paediatric palliative care in South and Southeast Asia. Methods Globally, 97% of children needing palliative care (PC) live in low- or middle-income countries, where access is often very limited. In India, less than 1% of the 1.6 million children needing PC can access these services. Building capacity and training opportunities for paediatricians are essential to improve access to PC in these settings. The Hybrid fellowship was developed through the existing partnership between Two Worlds Cancer Collaboration, Canada and the Hyderabad Centre for Palliative Care to train paediatricians as specialists and leaders in paediatric palliative care in South and Southeast Asia. A team of PPC experts developed the fellowship after a rigorous review of relevant literature and educational materials, incorporating their experiences running PPC traditional (in-person) fellowship programs in both high and lowerresourced settings. Results The fellowship includes formal teaching, clinical rotations, mentorship, regular assessments of trainees, and a scholarly project. Teaching includes 100 hours of weekly online classes, with a focus on case-based learning and leadership skills. Mandatory 4 months of clinical rotations in PC includes 2 months in the regional centre of PPC excellence in Hyderabad, India. Trainees' progression towards program competencies is assessed through written and observed standardised clinical examinations. A mentorship program provides additional support, which continues beyond the fellowship through an early career mentorship group. As a part of research and quality improvement (QI) training, fellows complete a scholarly project with support and supervision from experienced research mentors. More than 30 regional and international PPC experts contribute to the program as faculty. Since 2021, 6 paediatricians have completed the 'Hybrid' fellowship, from India (2), Bangladesh (1), and the Philippines (3), with 3 fellows currently in training. Graduated fellows have become regional and national leaders in PPC, developing new PPC programs, and implementing new PPC training in their home country. The program successfully sought endorsement from the Royal College of Paediatrics and Child Health (UK), which has strengthened the program's rigor and quality. Conclusion A 1-year Hybrid PPC Fellowship, which trains pediatricians to become specialists and champions of PPC, is an innovative model that can successfully build PPC capacity in resource-limited settings and increase access to PPC for children with life-limiting illnesses.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2023-rcpch.53" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.53</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 SE5 - Low Resource Setting
Archives of Disease in Childhood
Bangladesh
Brown S
Canada
career
Child
Child Health
clinical examination
conference abstract
Controlled Study
Doherty M
Female
Human
India
Leadership
Learning
Major Clinical Study
Male
mentor
Palat G
Palliative Care
Palliative Therapy
Pediatrician
Pediatrics
Philippines
resource limited setting
rigor
Rotation
running
Shah A
Skill
Southeast Asia
Teaching
Total Quality Management
-
Dublin Core
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Title
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September 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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September 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.06.025" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.06.025</a>
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Anxiety and depression in bereaved parents after losing a child due to life-limiting diagnoses: A Danish nationwide questionnaire survey
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
2019
Subject
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adult; article; child; female; human; major clinical study; male; controlled study; education; palliative therapy; anxiety; bereavement; questionnaire; Center for Epidemiological Studies Depression Scale; Denmark; depression; father; mother; single (marital status); young adult
Creator
An entity primarily responsible for making the resource
Lykke C; Ekholm O; Schmiegelow K; Olsen M; Sjogren P
Description
An account of the resource
CONTEXT: Losing a child is the most burdensome event parents can experience involving risks of developing anxiety and depression. OBJECTIVES: To investigate anxiety and depression in bereaved parents during their child's life-limiting illness and imminent death and three to five years after the loss to target future interventions. METHODS: A Danish nationwide cross-sectional questionnaire survey. From 2012 to 2014, a register-based study identified causes of deaths of 951 children aged zero to 18 years. Potential palliative diagnoses were classified according to previously used classification. A total of 402 families were included. A modified version of the self-administered questionnaire "To lose a child" was used. Non-response surveys identified reasons for lack of response. RESULTS: In all, 136 mothers and 57 fathers completed a questionnaire, representing parents of 152 children (38%). Sixty-five percent of mothers and 63% of fathers reported moderate-to-severe anxiety during the child's illness. However, three to five years after their loss anxiety had decreased markedly. Thirty-five percent of mothers and 39% of fathers reported moderate-to-severe depression during the child's illness; three to five years after the loss they were suffering equivalently from depression. The Center for Epidemiologic Studies Depression Scale indicated that severe depression was significantly associated with lower education and being unmarried. CONCLUSION: The reporting of anxiety during the child's illness and prolonged depression in bereaved parents three to five years after the loss indicates a potential need for psychological interventions. In the process of implementing specialized pediatric palliative care in Denmark, our findings should be considered for future treatment programs.
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.06.025" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.06.025</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Adult
anxiety
Article
Bereavement
Center for Epidemiological Studies Depression Scale
Child
Controlled Study
Denmark
Depression
Education
Ekholm O
Father
Female
Human
Journal of Pain and Symptom Management.
Lykke C
Major Clinical Study
Male
Mother
Olsen M
Palliative Therapy
Questionnaire
Schmiegelow K
September 2019 List
single (marital status)
Sjogren P
Young Adult
-
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Title
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November 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
November 2019 List
URL Address
<a href="http://doi.org/10.7748/ncyp.2019.e1199" target="_blank" rel="noreferrer noopener">http://doi.org/10.7748/ncyp.2019.e1199</a>
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Approaches to community-based palliative care provision by children's hospices in the UK
Publisher
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Nursing children and young people.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
advance care planning; child health; palliative nursing; article; child; controlled study; female; human; human experiment; Internet; major clinical study; male; out-of-hours care; prescription; questionnaire; registered nurse; telephone; workforce
Creator
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Tatterton MJ
Description
An account of the resource
The number of children in the UK with life-limiting conditions and the demand for home-based palliative care is increasing. Children's hospices remain a dominant provider of palliative care. This study aimed to determine the approaches taken by children's hospices across the UK in meeting the planned and unplanned health needs of children and their families who receive palliative care at home. In addition, the survey aimed to identify the professional composition of community teams and the number of children and families supported by each service. An internet-based questionnaire survey was sent to all children's hospices in the UK, comprising ten questions exploring the size of the team, geographical areas covered, workforce composition, services offered and approaches to managing unplanned, out of hours care. Responses were received from 14 (26%) of the hospices. A total of 1,618 children and their families were being cared for by these hospices, of whom 825 received care at home. Registered nurses constituted the greatest proportion of staff and were employed by all teams. Care provided at home was broadly split into two categories: planned short breaks and responsive palliative nursing. The latter comprised advance care planning, anticipatory prescribing and active symptom control. Out of hours care was usually offered in the form of telephone support. Models of community-based care are evolving to include nurses practising at specialist and advanced levels, allowing more children with increasingly complex conditions to be cared for at home.
Identifier
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<a href="http://doi.org/10.7748/ncyp.2019.e1199" target="_blank" rel="noreferrer noopener">10.7748/ncyp.2019.e1199</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).
2019
Advance Care Planning
Article
Child
Child Health
Controlled Study
Female
Human
Human Experiment
Internet
Major Clinical Study
Male
November 2019 List
Nursing children and young people.
out-of-hours care
palliative nursing
prescription
Questionnaire
registered nurse
Tatterton MJ
Telephone
workforce
-
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/10.1007/s00431-023-05030-z" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-023-05030-z</a>
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Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data
Publisher
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European Journal of 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
child; Cohort Studies; Belgium; Terminal Care; terminal care; article; female; human; major clinical study; male; palliative therapy; pediatrics; cohort analysis; physician; nuclear magnetic resonance imaging; health care system; general practitioner; decision making; bereavement; computer assisted tomography; congenital disorder; drawing; administrative health data; genetic association; genetic disorder; empirical research; paramedical personnel; X ray
Creator
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Piette V; Deliens L; Debulpaep S; Cohen J; Beernaert K
Description
An account of the resource
Abstract This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing children (1-17) who died with genetic and congenital conditions in Belgium between 2010 and 2017. We measured 22 quality indicators, face-validated using a previously published RAND/UCLA methodology. Appropriateness of care was defined as the overall "expected health benefit" of given healthcare interventions within a healthcare system exceeding expected negative outcomes. In the 8-year study period, 200 children were identified to have died with genetic and congenital conditions. Concerning appropriateness of care, in the last month before death, 79% of children had contact with specialist physicians, 17% had contact with a family physician, and 5% received multidisciplinary care. Palliative care was used by 17% of the children. Concerning inappropriateness of care, 51% of the children received blood drawings in the last week before death, and 29% received diagnostics and monitoring (2 or more magnetic resonance imaging scans, computed tomography scans, or X-rays) in the last month. Conclusion: Findings suggest end-of-life care could be improved in terms of palliative care, contact with a family physician and paramedics, and diagnostics and monitoring in the form of imaging. What is Known: • Previous studies suggest that end-of life care for children with genetic and congenital conditions may be subject to issues with bereavement, psychological concerns for child and family, financial cost at the end of life, decision-making when using technological interventions, availability and coordination of services, and palliative care provision. Bereaved parents of children with genetic and congenital conditions have previously evaluated end-of-life care as poor or fair, and some have reported that their children suffered a lot to a great deal at the end of life. • However, no peer-reviewed population-level quality evaluation of end-of-life care for this population is currently present. What is New: • This study provides an evaluation of the appropriateness of end-of-life care for children who died in Belgium with genetic and congenital conditions between 2010 and 2017, using administrative healthcare data and validated quality indicators. The concept of appropriateness is denoted as relative and indicative within the study, not as a definitive judgement. • Our study suggests improvements in end-of-life care may be possible, for instance, in terms of the provision of palliative care, contact with care providers next to the specialist physician, and diagnostics and monitoring in terms of imaging (e.g., magnetic resonance imaging, computed tomography scans). Further empirical research is necessary, for instance, into unforeseen and foreseen end-of-life trajectories, to make definitive conclusions about appropriateness of care.
Identifier
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<a href="http://doi.org/10.1007/s00431-023-05030-z" target="_blank" rel="noreferrer noopener">10.1007/s00431-023-05030-z</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
administrative health data
Article
August List 2043
Beernaert K
Belgium
Bereavement
Child
Cohen J
Cohort Analysis
Cohort Studies
computer assisted tomography
congenital disorder
Debulpaep S
Decision Making
Deliens L
Drawing
Empirical Research
European Journal of Pediatrics
Female
General Practitioner
genetic association
Genetic Disorder
Health Care System
Human
Major Clinical Study
Male
nuclear magnetic resonance imaging
Palliative Therapy
paramedical personnel
Pediatrics
Physician
Piette V
Terminal Care
X ray
-
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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November 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
November 2018 List
URL Address
<a href="http://doi.org/10.1080/00325481.2018.1512253" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/00325481.2018.1512253</a>
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Title
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Are pediatric patients just short adults? most commonly prescribed drugs for pediatric hospice patients
Publisher
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Postgraduate Medicine
Date
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2018
Subject
The topic of the resource
hospice patient;pediatric patient;acid;adult;cancer patient;central nervous system cancer;chi square test;Child;conference abstract;constipation;controlled study;corticosteroid;death;diagnosis;diazepam;diphenhydramine;drug formulation;drug therapy;dyspnea;Female;genetic disorder;haloperidol;hospice care;human;hyoscyamine;institutional review;laxative;Length of Stay;levetiracetam;lorazepam;macrogol;major clinical study;metoclopramide;morphine;nausea;ondansetron;opiate;pain;paracetamol;patient information;practice guideline;preschool child;prochlorperazine;retrospective study;salbutamol;seizure;unclassified drug;vitamin
Creator
An entity primarily responsible for making the resource
Sera L;Morgan J;McPherson ML
Description
An account of the resource
Purpose According to the most recently published data from National Hospice and Palliative Care Organization, approximately 78% of hospice providers in the United States serve pediatric patients, and the majority of these serve 1-10 patients per year. As with adult patients, palliative care for children focuses on holistic care, including the alleviation of physical, psychosocial, and spiritual suffering. Medications are used in hospice patients to palliate physical symptoms of terminal illness, including pain, dyspnea, nausea, and fatigue. The purpose of this study was to characterize the most commonly prescribed medications and medication classes in a population of pediatric hospice patients. Methods We conducted a retrospective review of a patient information database compiled by a national hospice organization. The database contained demographic information, as well as information on drug name, dosage, formulation, and strength. Medications were also characterized by pharmacological class. We compared proportions of the most commonly prescribed pharmacological classes among the three most common admitting diagnoses: cancer, central nervous system disorders, and genetic disorders. We used chi-square test or Fisher's exact test to detect any associations between admitting diagnosis and drug class. The institutional review board at the University of Maryland determined that this study was not human subjects research. Results Of 177 patients in the database, 116 patients were included in the study; these patients were admitted to hospice on or after January 1, 2011 and discharged by death on or before December 31, 2016. Sixty-one patients who were discharged prior to death were excluded. The average age of patients at admission was 6 years old (SD = 6.1) and 63% of patients were female. The median length of stay was 14.5 days (range: 0-411 days). A total of 3 017 medication orders were evaluated. Medication classes used for symptom management were most commonly prescribed. Six of the 10 most commonly prescribed drugs (morphine, lorazepam, acetaminophen, hyoscyamine, prochlorperazine, and haloperidol) were all included in the symptom management medication kits provided to most patients at admission. Other drugs prescribed for over 20% of patients included metoclopramide, diphenhydramine, albuterol, altropine, ondansetron, diazepam, polyethylene glycol, levetiracetam. Opioid analgesics, anxiolytics, anticholinergics, and antiemetics were prescribed to over 50% of patients at some point during admission. Other frequently prescribed medication classes non-opioid anageiscs, anticonvulsants, antiinfectives, laxatives, corticosteroids, acid reducers, antipsychotics, and vitamins/supplements. Of the 20 most commonly prescribed drug classes, patients with cancer were significantly more likely than those with CNS disorders or genetic disorders to be prescribed anticholinergics (p = 0.03), antiemetics (p < 0.0001), non-opioid analgesics (p = 0.003), laxatives (p = 0.003), corticosteroids (p = 0.0004), antihistamines (p = 0.01), acid reducers (p = 0.03), and antipsychotics (p < 0.0001). Conclusions Medications commonly prescribed for children receiving hospice care include those intended to treat symptoms including pain, dyspnea, nausea, seizures, and constipation. A general understanding of medications used in hospice care may be helpful in the development of educational materials, medications guidelines and protocols, and questions for future research.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/00325481.2018.1512253" target="_blank" rel="noreferrer noopener">10.1080/00325481.2018.1512253</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
acid
Adult
Cancer Patient
central nervous system cancer
Chi Square Test
Child
conference abstract
Constipation
Controlled Study
Corticosteroid
Death
Diagnosis
diazepam
diphenhydramine
drug formulation
Drug Therapy
Dyspnea
Female
Genetic Disorder
Haloperidol
Hospice Care
hospice patient
Human
hyoscyamine
Institutional Review
laxative
Length Of Stay
levetiracetam
Lorazepam
macrogol
Major Clinical Study
McPherson ML
metoclopramide
Morgan J
Morphine
Nausea
November 2018 List
ondansetron
Opiate
Pain
Paracetamol
patient information
pediatric patient
Postgraduate Medicine
Practice Guideline
Preschool Child
prochlorperazine
Retrospective Study
salbutamol
Seizure
Sera L
Unclassified Drug
vitamin
-
Dublin Core
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Title
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December 2022 List
Text
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Citation List Month
December List 2022
URL Address
<a href="http://doi.org/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.29952</a>
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At the End of Life: Pediatric Palliative Care Can Make a Difference in Caring for the Child and Family
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
2022
Subject
The topic of the resource
agitation; anxiety; cancer patient; care behavior; child; conference abstract; controlled study; demography; dyspnea; fear; female; hospital mortality; human; intensive care unit; irritability; leukemia; major clinical study; male; middle income country; pain; palliative therapy; pediatric patient; quasi experimental study; retrospective study; school child; seizure; skill; social needs; terminal care; ward
Creator
An entity primarily responsible for making the resource
Cuervo M; Garcia X; Molina K; Claros A; Bolanos J; Alvarez T; Cleves D
Description
An account of the resource
Background and Aims: WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family, the aim of this study is to describe the endof-life care of children with cancer during the end-of-life period who receive general palliative care or pediatric palliative care in low- and middle-income countries. Method(s): We conducted a retrospective quasi-experimental study between January 2013 and December 2020 with deceased pediatric cancer patients. Demographic and clinical variables were collected to describe end-of-life care received before (2013-2017) by general palliative care team and after (2018-2020) the creation of a pediatric palliative care team Results: A total of 180 pediatric patients were evaluated at the end of life (100 between 2013-2017 and 80 between 2018-2020). The median age was 11 years, regardless of sex. Half of the patients had a diagnosis of leukemia (49.8%), 52.7% receive palliative treatment for their oncological condition. Regarding symptoms, 72 hours before death, pain treatment was documented for 52.2% of the patients. Other signs and symptoms, such as dyspnea, seizures, agitation, and irritability, were present, with no differences between groups; however, it was noted that during PPC interventions, there was a significant reduction in anxiety or fear of end of life, we observed a greater number of interventions by the psychosocial professionals and also there was an increase in the number of patients who died in the hospital ward and a decrease in the number of patients who died in the intensive care unit. Conclusion(s): Pediatric palliative care requires special knowledge and skills, the provision of PPC for children with cancer allows patients and their families to receive support that alleviates the physical, emotional and social needs that arise from a life-limiting illness and finally receive high-quality end-of-life care.
Identifier
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<a href="http://doi.org/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener">10.1002/pbc.29952</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).
2022
Agitation
Alvarez T
anxiety
Bolanos J
Cancer Patient
care behavior
Child
Claros A
Cleves D
conference abstract
Controlled Study
Cuervo M
December List 2022
Demography
Dyspnea
Fear
Female
Garcia X
Hospital Mortality
Human
Intensive Care Unit
Irritability
Leukemia
Major Clinical Study
Male
middle income country
Molina K
Pain
Palliative Therapy
Pediatric Blood and Cancer
pediatric patient
quasi experimental study
Retrospective Study
School Child
Seizure
Skill
social needs
Terminal Care
ward
-
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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November 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
November 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537853.70857.ca" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537853.70857.ca</a>
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Attitudes of the four groups of population toward end-of-life care of their child: A nationwide survey
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
terminal care;adult;cancer patient;caregiver;Child;conference abstract;controlled study;Female;health care system;hospice;human;life sustaining treatment;lifespan;major clinical study;Male;multicenter study;palliative therapy;pediatric patient;physician;population group;questionnaire
Creator
An entity primarily responsible for making the resource
Kim YS;Choi YH;Lee B;Park JD;Yun YH
Description
An account of the resource
Aims & Objectives: Preference for care in dying children is important for the quality of end-of-life care but little is known about attitudes of the relatives of the children toward the preference according to the expected life span. Methods We conducted a national survey about the preference for care in dying of pediatric patients in four participants groups. Results We analyzed nationwide questionnaires of total 4,154 participants; 928 physicians from the 12 hospitals and the Korean Medical Association, 1,241 general population, 979 adult cancer patients, and 1,006 family caregivers from 12 general hospitals. The preference for aggressive treatment or life-sustaining treatment (LST) decreased and the preference for hospice-palliative care (HPC) increased according to the decrease of expected life span in all the groups. The positive preference for aggressive treatment is significantly higher in the patients and family caregivers groups than in the physicians group. The preference for LST is significantly higher in the three groups compare to the physicians group 6. But the preference for HPC is significantly lower in these groups compare to the physicians group. Conclusions The preferences for aggressive treatment, LST and HPC have changed according to the decrease of expected life span, and were different among the population group. Communication program and health care systems to reduce the gap of the preferences between the general population, patients or family carefivers and physicians are needed.
Identifier
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<a href="http://doi.org/10.1097/01.pcc.0000537853.70857.ca" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537853.70857.ca</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
Adult
Cancer Patient
Caregiver
Child
Choi YH
conference abstract
Controlled Study
Female
Health Care System
Hospice
Human
Kim YS
Lee B
Life Sustaining Treatment
Lifespan
Major Clinical Study
Male
Multicenter Study
November 2018 List
Palliative Therapy
Park JD
Pediatric Critical Care Medicine
pediatric patient
Physician
population group
Questionnaire
Terminal Care
Yun YH
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2018 List
URL Address
<a href="http://doi.org/10.1186/s12904-018-0274-8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-018-0274-8</a>
Dublin Core
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Title
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Barriers and facilitators to the implementation of a paediatric palliative care team
Publisher
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BMC Palliative 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
health care personnel; palliative therapy; Child; Only Child; Palliative Care; Pilot Projects; human experiment; major clinical study; pilot study; expectation; concrete; child; human; female; male; pediatrics; article; awareness; patient satisfaction; tertiary health care
Creator
An entity primarily responsible for making the resource
Verberne LM; Kars MC; Schepers SA; Schouten-Van Meeteren AYN; Grootenhuis MA; Van Delden JJM
Description
An account of the resource
Background: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC). However, implementing a PPCT into an organisation is a challenge. The objective of this study was to identify barriers and facilitators reported by healthcare professionals (HCPs) in primary, secondary or tertiary care for implementing a newly initiated multidisciplinary PPCT to bridge the gap between hospital and home. Methods: The Measurement Instrument for Determinants of Innovations (MIDI) was used to assess responses of 71 HCPs providing PPC to one or more of the 129 children included in a pilot study of a PPCT based at a university children's hospital. The MIDI (29 items) assessed barriers and facilitators to implementing the PPCT by using a 5-point scale (completely disagree to completely agree) and additional open-ended questions. Items to which >=20% of participants responded with 'totally disagree/disagree' and >=80% responded with 'agree/totally agree' were considered as barriers and facilitators, respectively. A general inductive approach was used for open-ended questions. Results: Reported barriers to implementing a PPCT were related to the HCP's own organisation (e.g., no working arrangements related to use of the intervention [PPCT] registered, other organisational changes such as merger going on). Reported facilitators were mainly related to the intervention (correctness, simplicity, observability and relevancy) and the user scale (positive outcome expectations, patient satisfaction) and only once to the organisation scale (information accessibility). Additionally, HCPs expressed the need for clarity about tasks of the PPCT and reported having made a transition from feeling threatened by the PPCT to satisfaction about the PPCT. Conclusion: Positive experiences with the PPCT are a major facilitator for implementing a PPCT. Tailored organisational strategies such as working arrangements by management, concrete information about the PPCT itself and the type of support provided by the PPCT should be clearly communicated to involved HCPs to increase awareness about benefits of the PPCT and ensure a successful implementation. New PPCTs need protection and resources in their initial year to develop into experienced and qualified PPCTs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-018-0274-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0274-8</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
Article
Awareness
BMC Palliative Care
Child
concrete
Expectation
Female
Grootenhuis MA
Health Care Personnel
Human
Human Experiment
Kars MC
Major Clinical Study
Male
Only Child
Palliative Care
Palliative Therapy
Patient Satisfaction
Pediatrics
Pilot Projects
Pilot Study
Schepers SA
Schouten-Van Meeteren AYN
tertiary health care
van Delden JJM
Verberne LM
-
Dublin Core
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Title
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August 2023 List
Text
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Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1089/jpm.2022.0580" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2022.0580</a>
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Title
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Barriers to Pediatric Palliative Care: Trainee and Faculty Perspectives Across Two Academic Centers
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
child; Palliative Care; United States; article; controlled study; female; human; major clinical study; male; perception; palliative therapy; prognosis; resident; education; physician; life sustaining treatment; communication barrier; multicenter study; thematic analysis; pediatric hospital; personnel shortage
Creator
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Levine A; Winn PA; Fogel AH; Lelkes E; McPoland P; Agrawal AK; Bogetz JF
Description
An account of the resource
Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers to palliative care across two pediatric centers to (1) examine differences between trainees and faculty and (2) compare these data with previous studies. <br/>Method(s): A mixed-methods study was conducted in fall 2021 among pediatric trainees and faculty physicians at three pediatric hospitals in two pediatric centers in the western United States. Surveys were distributed through hospital listservs and analyzed descriptively and through inductive thematic analysis. <br/>Result(s): There were a total of 268 participants: 50 trainees and 218 faculty physicians. Of the trainees, 46% (23) were fellows and 54% (27) were pediatric residents. Trainees and faculty reported the same four most common barriers, which were consistent with previous studies: family not ready to acknowledge an incurable condition (64% trainees and 45% faculty); family preference for more life-sustaining therapies than staff (52% and 39%); uncertain prognosis (48% and 38%); and parent discomfort with possibility of hastening death (44% and 30%). Other barriers commonly reported included time constraints, staff shortages, and conflict among family about treatment goals. Language barriers and cultural differences were also cited. <br/>Conclusion(s): This study examining palliative care across two pediatric centers suggests that providers' perceptions of family preferences and understanding of illness persist as barriers to the delivery of pediatric palliative care services. Future research should examine family-centered and culturally mindful interventions to better elucidate family perspectives on their child's illness to align care.
Identifier
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<a href="http://doi.org/10.1089/jpm.2022.0580" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0580</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
Agrawal AK
Article
August List 2038
Bogetz JF
Child
Communication Barrier
Controlled Study
Education
Female
Fogel AH
Human
Journal of Palliative Medicine
Lelkes E
Levine A
Life Sustaining Treatment
Major Clinical Study
Male
McPoland P
Multicenter Study
Palliative Care
Palliative Therapy
Pediatric Hospital
Perception
personnel shortage
Physician
Prognosis
Resident
Thematic Analysis
United States
Winn PA
-
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
August 2018 List
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).
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 2018 List
URL Address
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216318769196</a>
Dublin Core
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Title
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Barriers to research with children and young people with life-limiting conditions and their families: A survey of chief investigators' views, experiences and proposed solutions
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
human; child; female; male; major clinical study; conference abstract; patient referral; scientist; funding; intervention study; thinking; clinical research; embedding; publication; visibility
Creator
An entity primarily responsible for making the resource
Peake J; Beecham E; Oostendorp L; Hudson B; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M
Description
An account of the resource
Background/aims: Undertaking research with children and young people (CYP) with life-limiting conditions (LLC) and life threatening illnesses (LTI) is challenging. Previous research has highlighted barriers, such as obtaining ethics approval and clinician gatekeeping, that delay research or result in studies not recruiting to target. This study aimed to provide more in-depth insight on the views, experiences and solutions of Chief Investigators (CIs) recruiting CYP with LLC and LTI and their families in the UK. Methods: We developed an online survey based on a scoping review of the literature and previous rapid survey. The new survey contained closed and open-ended questions and was divided into 3 sections: (1) the CI's most recent project; (2) the CI's overall experience of research with this population; (3) demographic information. Participants were 61 CIs conducting studies with CYP with LLC and LTI and families, identified from the UK NIHR Clinical Research Network Portfolio. Results: Chief investigators reported funding (51%) to be the biggest barrier to research with this population, followed by institutional factors (e.g. research and development approval) (11%) and clinician factors (e.g. gatekeeping) (9%). CIs suggested several generic solutions (e.g. having a well thought out question and methodology to improve chances of obtaining funding). Solutions that were particularly relevant included embedding researchers in clinical teams, involving CYP and families early on in the research process, meeting the specific needs of CYP and families and designing clear and age appropriate written information for CYP. Given the usually low number of eligible CYP, inclusion criteria should be broad and investigators should be aware of the complexity of approvals required for multi-centre studies. Researchers should invest in developing good relationships with clinicians to reduce gatekeeping and attempt to interest them in studies other than intervention trials, which are quite common in this population. Conclusions: The involvement of clinicians, CYP and families at the inception of studies should be considered a priority for research with CYP with LLC and LTI and families. Other potential strategies include increasing the visibility of research, embedding researchers in clinical teams, having clinician research champions, and acknowledging in peerreviewed manuscripts those clinicians who do recruit to studies.
Identifier
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<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</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
August 2018 List
Beecham E
Bluebond-Langner M
Child
Clinical Research
conference abstract
embedding
Female
Funding
Hudson B
Human
intervention study
Jones L
Lakhanpaul M
Major Clinical Study
Male
Oostendorp L
Palliative Medicine
Patient Referral
Peake J
publication
Scientist
Stone P
thinking
visibility
-
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 2018 List
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).
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 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.29007.abstract" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.29007.abstract</a>
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Title
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Beyond mortality: Assessing pediatric palliative needs
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
2018
Subject
The topic of the resource
human; child; female; male; diagnosis; controlled study; palliative therapy; pain; major clinical study; conference abstract; patient referral; neonatal intensive care unit; needs assessment; hematology; oncology; pediatric intensive care unit; resident; general practitioner; hospital patient; questionnaire; morbidity; mortality; bone marrow transplantation; heme; nausea; surgery; tertiary health care
Creator
An entity primarily responsible for making the resource
Murtha TD; Gielissen K; Marquez A; Prozora S; Massaro S
Description
An account of the resource
Description: Background: Pediatric palliative care is an interdisciplinary service that works to enhance the quality of life for children with serious illness. Unfortunately, the need for palliative care is difficult to ascertain and is often inaccurately based on mortality data, specifically the incidence of complex chronic conditions (CCC) at the time of death. These rates based on mortality vary among pediatric patients from 27-60% nationally, with 21% of US pediatric deaths being directly attributable to a CCC. Aim: This study seeks to understand the palliative care needs of an inpatient pediatric population, which we hypothesize will be substantial. Design: A cross-sectional survey was performed using a palliative care referral questionnaire, identifying the following characteristics among pediatric inpatients: 1) serious, life-limiting diagnosis, 2) frequent admissions and escalating care requirements, 3) persistent, poor symptom control, 4) need to clarify the goals of care, or 5) none of the above apply. Setting/Participants: Senior pediatric residents completed the palliative care needs assessment for pediatric patients upon admission to Yale New Haven Children's Hospital in the Fall of 2015. Patients admitted to the pediatric intensive care unit (PICU), hematology, oncology, and bone marrow transplant unit (Heme/Onc/BMT), and to the general medical units under a hospitalist, primary care physician, or subspecialty physician were included. Neonatal intensive care unit and exclusively surgical (non-PICU) patients were excluded. Results: 273 questionnaires were completed over 3 weeks. Nearly 45% of patients (n =122) met at least one palliative care referral criterion. Most patients were identified as having a serious illness (74%), with 70% meeting additional palliative care referral criteria (63/90). In fact, 21% of patients with a serious, life-limiting diagnosis met all four criteria (n = 19). On note, poor symptom control was reported in 55% of patients with positive surveys, comprising 25% of all patients surveyed (67/273), some of whom did not have a serious, life-limiting diagnosis. Data was further evaluated based on location of admission, with 75% of PICU patients (44/59), 56% of Heme/Onc/BMT admissions (25/45), and 31% of general/subspecialty patients meeting at least one palliative care referral criterion. Conclusions: This study identifies a considerable need for palliative care among pediatric inpatients at a tertiary care children's hospital. The results are consistent with national trends among dying patients, but the current study acts to supplement the existing literature by characterizing the need for palliative medicine based on morbidity among living patients. This approach allowed for recognition of the 25% of pediatric inpatients suffering from poor symptom control, such as pain or nausea, who could benefit from pediatric palliative care consultation. Furthermore, these data help to clarify where palliative care services are most urgently needed within the hospital, and can guide the distribution of resources.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2018.29007.abstract" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.29007.abstract</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
August 2018 List
Bone Marrow Transplantation
Child
conference abstract
Controlled Study
Diagnosis
Female
General Practitioner
Gielissen K
Hematology
heme
Hospital Patient
Human
Journal of Palliative Medicine
Major Clinical Study
Male
Marquez A
Massaro S
Morbidity
Mortality
Murtha TD
Nausea
Needs Assessment
Neonatal Intensive Care Unit
Oncology
Pain
Palliative Therapy
Patient Referral
Pediatric Intensive Care Unit
Prozora S
Questionnaire
Resident
Surgery
tertiary health care
-
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
March 2017 List
Dublin Core
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Title
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Bringing Home To The Hospital: Development Of The Reflection Room And Provider Perspectives
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
2017
Subject
The topic of the resource
Intensive Care Unit; Posthumous Care; Terminal Care; Child; Family; Hospital Patient; Human; Major Clinical Study; Model; Privacy; Quantitative Study; Staff; United States
Creator
An entity primarily responsible for making the resource
Vesely C; Newman V; Winters Y; Flori H
Description
An account of the resource
Background: Alternative locations for children near end of life (EOL) are lacking in the United States with deaths largely occurring within intensive care units (ICUs). The reflection room (RR) was implemented as a relevant space for providing this care in our hospital. Objective: We hypothesized staff would report a positive experience in providing EOL and/or postmortem (PM) care here and would recommend this to peers. Design: This explorative study summarized room use data and evaluated staff experiences using a voluntary qualitative and quantitative survey. Subjects: The survey was administered to the inpatient interdisciplinary team. Results: From 2011 to 2014, 116 children used the RR, 64% for PM care, and 34% for EOL care. A total of 201 staff responded to the survey. Of them, 90% described the space as a valuable resource to families, 90% reported a preference for using this location versus a hospital unit, and 93% stated they would encourage their peers to do the same. Advantages listed were increased privacy, allowance for more visitors, and a quieter, calmer environment. Challenges included distance from the unit of transfer, managing assignments in two hospital locations, and medication transportation. Overall, there was a measureable decrease in the number of deaths pronounced in the ICU as the number pronounced in the RR increased, illustrating a significant change in practice. Conclusion: This study demonstrated an overwhelmingly positive experience in providing EOL and/or PM care to children in the RR and staff would recommend this to peers. This model of care should be a serious consideration for hospitals in the United States. © Copyright 2017, Mary Ann Liebert, Inc.
Identifier
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10.1089/jpm.2016.0070
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Child
Family
Flori H
Hospital Patient
Human
Intensive Care Unit
Journal of Palliative Medicine
Major Clinical Study
March 2017 List
Model
Newman V
Posthumous Care
Privacy
Quantitative Study
Staff
Terminal Care
United States
Vesely C
Winters Y
-
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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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September 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
September 2019 List
URL Address
<a href="http://doi.org/10.1177/0269216319860662" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319860662</a>
Dublin Core
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Title
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Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
death; article; child; female; human; major clinical study; male; palliative therapy; social support; decision making; ethics; thematic analysis; trisomy 13; trisomy 18; trust; adverse event; clinician; disability; questionnaire
Creator
An entity primarily responsible for making the resource
Janvier A; Farlow B; Barrington KJ; Bourque CJ; Brazg T; Wilfond B
Description
An account of the resource
BACKGROUND: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare providers have not been well described. AIM: (1) To investigate parental experiences with clinicians and (2) to provide practical recommendations and behaviors clinicians could emulate to avoid conflict. DESIGN: Participants were asked to describe their best and worse experiences, as well as supportive clinicians they met. The results were analyzed using mixed methods. SETTING/PARTICIPANTS: Parents of children with trisomy 13 and 18 who were part of online social support networks. A total of 503 invitations were sent, and 332 parents completed the questionnaire about 272 children. RESULTS: The majority of parents (72%) had met a supportive clinician. When describing clinicians who changed their lives, the overarching theme, present in 88% of answers, was trust. Parents trusted clinicians when they felt he or she cared and valued their child, their family, and made them feel like good parents (69%), had appropriate knowledge (66%), and supported them and gave them realistic hope (42%). Many (42%) parents did not want to make-or be part of-life-and-death decisions. Parents gave specific examples of supportive behaviors that can be adopted by clinicians. Parents also described adverse experiences, generally leading to conflicts and lack of trust. CONCLUSION: Realistic and compassionate support of parents living with children with trisomy 13 and 18 is possible. Adversarial interactions that lead to distrust and conflicts can be avoided. Many supportive behaviors that inspire trust can be emulated.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216319860662" target="_blank" rel="noreferrer noopener">10.1177/0269216319860662</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).
2019
adverse event
Article
Barrington KJ
Bourque CJ
Brazg T
Child
Clinician
Death
Decision Making
Disability
Ethics
Farlow B
Female
Human
Janvier A
Major Clinical Study
Male
Palliative Medicine
Palliative Therapy
Questionnaire
September 2019 List
Social Support
Thematic Analysis
Trisomy 13
Trisomy 18
Trust
Wilfond 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
February 2020 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
February 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2019.10.039" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpeds.2019.10.039</a>
Dublin Core
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Title
A name given to the resource
Center, Gestational Age, and Race Impact End-of-Life Care Practices at Regional Neonatal Intensive Care Units
Publisher
An entity responsible for making the resource available
Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; Black person; cause of death; central nervous system; child; cohort analysis; controlled study; do not resuscitate order; drug withdrawal; female; gestational age; human; infant; injury; life sustaining treatment; major clinical study; male; Neonatal Intensive Care Unit; newborn; newborn death; retrospective study; terminal care
Creator
An entity primarily responsible for making the resource
Fry J T; Matoba N; Datta A; DiGeronimo R; Coghill C H; Natarajan G; Brozanski B; Leuthner S R; Niehaus J Z; Schlegel A B; Shah A; Zaniletti I; Bartman T; Murthy K; Sullivan K M; Asselin J; Durand D; Dykes F; Evans J; Padula M; Pallotto E; Grover T; Piazza A; Reber K; Short B
Description
An account of the resource
Objective: To assess the impact of intercenter variation and patient factors on end-of-life care practices for infants who die in regional neonatal intensive care units (NICUs). Study design: We conducted a retrospective cohort analysis using the Children's Hospital Neonatal Database during 2010-2016. A total of 6299 nonsurviving infants cared for in 32 participating regional NICUs were included to examine intercenter variation and the effects of gestational age, race, and cause of death on 3 end-of-life care practices: do not attempt resuscitation orders (DNR), cardiopulmonary resuscitation within 6 hours of death (CPR), and withdrawal of life-sustaining therapies (WLST). Factors associated with these practices were used to develop a multivariable equation.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2019.10.039" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2019.10.039</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).
2019
Article
Asselin J
Bartman T
Black person
Brozanski B
Cause Of Death
Central Nervous System
Child
Coghill C H
Cohort Analysis
Controlled Study
Datta A
DiGeronimo R
do not resuscitate order
Drug Withdrawal
Durand D
Dykes F
Evans J
February 2020 List
Female
Fry J T
Gestational Age
Grover T
Human
Infant
injury
Journal of Pediatrics
Leuthner S R
Life Sustaining Treatment
Major Clinical Study
Male
Matoba N
Murthy K
Natarajan G
Neonatal Intensive Care Unit
Newborn
Newborn Death
Niehaus J Z
Padula M
Pallotto E
Piazza A
Reber K
Retrospective Study
Schlegel A B
Shah A
Short B
Sullivan K M
Terminal Care
Zaniletti I
-
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/A64.3" target="_blank" rel="noreferrer noopener">https://adc.bmj.com/content/104/Suppl_3/A64.3</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
Challenges experienced by paediatricians providing palliative care to children; A thematic analysis
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
death; child; female; human; major clinical study; male; palliative therapy; controlled study; thematic analysis; human experiment; learning; pediatrics; conference abstract; questionnaire; e-mail; pediatrician; health care system; needs assessment; Australia; expectation; holistic care; social welfare; specialist registrar
Creator
An entity primarily responsible for making the resource
Balfe J; Whitla L; Devins M; Molloy E; Twomey M; O'Reilly M
Description
An account of the resource
Background: and aim Palliative Care for Children is defined as 'an active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond'. It is recognised that the prevalence of children with life-limiting conditions (LLC) is increasing. In Ireland the majority of children with LLC are cared for by paediatricians working in hospitals with no direct access to specialist paediatric palliative care(PPC) services. This study was part of a learning needs assessment of paediatrician's training and experience in PPC. Method(s): Consultants and Specialist Registrars in Paediatrics were approached by email and asked to complete a questionnaire regarding their learning needs in PPC. The Quality of Care Collaborative for Australia in PPC Project Research Study Group Learning Needs Assessment template was used with permission. The questionnaire included both multiple choice and free-text questions. Quantitative data from the study has been reported elsewhere. Thematic analysis based on the approach of Braun and Clarke (2006) was used to analyse data provided in the free-text answers. Result(s): 114 paediatricians responded to the survey, 72 respondents (63%) provided free-text answers to the question 'Reflecting on your most recent clinical interactions with children requiring palliative care support. What were the challenges?' On analysis, three overarching themes emerged, 'Best interests of the child', 'Inadequate training and confidence' and 'Co-ordinating care'. 'Best interests of the child' referred to the challenges experienced in ensuring that best interests of the child remain at the core of all decisions made when providing palliative care. This overarching theme included two sub-themes 'Complex communication' which referred to the challenges in managing parental expectations in increasingly technologically advanced healthcare systems and 'First do no harm' referring to the frequent ethical dilemmas that arise in PPC. 'Inadequate adequate training and confidence' referred to lack of specific education in complex symptom management and also to lack of familiarity with community based healthcare services. The theme of 'coordinating care' encompassed the need to liaise with community services but also the need to provide holistic care to the whole family which may be unfamiliar paediatricians working in an acute hospital setting. Conclusion(s): This study explores the challenges experienced by paediatricians providing palliative care to children with LLCs. The themes provide insight into those experiences and provides valuable direction to support the development of future educational programmes in this important and rapidly evolving paediatric sub-speciality.
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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
Archives of Disease in Childhood
Australia
Balfe J
Child
conference abstract
Controlled Study
Death
Devins M
E-mail
Expectation
Female
Health Care System
Holistic Care
Human
Human Experiment
Learning
Major Clinical Study
Male
Molloy E
Needs Assessment
O'Reilly M
October 2019 List
Palliative Therapy
Pediatrician
Pediatrics
Questionnaire
Social Welfare
specialist registrar
Thematic Analysis
Twomey M
Whitla 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
August 2018 List
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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).
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 2018 List
URL Address
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216318769196</a>
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Title
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Challenges in assessing the need for beds in palliative care-The example of inpatient hospice care for children, adolescents and young adults
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
human; child; female; male; palliative therapy; diagnosis; death; Likert scale; psychosocial care; adult; home care; major clinical study; conference abstract; young adult; artificial ventilation; Germany; occupation; semi structured interview; long term care; resident; quantitative analysis; disabled person; funding; hospital patient; mortality; statistics; prevalence; hospice care; calculation; length of stay; politics
Creator
An entity primarily responsible for making the resource
Jaspers B; Jansky M; Nauck F
Description
An account of the resource
Background: Inpatient hospice care (IHC) for adults in Germany is used in the last weeks of life. Children, adolescents and young adults (ACA) with life-limiting diseases are entitled to 28 days/year of IHC during their lifetime. We explored various data to assess the need for IHC for ACA in North Rhine-Westphalia (NRW; 17.6 million inhabitants). Methods: Quantitative: All local hospices (n=5; 52 beds) and the single palliative care unit (PCU) for ACA were asked to contribute data on service provision, e.g. patient numbers and characteristics, occupation rate (OcR), length of stay. All local specialist palliative home care teams (n=6) (SAPV) for ACA were asked to estimate the percentage of ACA for whom they arranged IHC and in which timely manner (6-point Likert scale). Qualitative semi-structured interviews (hospices; SAPV; PCU) covering aspects such as access, barriers to access, needs coverage, impact of newly implemented SAPV on need, unmet demand for other services, funding politics and networking. Further data (reference year 2015): a) mortality statistics-% of all ACA in NRW dying from cancer (< 20 years)/non-cancer diseases according to the 4 ACT disease groups (< 25 years); b) prevalence estimates. Results: The 4 responding hospices had cared for 81-127 patients; average stay: 8-10 days, OcR: 60-90%. Cancer accounted for 1-20% of admissions, severe multi-handicapped ACA were 29-80%, 0-15% had no clear diagnosis. Hospices, SAPV and PCU teams saw no need for further hospice beds for ACA in NRW. They reported a lack of short and long-term care facilities for ACA in need of intensive medical care (and/or invasive ventilation) as well as of ambulatory psychosocial care and care management. Of the 1383 deaths (0-24 years) 47.1% were >1 year old, 62.3% of those < 20 years and 33.4% of those from 20-24 years had diseases according to the ACT groups and were probably in need of IHC. Different calculation models for prevalence will be discussed. Conclusion: Estimating the need for hospice beds for ACA remains difficult for various reasons: a) lack of valid prevalence statistics of relevant diseases, b) mortality statistics underestimate palliative care need, c) data protection regulations prohibit data exchange between hospices, d) local data do not capture the fact that residents from all German States are entitled to use IHC in NRW, and e) therefore an estimation would have to triangulate data from all relevant services for ACA across Germany.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</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
Adult
Artificial Ventilation
August 2018 List
calculation
Child
conference abstract
Death
Diagnosis
disabled person
Female
Funding
Germany
Home Care
Hospice Care
Hospital Patient
Human
Jansky M
Jaspers B
Length Of Stay
Likert scale
Long Term Care
Major Clinical Study
Male
Mortality
Nauck F
occupation
Palliative Medicine
Palliative Therapy
Politics
Prevalence
psychosocial care
quantitative analysis
Resident
Semi Structured Interview
Statistics
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
March 2023 List
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).
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
March List 2023
URL Address
<a href="http://doi.org/10.1007/s00431-023-04806-7" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-023-04806-7</a>
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Title
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Challenges in Establishing Optimal Pediatric Palliative Care at the University Hospital in Slovenia
Publisher
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European Journal of 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
Palliative Therapy; Slovenia; university hospital; Article; Awareness; Child; clinical practice; doctor nurse relation; Education; employee; Female; Human; library; major clinical study; Male; nurse; Palliative Care; physician; psychologist; questionnaire; self evaluation; Slovenia
Creator
An entity primarily responsible for making the resource
Meglic J; Lisec A; Lepej D; Loboda T; Bertok S; Lesnik MP; Kreft HI; Ostir M; Ponjevic T; Meglic A
Identifier
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<a href="http://doi.org/10.1007/s00431-023-04806-7" target="_blank" rel="noreferrer noopener">10.1007/s00431-023-04806-7</a>
Description
An account of the resource
Abstract
The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early implementation of PPC. The aim of the study was to design starting points for the establishment of accessible PPC with early involvement of patients in a tertiary-level children’s hospital. An intervention, presentation, and discussion on PPC were offered by the hospital PPC team to all employees in the hospital. A total of 237 participants (physicians 30.4%, nurses 49.4%, psychologists 8.4%, and others) completed a questionnaire before and after the intervention. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. The results were analyzed using Pandas and SciPy libraries in Python. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. However, the self-assessment of their ability to perform PPC did not increase. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC.
Conclusions: More education and practical work tailored to the different professional profiles are needed, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.
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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
Article
Awareness
Bertok S
Child
Clinical Practice
doctor nurse relation
Education
employee
European Journal of Pediatrics
Female
Human
Kreft HI
Lepej D
Lesnik MP
library
Lisec A
Loboda T
Major Clinical Study
Male
March List 2023
Meglic A
Meglic J
Nurse
Ostir M
Palliative Care
Palliative Therapy
Physician
Ponjevic T
Psychologist
Questionnaire
Self Evaluation
Slovenia
University Hospital
-
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
February 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2019 List
URL Address
<a href="http://doi.org/10.1186/s13023-018-0868-5" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1186/s13023-018-0868-5</a>
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Title
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Challenges of palliative care in children with inborn metabolic diseases
Publisher
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Orphanet Journal of Rare Diseases
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
decision making; gastrointestinal tract; palliative therapy; major clinical study; retrospective study; preschool child; cohort analysis; home visit; patient referral; human; article; child; female; male; controlled study; adult; gastrointestinal symptom; attention; young adult; resuscitation; advance care planning; neurologic disease; metabolic disorder
Creator
An entity primarily responsible for making the resource
Hoell JI; Warfsmann J; Distelmaier F; Borkhardt A; Janssen G; Kuhlen M
Description
An account of the resource
Background: Our objective was to evaluate children with metabolic diseases in paediatric palliative home care (PPC) and the process of decision-making. This study was conducted as single-centre retrospective cohort study of patients in the care of a large specialized PPC team. Results: Between 01/2013 and 09/2016, 198 children, adolescents and young adults were in the care of our PPC team. Twenty-nine (14.6%) of these patients had metabolic conditions. Median age at referral was 2.6 years (0-24), median duration of care 352 days (3-2248) and median number of home visits 13 (1-80). Most patients are still alive (16; 55.2%). Median number of drugs administered was 5 (range 0-12), antiepileptics were given most frequently. Symptom burden was high in all children with metabolic disorders at referral and remained high throughout care. Predominant symptoms were gastrointestinal, respiratory and neurologic symptoms. Children with metabolic conditions, who were referred to PPC younger than 1 year of age had a shorter period of care and died earlier compared to those children, who were referred to PPC later in their lives (older than 10 years of age). Eleven (37.9%) of the children initially had no resuscitation restrictions and 7 (53.8%) of those who died, did so on ICU. Conclusions: About 15% of children with life-limiting conditions in PPC present with metabolic diseases. Symptom burden is high with neurologic, respiratory and gastrointestinal symptoms being the most frequent and most of those being difficult to treat. In these children, particular attention needs to be addressed to advance care planning.Copyright � 2018 The Author(s).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s13023-018-0868-5" target="_blank" rel="noreferrer noopener">10.1186/s13023-018-0868-5</a>
2018
Adult
Advance Care Planning
Article
Attention
Borkhardt A
Child
Cohort Analysis
Controlled Study
Decision Making
Distelmaier F
February 2019 List
Female
Gastrointestinal Symptom
gastrointestinal tract
Hoell JI
Home Visit
Human
Janßen G
Kuhlen M
Major Clinical Study
Male
Metabolic Disorder
Neurologic Disease
Orphanet Journal Of Rare Diseases
Palliative Therapy
Patient Referral
Preschool Child
Resuscitation
Retrospective Study
Warfsmann J
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
January 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
January 2018 List
URL Address
<a href="http://doi.org/10.1371/journal.pone.0187375" target="_blank" rel="noreferrer">http://doi.org/10.1371/journal.pone.0187375</a>
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Title
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Challenges to code status discussions for pediatric patients
Publisher
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Plos One
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Child; comfort; distress syndrome; Female; Human; major clinical study; Male; morality; nurse; pediatric ward; Questionnaire; resident; self report; student; vision
Creator
An entity primarily responsible for making the resource
Kruse KE; Batten J; Constantine ML; Kache S; Magnus D
Description
An account of the resource
Objectives: In the context of serious or life-limiting illness, pediatric patients and their families are faced with difficult decisions surrounding appropriate resuscitation efforts in the event of a cardiopulmonary arrest. Code status orders are one way to inform end-of-life medical decision making. The objectives of this study are to evaluate the extent to which pediatric providers have knowledge of code status options and explore the association of provider role with (1) knowledge of code status options, (2) perception of timing of code status discussions, (3) perception of family receptivity to code status discussions, and (4) comfort carrying out code status discussions. Design: Nurses, trainees (residents and fellows), and attending physicians from pediatric units where code status discussions typically occur completed a short survey questionnaire regarding their knowledge of code status options and perceptions surrounding code status discussions. Setting: Single center, quaternary care children's hospital. Measurements and main results: 203 nurses, 31 trainees, and 29 attending physicians in 4 high-acuity pediatric units responded to the survey (N = 263, 90% response rate). Based on an objective knowledge measure, providers demonstrate poor understanding of available code status options, with only 22% of providers able to enumerate more than two of four available code status options. In contrast, provider groups self-report high levels of familiarity with available code status options, with attending physicians reporting significantly higher levels than nurses and trainees (p = 0.0125). Nurses and attending physicians show significantly different perception of code status discussion timing, with majority of nurses (63.4%) perceiving discussions as occurring "too late" or "much too late" and majority of attending physicians (55.6%) perceiving the timing as "about right" (p<0.0001). Attending physicians report significantly higher comfort having code status discussions with families than do nurses or trainees (p0.0001). Attending physicians and trainees perceive families as more receptive to code status discussions than nurses (p<0.0001 and p = 0.0018, respectively). Conclusions: Providers have poor understanding of code status options and differ significantly in their comfort having code status discussions and their perceptions of these discussions. These findings may reflect inherent differences among providers, but may also reflect discordant visions of appropriate care and function as a potential source of moral distress. Lack of knowledge of code status options and differences in provider perceptions are likely barriers to quality communication surrounding end-of-life options.
Identifier
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<a href="http://doi.org/10.1371/journal.pone.0187375" target="_blank" rel="noreferrer">10.1371/journal.pone.0187375</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Batten J
Child
Comfort
Constantine ML
Distress Syndrome
Female
Human
January 2018 List
Kache S
Kruse KE
Magnus D
Major Clinical Study
Male
Morality
Nurse
pediatric ward
PLoS One
Questionnaire
Resident
Self Report
Student
vision
-
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
August 2018 List
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).
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 2018 List
URL Address
<a href="http://doi.org/10.1111/dmcn.13790" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.13790</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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Changing landscape of paediatric palliative care
Publisher
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Developmental Medicine and Child 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
human; child; female; male; palliative therapy; diagnosis; hospice; adult; major clinical study; retrospective study; conference abstract; young adult; epilepsy; mortality; morbidity; landscape; catering service; life event; medical care; muscle spasm
Creator
An entity primarily responsible for making the resource
Nallapeta N; Hills M
Description
An account of the resource
Introduction: Advancement in medical science and better health care has led to increased survival of children with complex neurodisability (cerebral palsy, neuromuscular, neuro-metabolic, and genetic disorders). Paediatric palliative care has traditionally been associated with looking after children with oncological conditions. This study looked into the role of hospices in children and young adults with complex neurodisability. Patients and method: A retrospective review of electronic case records looking at all admission (3 months period) to Martin House Children's Hospice (provides family-led care for families from across West, North, and East Yorkshire) was performed. Results: There were 192 admissions of children and young adults of which 180 (93.75%) admissions (152 children with 28 repeat admission) had complex neurodisability conditions. Thirty-five percent had some medical input during their stay. Of these, 3.3% were admitted to hospice for symptom control reason alone. Reason for medical review was varied and included specialist advice like spasm/epilepsy control. Fewer than 2% of children were end of life admissions. Although the neurodisability diagnosis varied, symptomatology and end of life events were common. Conclusion: Children with complex neurodisability with life limiting and life-threatening conditions have varied clinical needs. The role of hospice and palliative care is now shifting towards catering for morbidity rather than mortality in children. Hospice has a significant role in initiating and continuing specialist medical care and not just palliative medicine. Collaborative working pattern of neurodisability specialist and palliative care teams is essential to provide best care for these groups of children.
Identifier
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<a href="http://doi.org/10.1111/dmcn.13790" target="_blank" rel="noreferrer noopener">10.1111/dmcn.13790</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
Adult
August 2018 List
catering service
Child
conference abstract
Developmental Medicine and Child Neurology
Diagnosis
Epilepsy
Female
Hills M
Hospice
Human
landscape
life event
Major Clinical Study
Male
Medical Care
Morbidity
Mortality
muscle spasm
Nallapeta N
Palliative Therapy
Retrospective Study
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
February 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.360" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.360</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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Characteristics of a Perinatal Palliative Care Program Over 10 years
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
2018
Subject
The topic of the resource
infant; hospice; obstetrician; palliative therapy; major clinical study; retrospective study; comfort; medical record; patient referral; neonatal intensive care unit; neonatologist; conference abstract; human; child; female; male; controlled study; diagnosis; resuscitation; positive end expiratory pressure; genetics
Creator
An entity primarily responsible for making the resource
Doherty M; Dumond LG; Williams R; Stoppels N
Description
An account of the resource
Background: Perinatal Hospice is a relatively new component of pediatric palliative care, which supports families who are expecting the birth of a child with life-threatening or life-limiting condition. Parents in this situation have unique needs and often experience emotional isolation following their child's loss. This study explores the characteristics of babies and families referred for perinatal hospice, and provides descriptive analysis of diagnosis, interventions and outcomes.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.360" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.360</a>
2018
Child
Comfort
conference abstract
Controlled Study
Diagnosis
Doherty M
Dumond LG
February 2019 List
Female
Genetics
Hospice
Human
Infant
Journal of Pain and Symptom Management
Major Clinical Study
Male
Medical Record
Neonatal Intensive Care Unit
Neonatologist
obstetrician
Palliative Therapy
Patient Referral
positive end expiratory pressure
Resuscitation
Retrospective Study
Stoppels N
Williams R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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/10.1016/j.radonc.2019.05.017" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.radonc.2019.05.017</a>
Dublin Core
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Title
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Clinical practice and outcomes of palliative radiation therapy in pediatric oncology patients: An international comparison of experiences from two distinct countries and health care systems
Publisher
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Radiotherapy and Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
anorexia; article; bradycardia; brain metastasis; cancer palliative therapy; cancer radiotherapy; cancer survival; child; childhood cancer/rt [Radiotherapy]; clinical outcome; clinical practice; cohort analysis; follow up; human; leukemia/rt [Radiotherapy]; lymphoma/rt [Radiotherapy]; major clinical study; mucosa inflammation; neuroblastoma/rt [Radiotherapy]; opiate/dt [Drug Therapy]; opiate/pv [Special Situation for Pharmacovigilance]; osteosarcoma/rt [Radiotherapy]; pain/dt [Drug Therapy]; Palliative radiation therapy; Palliative therapy; pediatric patient; Pediatric radiation therapy; preschool child; priority journal; radiation dermatitis; radiation dose fractionation; radiation induced neoplasm; rectum hemorrhage; treatment outcome; treatment response; tumor growth
Creator
An entity primarily responsible for making the resource
Rao A D; Figueiredo M L S; Yegya-Raman N; Sehgal S; Chen Q; Alcorn S R; Chen M J; Ladra M; Villar R; Terezakis S A
Description
An account of the resource
Background and purpose: This study describes clinical outcomes of palliative radiation therapy (RT)for children treated in distinct health-care environments-the US where there is advanced integration of palliative resources and Brazil, a country in the process of developing provisions for pediatric palliative care. Methods and materials: Palliative RT cases of pediatric oncology patients aged <=21-years from 2010 to 2016 in two Brazil-based and one US-based (Johns Hopkins Hospital, JHH)academic centers were reviewed in this study. Result(s): Eighty-eight pediatric patients were treated to 131 lesions with palliative RT. Forty-nine patients from the JHH cohort comprised 84 cases and 39 patients from the Brazil cohort comprised 46 cases. The most common indication for palliative RT was pain (55% overall, 39% Brazil, 63% JHH). Sixty-seven percent of patients experienced a complete (CR)or partial response (PR)to palliative RT, 12% reported stable symptoms (SS), and 22% reported progressive symptoms (PS). The median survival from the end of palliative RT was 3.6 months (95% confidence interval (CI), 2.3-4.8 months). When treated with palliative RT for pain, 83% of patients experience CR/PR, facilitating reduction or discontinuation of opiates in 46% of these patients. Conclusion(s): Despite different practices, the clinical results using palliative RT for pediatric patients treated in two unique healthcare environments demonstrated it is an effective tool for pediatric oncology patients across systems. Copyright © 2019 Elsevier B.V.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.radonc.2019.05.017" target="_blank" rel="noreferrer noopener">10.1016/j.radonc.2019.05.017</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).
2019
Alcorn S R
Anorexia
Article
bradycardia
Brain Metastasis
Cancer Palliative Therapy
cancer radiotherapy
Cancer Survival
Chen M J
Chen Q
Child
Childhood Cancer/rt [radiotherapy]
Clinical Outcome
Clinical Practice
Cohort Analysis
Figueiredo M L S
Follow Up
Human
Ladra M
leukemia/rt [Radiotherapy]
lymphoma/rt [Radiotherapy]
Major Clinical Study
mucosa inflammation
neuroblastoma/rt [Radiotherapy]
Oncology 2019 List
Opiate/dt [drug Therapy]
opiate/pv [Special Situation for Pharmacovigilance]
osteosarcoma/rt [Radiotherapy]
Pain/dt [drug Therapy]
Palliative radiation therapy
Palliative Therapy
pediatric patient
Pediatric radiation therapy
Preschool Child
Priority Journal
radiation dermatitis
Radiation Dose Fractionation
radiation induced neoplasm
Radiotherapy and Oncology
Rao A D
rectum hemorrhage
Sehgal S
Terezakis S A
Treatment Outcome
treatment response
tumor growth
Villar R
Yegya-Raman N
-
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
n/a
URL Address
<a href="https://www.ncbi.nlm.nih.gov/pubmed/28255137" target="_blank" rel="noreferrer">https://www.ncbi.nlm.nih.gov/pubmed/28255137</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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Clinical spectrum of children receiving palliative care in Malaysian Hospitals
Publisher
An entity responsible for making the resource available
Medical Journal Of Malaysia
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Child Care;hospital;malaysia;palliative Therapy; Acute Lymphoblastic Leukemia; Adolescent; Adult; Bereavement; Caregiver; Cerebral Palsy; Child; Chromosome; Chromosome Aberration; Clinical Trial; Congenital Malformation; Controlled Clinical Trial; Controlled Study; Cross Sectional Study; Diagnosis; Duchenne Muscular Dystrophy; Education; Female; Follow Up; Hospital Admission; Human; Icd-10; Infant; Major Clinical Study; Malaysia; Male; Malignant Neoplasm; Multicenter Study; Needs Assessment; Newborn; Observational Study; Patient Referral; Pediatrician; Prognosis; Review; Spinal Muscular Atrophy
Creator
An entity primarily responsible for making the resource
Chong LA; Khalid F; Khoo TB; Teh SH; Kuan GL; Abdul Manaf AM; Alias E; Chieng CH; Razali H; Ong GB; Hedra ZS; Abdul Shukor INC; Wang JJ
Description
An account of the resource
Introduction: Awareness for paediatric palliative care has resulted in the impetus for paediatrician-led palliative care services across Malaysia. However, there is paucity of local data on patients receiving hospital-based paediatric palliative care. We aim to review the clinical spectrum of patients referred to these services. Methods: An observational study of children aged between 0-18 years receiving palliative care at 13 hospitals between 1st January and 31st December 2014 was carried out. Results: There were 315 patients analysed, 90 (28.6%) and 46 (14.6%) were neonates and adolescents respectively. The main ICD-10 diagnostic categories for all patients were identified to be 'Congenital malformations, deformations and chromosomal abnormalities' 117 (37.1%), 'Diseases of nervous system' 76 (24.1%) and 'Neoplasms' 60 (19.0%). At referral 156 (50%) patients had holistic needs assessments. Patients with 'Diseases of nervous system' were assessed to have significantly more physical needs than the other two diagnostic categories. Majority of patients who knew of their diagnosis and prognosis were those with malignancy. Over a fifth of referrals were at their terminal admission. Of 144 who died, 111 (77.1%) had advanced care plans. There was bereavement follow-up in 98 (68.1%) patients. Conclusion: Patients referred for palliative care have varied diagnoses and needs. To ensure all paediatricians are competent to deliver quality care to all children, further education and training initiatives is imperative. Copyright © 2017, Malaysian Medical Association. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://www.ncbi.nlm.nih.gov/pubmed/28255137" target="_blank" rel="noreferrer">28255137</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Abdul Manaf AM
Abdul Shukor INC
Acute Lymphoblastic Leukemia
Adolescent
Adult
Alias E
Bereavement
Caregiver
Cerebral Palsy
Chieng CH
Child
Child Care
Chong LA
Chromosome
Chromosome Aberration
Clinical Trial
Congenital Malformation
Controlled Clinical Trial
Controlled Study
Cross Sectional Study
Diagnosis
Duchenne Muscular Dystrophy
Education
Female
Follow Up
Hedra ZS
Hospital
Hospital Admission
Human
Icd-10
Infant
Khalid F
Khoo TB
Kuan GL
Major Clinical Study
malaysia
Male
Malignant Neoplasm
Medical Journal Of Malaysia
Multicenter Study
Needs Assessment
Newborn
Observational Study
Ong GB
Palliative Therapy
Patient Referral
Pediatrician
Prognosis
Razali H
Review
Spinal Muscular Atrophy
Teh SH
Wang JJ
-
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
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URL Address
<a href="http://doi.org/10.1016/j.ijporl.2014.06.027" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ijporl.2014.06.027</a>
Dublin Core
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Title
A name given to the resource
Comparison of treatment modalities in syndromic children with Obstructive Sleep Apnea-A randomized cohort study
Publisher
An entity responsible for making the resource available
International Journal of Pediatric Otorhinolaryngology
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
quality of life; major clinical study; priority journal; follow up; randomized controlled trial; mucopolysaccharidosis; outcome assessment; clinical effectiveness; human; article; child; female; male; controlled study; adenotonsillectomy; apnea hypopnea index; Continuous Positive Airway Pressure; CPAP device; Down syndrome; Epworth sleepiness scale; ess-c; Mucopolysaccharidoses; osa-18; Pediatric obstructive sleep apnea; positive end expiratory pressure; radiofrequency ablation device; sleep disordered breathing/su [Surgery]; sleep disordered breathing/th [Therapy]; treatment outcome; breathing difficulties; MPSI; MPSII; MPSIII; MPSIIIA; MPSIIIB; MPSVI; MPSVII; surgical interventions; physical interventions; adenotonsillectomy
Creator
An entity primarily responsible for making the resource
Sudarsan S S; Paramasivan V K; Arumugam S V; Murali S; Kameswaran M
Description
An account of the resource
Introduction: Obstructive Sleep Apnea (OSA) is a common medical problem in adults that is becoming increasingly recognized in children. It occurs in the pediatric age group, from newborns to teens. More recently, many specialists have estimated OSA prevalence to be between 5 and 6%. However, in syndromic children, the prevalence of OSA can be from 50 to 100%, having a significant effect on their Quality-of-Life. As they are a challenging population for management, it is essential to evaluate them thoroughly before planning appropriate intervention. Objective: To compare the efficacy of Adenotonsillectomy (T&A) and Continuous Positive Airway Pressure (CPAP) in syndromic children [Down syndrome (DS) and Mucopolysaccharidoses (MPS)] with Obstructive Sleep Apnea (OSA). Materials and methods: In a prospective, randomized, cohort comparative study, 124 syndromic children (DS and MPS) aged between 6 and 12 years were recruited from a private MPS support group and the Down Syndrome Society, Chennai. A standard assessment was performed on all children who entered the study including a full overnight Polysomnogram (PSG), Epworth Sleepiness Scale-Children (ESS-C) and Quality-of-Life (QOL) tool OSA-18. The children with positive PSG who consented for the study (n= 80) were randomly distributed to two groups, T&A group & CPAP group. The children were followed up with repeat PSG, clinical evaluation, ESS-C and Quality-of-Life (QOL) tool OSA-18 for a period of 1 year. Observation and results: Follow-up was available for 73 syndromic children. Both the groups, T&A group and CPAP group, showed statistically significant (p<. 0.05) improvement in Apnea-Hypoapnea Index (AHI), ESS-C, QOL from the intervention. In our study, T&A showed equal outcome compared to CPAP. The contrasting feature between the two groups was that CPAP use gave immediate sustained improvement while T&A gave gradual progressive improvement of symptoms over a period of 1 year. Conclusion: On average, T&A gives equal outcomes as CPAP and it can be suggested as a first-line treatment in this group of syndromic children. © 2014.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ijporl.2014.06.027" target="_blank" rel="noreferrer noopener">10.1016/j.ijporl.2014.06.027</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).
2014
adenotonsillectomy
apnea hypopnea index
Article
Arumugam S V
breathing difficulties
Child
Clinical Effectiveness
Continuous Positive Airway Pressure
Controlled Study
CPAP device
Down Syndrome
Epworth sleepiness scale
ess-c
Female
Follow Up
Human
International Journal of Pediatric Otorhinolaryngology
Kameswaran M
Major Clinical Study
Male
MPSI
MPSII
MPSIII
MPSIIIA
MPSIIIB
MPSVI
MPSVII
Mucopolysaccharidoses
Mucopolysaccharidosis
Murali S
osa-18
outcome assessment
Paramasivan V K
Pediatric obstructive sleep apnea
physical interventions
positive end expiratory pressure
Priority Journal
Quality Of Life
radiofrequency ablation device
Randomized Controlled Trial
sleep disordered breathing/su [Surgery]
sleep disordered breathing/th [Therapy]
Sudarsan S S
surgical interventions
Treatment Outcome
-
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
February 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2019 List
URL Address
<a href="http://doi.org/10.1111/jan.13811" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1111/jan.13811</a>
Dublin Core
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Title
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Conflicting realities experienced by children with life-limiting and life-threatening conditions when transitioning to adult health services
Publisher
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Journal of advanced nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
social support; qualitative analysis; palliative therapy; major clinical study; sibling; non profit organization; skill; joint; human; article; child; female; male; controlled study; adult; interview; total quality management; transition to adult care; learning; social media; adult child; secondary analysis; dilution; facilitation; social isolation
Creator
An entity primarily responsible for making the resource
Noyes J; Pritchard S; Pritchard A; Bennett V; Rees S
Description
An account of the resource
AIMS: The aim of this study was to report a secondary qualitative analysis exploring the cultural and practical differences that young people and parents experience when transitioning from children's to adult services. BACKGROUND: Despite two decades of research and quality improvement initiatives, young people with life-limiting and life-threatening conditions still find transition unsatisfactory. DESIGN: Secondary analysis: 77 qualitative interviews with children and young people (20), parents (35), siblings (1), professionals (21).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jan.13811" target="_blank" rel="noreferrer noopener">10.1111/jan.13811</a>
2018
Adult
Adult Child
Article
Bennett V
Child
Controlled Study
dilution
facilitation
February 2019 List
Female
Human
Interview
joint
Journal Of Advanced Nursing
Learning
Major Clinical Study
Male
Non Profit Organization
Noyes J
Palliative Therapy
Pritchard A
Pritchard S
Qualitative Analysis
Rees S
Secondary Analysis
Sibling
Skill
Social Isolation
social media
Social Support
Total Quality Management
Transition To Adult 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
July 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
July 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0276" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1089/jpm.2018.0276</a>
Dublin Core
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Title
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Costs of Care and Location of Death in Community-Based Pediatric Palliative Care
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
2019
Subject
The topic of the resource
adolescent; adult; article; cardiovascular disease/dm [Disease Management]; child; child death; child health care; child health insurance; childhood cancer/dm [Disease Management]; childhood disease/dm [Disease Management]; cohort analysis; community care; community-based; congenital disorder/dm [Disease Management]; cost; dying; family income; female; groups by age; health care cost; health maintenance organization; home care; human; major clinical study; male; medicaid; neuromuscular disease/dm [Disease Management]; newborn disease/dm [Disease Management]; palliative therapy; pediatric palliative care; pediatric patient; prematurity/dm [Disease Management]; race difference; retrospective study
Creator
An entity primarily responsible for making the resource
Chirico J; Donnelly J P; Gupton A; Cromwell P; Miller M; Dawson C; Korones D N
Description
An account of the resource
Background: Children with complex chronic conditions (CCCs) are dying at home with increased frequency, yet the number of studies on the financial feasibility of community-based pediatric palliative care is limited. Objective(s): The objectives of this study were to (1) describe characteristics of patients who died in a community-based palliative care program and (2) evaluate cost differences associated with participant characteristics and location of death. Design(s): A retrospective cohort analysis of administrative and electronic medical record data was employed. Setting/Subjects: Children enrolled in the community-based pediatric palliative care program, CompassionNet, who died between 2008 and 2015 were included (N = 224). Measurements: Demographic data, program expense, and paid claims were extracted from an insurance provider database and clinical data from the electronic medical record. Result(s): Sixty-six (29%) of the children were \textless1 year old at death; 80 (36%) were 1-9 years old, and 78 (35%) were 10-22 years old. Malignancy was the most common primary CCC diagnosis for the 158 children/adolescents (n = 89, 56%), whereas neuromuscular conditions (n = 20, 30%) were most frequent for infants. Death at home occurred 21% of the time for infants, 48% for children of ages 1-9 years, and 46% for children of ages 10-22 years. The mean total cost in the final year of life for pediatric patients was significantly related to location of death, a malignancy diagnosis, and participation in Medicaid. The largest estimated difference was between costs of care associated with death at home ($121,111) versus death in the hospital ($200,050). Conclusion(s): Multidisciplinary community-based pediatric palliative care teams provide the opportunity for a home death to be realized as desired. Significant cost differences associated with location of death may support program replication and sustainability. Copyright © 2019, Mary Ann Liebert, Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2018.0276" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0276</a>
2019
Adolescent
Adult
Article
cardiovascular disease/dm [Disease Management]
Child
Child Death
Child Health Care
child health insurance
childhood cancer/dm [Disease Management]
childhood disease/dm [Disease Management]
Chirico J
Cohort Analysis
community care
community-based
congenital disorder/dm [Disease Management]
Cost
Cromwell P
Dawson C
Donnelly J P
Dying
family income
Female
groups by age
Gupton A
Health Care Cost
health maintenance organization
Home Care
Human
Journal of Palliative Medicine
July 2019 List
Korones D N
Major Clinical Study
Male
Medicaid
Miller M
neuromuscular disease/dm [Disease Management]
newborn disease/dm [Disease Management]
Palliative Therapy
Pediatric Palliative Care
pediatric patient
Prematurity/dm [disease Management]
Race Difference
Retrospective Study
-
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
May 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
May List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2022-325157" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2022-325157</a>
Dublin Core
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Title
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Data-driven approach to understanding neonatal palliative care needs in England and Wales: a population-based study 2015-2020
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
England; neonatology; palliative therapy; Wales; article; England; female; human; infant; Infant Newborn; long term survival; major clinical study; male; morbidity; newborn; newborn care; Palliative Care; perinatal care; Wales
Creator
An entity primarily responsible for making the resource
Harnden F; Lanoue J; Modi N; Uthaya SN; Battersby C
Description
An account of the resource
Abstract Objective To quantify admissions to neonatal units in England and Wales with potential need for palliative care. Design, setting and patients Diagnoses and clinical attributes indicating a high likelihood of requiring palliative care were mapped to categories within the British Association of Perinatal Medicine’s (BAPM) framework on palliative care. We extracted data from the National Neonatal Research Database on all babies born and admitted to neonatal units in England and Wales 2015–2020. Outcomes The number and proportion of babies meeting BAPM categories, their discharge outcomes and the characteristics of babies who died during neonatal care but did not fulfil any BAPM category. Results 12 123/574 954 (2.1%) babies met one or more BAPM category: 6239/12 123 (51%) conformed to BAPM category 4 (postnatal conditions with high risk of severe impairment), 3796 (31%) to category 2 (antenatal/postnatal diagnosis with high risk of significant morbidity or death), 1399 (12%) to category 3 (born at margin of viability) and 288 (2%) to category 1 (antenatal/postnatal diagnosis not compatible with long-term survival); 401 babies (3%) met criteria for multiple categories. 6814/12 123 (56%) were discharged home, 2385 (20%) were discharged to other settings and 2914 (24%) died before neonatal discharge. 3000/5914 (51%) babies who died during neonatal care did not conform to any BAPM category. Of these, 2630/3000 (88%) were born preterm. Conclusions At least 2% of babies admitted to neonatal units had palliative care needs according to existing BAPM categories; most survived to discharge. Of deaths, 51% were not captured by the BAPM categories; most were extremely preterm.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2022-325157" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2022-325157</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
Archives of Disease in Childhood
Article
Battersby C
England
Female
Harnden F
Human
Infant
Infant Newborn
Lanoue J
long term survival
Major Clinical Study
Male
May List 2023
Modi N
Morbidity
Neonatology
Newborn
Newborn Care
Palliative Care
Palliative Therapy
Perinatal Care
Uthaya SN
Wales
-
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/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27713</a>
Dublin Core
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Title
A name given to the resource
Defining palliative opportunities in pediatric patients with bone and soft tissue tumors
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
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; bone marrow; bone tumor; cancer patient; cancer recurrence; child; conference abstract; controlled study; death; disease exacerbation; do not resuscitate order; female; hospice; hospital admission; human; intensive care; major clinical study; male; palliative therapy; pediatric patient; phase 1 clinical trial; relapse; retrospective study; soft tissue tumor; solid malignant neoplasm; statistics
Creator
An entity primarily responsible for making the resource
Ebelhar J; Allen K; Wasilewski-Masker K; Brock K
Description
An account of the resource
Background: Pediatric patients with cancer have many opportunities for increased primary or specialty palliative care (PC). This is particularly true for patients with solid tumors who often have higher symptom burden and worse outcomes. However, how many opportunities, when they occur, and if these opportunities are correlated with disease or demographic variables are unknown. Objective(s): To define palliative opportunities within pediatric cancer, and explore howthese occur in patients with solid tumors. Design/Method: A priori, nine palliative opportunity categories were defined (disease progression and relapse, hospital admission for symptoms or social concerns, intensive care or marrow transplant admission, phase 1 trial or hospice enrollment, DNR status). A single-center retrospective review was conducted on patients aged 0-17 years at diagnosis with bone/soft tissue tumors who died from 1/1/12- 11/30/17. Demographic, disease, and treatment data was collected, and descriptive statistics were performed. Timing of opportunities was evaluated over quartiles from diagnosis to death. Result(s): Patients (n = 60) had a mean of nine (SD = 4) palliative opportunities. Number or type of opportunities did not differ by primary diagnosis or demographic variables. PC consulted on 18 patients (30%) a median of 14.0 months (IQR 25.0) after diagnosis, and 2.6 months (IQR 11.5) prior to death. Likelihood of PC consult did not differ by diagnosis or total opportunities. The opportunities that preceded PC consultwere progression/relapse (9/18), escalated hospital level of care (4/18), symptom admission (3/18), and end-oflife concerns (2/18). Hospicewas involved for 72% of patients. The majority of opportunities occurred in the last quartile of the disease course (median 5.0, IQR 5.0). Conclusion(s): Patients with solid tumors incur many events warranting psychosocial or palliative support, which increase toward the end-of-life. Mean reported opportunities is likely a minimum due to stringent collection methods. No palliative opportunity or demographic variable was associated with PC consultation. Defining palliative opportunities provides an additional framework to assess the disease trajectory for patients suffering from oncologic diseases. Additional work is needed to further refine what qualifies as a palliative opportunity, how to fully capture opportunities, and how those may differ across different cancers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</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).
2019
Adolescent
Allen K
bone marrow
bone tumor
Brock K
Cancer Patient
Cancer Recurrence
Child
conference abstract
Controlled Study
Death
disease exacerbation
do not resuscitate order
Ebelhar J
Female
Hospice
Hospital Admission
Human
Intensive Care
Major Clinical Study
Male
Oncology 2019 List
Palliative Therapy
Pediatric Blood and Cancer
pediatric patient
phase 1 clinical trial
relapse
Retrospective Study
soft tissue tumor
solid malignant neoplasm
Statistics
Wasilewski-Masker K
-
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 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 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.11.022" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.11.022</a>
Dublin Core
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Title
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Defining the Boundaries of Palliative Care in Pediatric Oncology
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
2020
Subject
The topic of the resource
child; human; palliative therapy; controlled study; female; major clinical study; male; article; childhood cancer; terminal care; quality of life; interview; comfort; cancer patient; content analysis; skill; mental health; nurse practitioner; genetic transcription; pediatric oncologist; standardization
Creator
An entity primarily responsible for making the resource
Cuviello A; Raisanen J C; Donohue P K; Wiener L; Boss R D
Description
An account of the resource
Context: Although palliative care (PC) continues to be integrated into pediatric oncological care, only a minority of patients with cancer receive a formal PC consult.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.11.022" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.11.022</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
Article
Boss R D
Cancer Patient
Child
Childhood Cancer
Comfort
Content Analysis
Controlled Study
Cuviello A
Donohue P K
Female
genetic transcription
Human
Interview
Journal of Pain and Symptom Management
Major Clinical Study
Male
Mental Health
Nurse Practitioner
Oncology 2020 List
Palliative Therapy
pediatric oncologist
Quality Of Life
Raisanen J C
Skill
standardization
Terminal Care
Wiener L
-
Dublin Core
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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>
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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Development and delivery of a one-stop multidisciplinary clinic to provide comprehensive palliative and supportive care for children 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
pain; social support; caregiver; terminal care; education; major clinical study; psychologist; outpatient; cancer patient; hospital patient; holistic care; malignant neoplasm; antibiotic agent; conference abstract; financial management; physiotherapist; human; child; female; male; palliative therapy; drug therapy; multidisciplinary team; doctor nurse relation; ambulatory care; dietitian; nutritional counseling; patient coding; physiotherapy; wound
Creator
An entity primarily responsible for making the resource
Anis H; Taluja A; Chuki T; Crack L; Arora R; Bagai P
Description
An account of the resource
Background/Objectives: To address a service gap at the primary treating Center arising from patient overload and on holidays/weekends, Cankids Pediatric Palliative Care Center in Delhi was providing children with cancer inpatient admissions and ambulatory care IV antibiotics. Other Cankids Social Support services were generally not being offered. Objective of this service was to run a One-stop Social Support Clinic providing holistic care and strengthening Palliative Care Outpatient and Inpatient Services. Design/Methods: Pilot phase of the Clinic (Mar-Sep 2017) supplemented the ambulatory care service with additional access to Pain, Symptom, Wound Management, Psychological and Nutritional Counselling, Physiotherapy, Educational, Financial Support and Patient Navigation along with care giver education by trained professional team. The Clinic operated seven days a week, with 68 clinics, providing 11 services. Providers were trained for Patient Navigation and referrals, Standard Operational Procedures and Patient data management. Results: Total 1,204 patients received 7,101 episodes of care. 195(16%) patients received Palliation of symptoms. Indication for inpatient admissions in 8 out of 64 were for end of life care. 23(62%) of 37 new inpatient admissions were from the Clinic. 261 (57%) of 456 patients who came for IV Ambulatory Care received other social support services including Pain, Symptom Management, Psychological, Nutritional, Hematological Support, Physiotherapy, Medical assistance and Investigations and Educational Scholarships. 25 Patient Care Training Sessions were attended by 347 caregivers. 62.6% participants were extremely satisfied and 37.6% satisfied with the services provided. Conclusions: A well run Social Support One-stop Clinic together with a Multi Disciplinary Team including Palliative Care Physicians, Nurses, Psychologists, Nutritionists,Physiotherapists and Patient Navigators at the Pediatric Palliative Care Center provides enhanced holistic care and a better understanding and acceptance of palliative care. It also provides a platform and the time for parent education on how to care for their child during treatment at home and in the hospital setting.
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
Ambulatory Care
Anis H
antibiotic agent
Arora R
Bagai P
Cancer Patient
Caregiver
Child
Chuki T
conference abstract
Crack L
dietitian
doctor nurse relation
Drug Therapy
Education
Female
financial management
Holistic Care
Hospital Patient
Human
Major Clinical Study
Male
Malignant Neoplasm
Multidisciplinary team
nutritional counseling
Oncology 2018 List
Outpatient
Pain
Palliative Therapy
patient coding
Pediatric Blood and Cancer
physiotherapist
Physiotherapy
Psychologist
Social Support
Taluja A
Terminal Care
wound
-
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
March 2020 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
March 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/442">https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/442</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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Development of an innovative program to improve provision of palliative and hospice care to children and families in the community: The story of QoLA Kids
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
cancer patient; cancer prognosis; catchment; child; childhood cancer; conference abstract; controlled study; counselor; distress syndrome; female; Hospice Care; hospital personnel; human; magnet; major clinical study; male; nurse practitioner; outpatient; palliative therapy; patient referral; pediatric hospital; pediatric patient; prognosis; program impact; quality of life; registered nurse; social worker
Creator
An entity primarily responsible for making the resource
Kiefer A C; Kaye E C; Blazin L J; Baker J N
Description
An account of the resource
Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their families; however, hospice services only reach about 10% of eligible children who die in the United States, with the majority of pediatric patients receiving care through adult hospice organizations. Program Design: The Quality of Life for All (QoLA) Kids program, established in August 2012, is an outpatient, community-based pediatric palliative care and hospice program that strives to enhance quality of life for pediatric patients and families, provide care coordination across multiple settings, mitigate physical, psychosocial, and spiritual distress, ensure a comfortable and peaceful death in the patient's preferred setting, and support bereaved family members and hospital staff. The program represents a partnership between two MAGNET-certified pediatric hospitals and a local home health and hospice agency. QoLA Kids comprises an extensive interdisciplinary team including physicians, nurse practitioners, registered nurses, medical social workers, spiritual counselors, child life specialists, and administrative support staff. Patients are enrolled on either the palliative care or hospice arm of the program, with flexibility to transition easily between arms as clinical status and goals of care evolve. Eligibility for the hospice arm necessitates an expected prognosis of 6 months or less left to live. Program Impact: Since programmatic inception nearly 6 years ago, QoLA Kids has served a total of 330 children and families in the local catchment area. Approximately 41% of patients (n=135) were enrolled on the palliative arm, with the remaining 59% enrolled on hospice (n=195). Between 2012-2017, the mean number of days from enrollment to death was 142 days for patients on the hospice arm (n=76) and 288 for patients on the palliative care arm (n=5). The percentage of patients with malignancies who received palliative care prior to death increased from 71% to 97% within 2 years following program implementation. Conclusions/Future Directions: QoLA Kids is an innovative program that facilitates the provision of palliative care and hospice services and resources to children with serious illness and their families in the community. Through this program, children and families have been able to access palliative care services in their community well before the end of life. After program initiation, an increase in the number of palliative care consults was also seen within the pediatric oncology patient population suggesting that the program may provide an incentive for referral to palliative care. Further investigation is needed to identify optimal metrics for ascertaining the physical and psychosocial benefits from this innovative program.
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).
2019
Baker J N
Blazin L J
Cancer Patient
Cancer Prognosis
catchment
Child
Childhood Cancer
conference abstract
Controlled Study
Counselor
Distress Syndrome
Female
Hospice Care
hospital personnel
Human
Kaye E C
Kiefer A C
magnet
Major Clinical Study
Male
March 2020 List
Nurse Practitioner
Outpatient
Palliative Therapy
Patient Referral
Pediatric Hospital
pediatric patient
Pediatrics
Prognosis
program impact
Quality Of Life
registered nurse
Social Worker
-
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
September 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
September 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2019.0111" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0111</a>
Dublin Core
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Title
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Differences in Advance Care Planning and Circumstances of Death for Pediatric Patients Who Do and Do Not Receive Palliative Care Consults: A Single-Center Retrospective Review of All Pediatric Deaths from 2012 to 2016
Publisher
An entity responsible for making the resource available
Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; child; female; human; major clinical study; male; controlled study; hospice; medical record review; do not resuscitate order; palliative therapy; advance care planning; life sustaining treatment; pediatric patient; physician; retrospective study; time of death; statistics; tertiary care center
Creator
An entity primarily responsible for making the resource
Harmoney K; Mobley EM; Gilbertson-White S; Brogden NK; Benson RJ
Description
An account of the resource
Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning (ACP) and circumstances of death in pediatric populations with a wide range of diagnoses. Objective: To determine the relationship between PPC involvement, ACP, and circumstances of death for pediatric patients. Design: A retrospective chart review of 558 pediatric patients who died between January 1, 2012 and December 31, 2016 was conducted. Descriptive statistics were used to characterize the sample. A multivariable logistic regression was used to obtain associations between PPC involvement and ACP. Setting: Large, multidisciplinary tertiary care center in a rural state. Measurements: Data abstracted for each patient included the following: demographic information, diagnosis, location of primary unit, hospice involvement, goals of care (GOC), code status, Physician Orders for Life-Sustaining Treatment (POLST) completion, and location of death. Results: Patients with PPC involvement were more likely to have had ACP addressed before death. After adjusting for covariates in the model, patients with PPC were more likely to have their GOC documented (odds ratio [OR] = 96.93), completion of POLST (OR = 24.06), do-not-resuscitate code status (OR = 7.71), and hospice involvement at the time of death (OR = 11.70) compared with those who did not receive PPC. Conclusions: Pediatric patients are more likely to have ACP addressed if they have PPC involvement. Patients with chronic complex conditions are most likely to receive palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2019.0111" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0111</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).
2019
Advance Care Planning
Article
Benson RJ
Brogden NK
Child
Controlled Study
do not resuscitate order
Female
Gilbertson-White S
Harmoney K
Hospice
Human
Journal of Palliative Medicine
Life Sustaining Treatment
Major Clinical Study
Male
Medical Record Review
Mobley EM
Palliative Therapy
pediatric patient
Physician
Retrospective Study
September 2019 List
Statistics
tertiary care center
time of death
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Oncology
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/10.1542/peds.2017-0671" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2017-0671</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
Disparities in the intensity of end-of-life care for children with cancer
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Childhood Cancer; Health Care Disparity; Terminal Care; Adolescent; Adult; Article; Cancer Chemotherapy; Caucasian; Child; Childhood Mortality; Cohort Analysis; Controlled Study; Demography; Female; Hematologic Malignancy; Hemodialysis; Hospital Admission; Hospital Mortality; Human; Infant; Intensive Care Unit; Intubation; Major Clinical Study; Male; Newborn; Population Research; Priority Journal; Resuscitation; Retrospective Study
Creator
An entity primarily responsible for making the resource
Johnston EE; Alvarez E; Saynina O; Sanders L; Bhatia S; Chamberlain LJ
Description
An account of the resource
BACKGROUND: Many adult patients with cancer who know they are dying choose less intense care; additionally, high-intensity care is associated with worse caregiver outcomes. Little is known about intensity of end-of-life care in children with cancer. METHODS: By using the California Office of Statewide Health Planning and Development administrative database, we performed a population-based analysis of patients with cancer aged 0 to 21 who died between 2000 and 2011. Rates of and sociodemographic and clinical factors associated with previously-defined end-of-life intensity indicators were determined. The intensity indicators included an intense medical intervention (cardiopulmonary resuscitation, intubation, ICU admission, or hemodialysis) within 30 days of death, intravenous chemotherapy within 14 days of death, and hospital death. RESULTS: The 3732 patients were 34% non-Hispanic white, and 41% had hematologic malignancies. The most prevalent intensity indicators were hospital death (63%) and ICU admission (20%). Sixty-five percent had >=1 intensity indicator, 23% >=2, and 22% >=1 intense medical intervention. There was a bimodal association between age and intensity: Ages <5 years and 15 to 21 years was associated with intense care. Patients with hematologic malignancies were more likely to have high-intensity end-of-life care, as were patients from underrepresented minorities, those who lived closer to the hospital, those who received care at a nonspecialty center (neither Children's Oncology Group nor National Cancer Institute Designated Cancer Center), and those receiving care after 2008. CONCLUSIONS: Nearly two-thirds of children who died of cancer experienced intense end-of-life care. Further research needs to determine if these rates and disparities are consistent with patient and/or family goals.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2017-0671" target="_blank" rel="noreferrer">10.1542/peds.2017-0671</a>10.1542/peds.2017-0671
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
Alvarez E
Article
Bhatia S
Cancer Chemotherapy
Caucasian
Chamberlain LJ
Child
Childhood Cancer
Childhood Mortality
Cohort Analysis
Controlled Study
Demography
Female
Health Care Disparity
Hematologic Malignancy
Hemodialysis
Hospital Admission
Hospital Mortality
Human
Infant
Intensive Care Unit
Intubation
Johnston EE
Major Clinical Study
Male
Newborn
Oncology 2017 List
Pediatrics
Population Research
Priority Journal
Resuscitation
Retrospective Study
Sanders L
Saynina O
Terminal Care