1
40
45
-
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Title
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April 2024 List
Text
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April List 2024
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<a href="http://doi.org/10.1016/j.jpeds.2024.113930" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpeds.2024.113930</a>
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Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment
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Journal of Pediatrics
Date
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2024
Subject
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Child; child; adult; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; chronic disease; Socioeconomic Factors; gestational age; Referral and Consultation; ethnicity; Only Child; patient referral; tertiary care center; morbidity; mortality; neurologic examination; multidisciplinary team; Hispanic; medicaid; racism; primary medical care; special situation for pharmacovigilance; racial disparity; economic inequality
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Jones MN; Simpson SL; Beck AF; Cortezzo DE; Thienprayoon R; Corley AMS; Thomson J
Description
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Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality. Study design: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. Results: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. Conclusions: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care.
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<a href="http://doi.org/10.1016/j.jpeds.2024.113930" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2024.113930</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).
2024
Adult
April List 2024
Article
Beck AF
Child
Chronic Disease
Cohort Analysis
Controlled Study
Corley AMS
Cortezzo DE
economic inequality
Ethnicity
Female
Gestational Age
Hispanic
Human
Jones MN
Journal of Pediatrics
Major Clinical Study
Male
Medicaid
Morbidity
Mortality
Multidisciplinary team
Neurologic Examination
Only Child
Patient Referral
primary medical care
racial disparity
racism
Referral And Consultation
Retrospective Study
Simpson SL
Socioeconomic Factors
special situation for pharmacovigilance
tertiary care center
Thienprayoon R
Thomson J
-
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March 2024 List
Text
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March List 2024
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<a href="http://doi.org/10.1097/SPC.0000000000000686" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/SPC.0000000000000686</a>
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Thirty-day mortality as a metric for palliative radiotherapy in pediatric patients
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Current Opinion in Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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mortality; palliative therapy; pediatric patient; adult; article; biological marker; child; female; human; male; Metronidazole; patient care; patient referral; quality of life; radiotherapy; Radiotherapy; terminally ill patient
Creator
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Keit E; Nanda R; Johnstone PAS
Description
An account of the resource
Purpose of review: Thirty-day mortality (30DM) is an emerging consideration for determining whether terminally ill adult patients may benefit from palliative radiotherapy (RT). However, the efficacy and ethics of delivering palliative RT at the end of life (EOL) in children are seldom discussed and not well-established. Recent findings: Palliative RT is perhaps underutilized among patients ≤21 years old with rates as low as 11%. While effective when delivered early, clinical benefit decreases when administered within the last 30 days of life. Pediatric 30DM rates vary widely between institutions (0.7-30%), highlighting the need for standardized practices. Accurate prognosis estimation remains challenging and prognostic models specific to palliative pediatric patients are limited. Discordance between provider and patient/parent perceptions of prognosis further complicates decision-making. Summary: RT offers effective symptom control in pediatric patients when administered early. However, delivering RT within the last 30 days of life may provide limited clinical benefit and hinder optimal EOL planning and care. Early referral for palliative RT, preferably with fewer fractions (five or fewer), along with multidisciplinary supportive care, optimizes the likelihood of maintaining patients' quality of life. Prognosis estimation remains difficult, and improving patient and family understanding is crucial. Further research is needed to refine prognostic models and enhance patient-centered care.
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<a href="http://doi.org/10.1097/SPC.0000000000000686" target="_blank" rel="noreferrer noopener">10.1097/SPC.0000000000000686</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
Adult
Article
biological marker
Child
Current Opinion in Supportive and Palliative Care
Female
Human
Johnstone PAS
Keit E
Male
March List 2024
Metronidazole
Mortality
Nanda R
Palliative Therapy
Patient Care
Patient Referral
pediatric patient
Quality Of Life
Radiotherapy
terminally Ill Patient
-
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Title
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February 2024 List
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February List 2024
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<a href="http://doi.org/10.2174/0118715303278702231019093844" target="_blank" rel="noreferrer noopener"> http://doi.org/10.2174/0118715303278702231019093844</a>
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Title
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Palliative Care in Children with Inherited Metabolic Diseases: Why does it matter?
Publisher
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Endocrine, Metabolic and Immune Disorders - Drug Targets
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; article; cohort analysis; female; hospital admission; human; male; retrospective study; palliative therapy; intensive care; hospitalization; follow up; medical device; school child; home care; enteric feeding; patient referral; neurologic disease; noninvasive ventilation; communication disorder; motor dysfunction; drug combination; metabolic disorder; emergency ward; symptom assessment; place of death; bereavement support; emotional support; respiratory equipment
Creator
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Pereira MJ; Nogueira A; Grilo E; Ferreira S; Diogo L; Cancelinha C
Description
An account of the resource
Background: Inherited metabolic diseases (IMD) bring considerable burden on the child and family. Challenging areas for health care include the identification of distressing symptoms, prognostic uncertainty, and bereavement. Literature regarding the impact of paediatric palliative care (PPC) is scarce. Objective: This study aims to evaluate children with IMD referred to a PPC team (PPCT) and to analyse its impact on home care, decision to limit treatment (DLT), use of hospital resources (emergency department admissions - EDA, hospital admissions - HA, intensive care admissions - ICA) and end of life support. Methods: Retrospective cohort study of children with IMD referred to a specialized PPCT (2016-2022). We assessed clinical data: symptoms control, time of referral and length of the follow-up period, DLT, device dependency, use of hospital resources prior to and after referral, place of death and end-of-life support. Results: Fifteen children with IMD were referred to PPCT (8% of total referrals), with median age of 7 years (4 months - 17 years); 53% female. All children were non or pre-verbal. Most prevalent symptoms were neurologic and motor impairment (100%), respiratory and gastrointestinal (75%). 80% had tube feeding, 90% had some respiratory device (non-invasive ventilation in 23%). All children had multidrug use, with a mean of 6 drugs per child (2-9). 73% had home PPC and 80% had DLT planned. Nine children died (78% in hospital), after a mean of 17 months of follow-up (2 months to 4 years), all with DLT planned. 67% had support from PPCT at the end of life. All these families received emotional support. Decrease in EDA (10 vs 2) was noticed before and after PPCT. No impact was seen in HA and ICA (6 vs 5 and 1 vs 1, respectively) and there was a longer mean of hospitalisation stay (15 vs 32 days). Conclusion: Our cohort includes a group of children with severe, complex and neurodegenerative IMD. They need multiple medications for symptoms control, are highly dependent on medical devices and consume significant healthcare resources. Communication impairment adds complexity being a major barrier to symptom assessment. PPCT referral allowed home support, anticipated care plans development with end of life and bereavement support, as well as a tendency towards a reduction in EDA. These findings reinforce the need for holistic approach to identify and address the PPC needs of children with IMD.
Identifier
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<a href="http://doi.org/10.2174/0118715303278702231019093844" target="_blank" rel="noreferrer noopener">10.2174/0118715303278702231019093844</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
Article
Bereavement Support
Cancelinha C
Child
Cohort Analysis
communication disorder
Diogo L
drug combination
Emergency Ward
emotional support
Endocrine, Metabolic and Immune Disorders - Drug Targets
enteric feeding
February List 2024
Female
Ferreira S
Follow Up
Grilo E
Home Care
Hospital Admission
Hospitalization
Human
Intensive Care
Male
medical device
Metabolic Disorder
motor dysfunction
Neurologic Disease
Nogueira A
Noninvasive Ventilation
Palliative Therapy
Patient Referral
Pereira MJ
Place Of Death
respiratory equipment
Retrospective Study
School Child
Symptom Assessment
-
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Title
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February 2024 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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February List 2024
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.10.015" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.10.015</a>
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Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria: Improving Prenatal Palliative Care Consultation through Quality Improvement
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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
2023
Subject
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child; diagnosis; article; controlled study; female; human; palliative therapy; consultation; outcome assessment; congenital malformation; patient referral; eligibility; pregnancy; total quality management
Creator
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Lin M; Rholl E; Andescavage N; Ackerman O; Fisher D; Lanzel AF; Mahmood LA
Description
An account of the resource
Three percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal PPC consultation using a diagnostic trigger list. Measures: Main outcome measure was the percentage of prenatal PPC consults completed based on diagnostic trigger list eligibility. Balancing measures included stakeholder perspectives on PPC consults and products. Intervention: Interventions included creation and implementation of a diagnostic trigger list for prenatal PPC consultation, educational initiatives with stakeholders, and iterative modifications of our prenatal consultation process. Outcomes: Interventions increased consultation rates ≥80% during the first six months of QI implementation (baseline vs. post-interventions) although this increase was not consistently sustained over a 12-month period. Conclusions/lessons learned: Diagnostic trigger lists improve initial rates of prenatal PPC consultation and additional interventions are likely needed to sustain this increase.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.10.015" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.10.015</a>
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2023
Ackerman O
Andescavage N
Article
Child
Congenital Malformation
Consultation
Controlled Study
Diagnosis
eligibility
February List 2024
Female
Fisher D
Human
Journal of Pain and Symptom Management
Lanzel AF
Lin M
Mahmood LA
outcome assessment
Palliative Therapy
Patient Referral
Pregnancy
Rholl E
Total Quality Management
-
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Title
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November 2023 List
Text
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November List 2023
URL Address
<a href="http://doi.org/10.2174/1871530323666230914114425" target="_blank" rel="noreferrer noopener"> http://doi.org/10.2174/1871530323666230914114425</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Paediatric Palliative Care in a Reference Centre of Inherited Metabolic Diseases
Publisher
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Endocrine, Metabolic and Immune Disorders - Drug Targets
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; article; cohort analysis; female; hospital admission; human; major clinical study; male; quality of life; outpatient; palliative therapy; Metabolic Diseases; school child; patient referral; noninvasive ventilation; surgery; daily life activity; gastrostomy; metabolic disorder; pediatric patient; home visit; neurologic disease; demography; disorders of mitochondrial functions; disorders of peroxisomal functions; lysosome; peroxisome; systemic disease
Creator
An entity primarily responsible for making the resource
Saraiva BM; Santos S; Ferreira AC; Paiva M
Description
An account of the resource
INTRODUCTION: Paediatric palliative care (PPC) has a significant role in improving the quality of life of children with life-limiting or life-threatening illnesses, diminishing symptom burden, and providing holistic support to patients and families. Inherited metabolic diseases (IMD) are a group of heterogeneous diseases that often present with severe neurologic impairment, needing lifelong care and challenging symptom management. OBJECTIVE(S): Our aim was to characterize the cohort of patients with IMD followed by the paediatric palliative care team (PPCT) and to describe the provision of care provided. METHOD(S): The descriptive analysis of demographic, clinical, and care delivery data of a cohort of paediatric patients was carried out with a confirmed diagnosis of IMD, followed in a Reference Centre, in the care of PPCT between 2018 and 2023. RESULT(S): Thirteen (10%) of a total of 134 patients in the care of PPCT had a confirmed diagnosis of an IMD: 6 mitochondrial, 3 peroxisomal, 3 lysosomal, and 1 pterin metabolism disorder. The median age at referral was 9 years (0-18), the median duration of care was 2 years [2-4], median number of home visits in the last year was 2 [1-4], and median number of outpatient consults was 4 [2 -8]. Twelve patients (92%) had no autonomy in their activities of daily living. Neurologic (100%), gastrointestinal (92%), and respiratory (69%) symptoms were the main focus of care. All patients were polymedicated (5 or more different drugs). Nine (69%) had percutaneous gastrostomy and 2 (15%) had noninvasive ventilation. Median hospital admissions before and after starting care by PPCT were 4 and 1. Moreover, three patients died and one was at home. CONCLUSION(S): Mitochondrial, lysosomal, and peroxisomal disorders are complex multisystemic diseases that very often have no treatment intended to cure. These patients have a heavy symptom burden and frequent intercurrences. Addressing these symptoms is challenging, but PPC has proven to reduce hospital admissions with consequent improvement in quality of life. In the future, PPC should be available for all children and families with life-threatening conditions.Copyright© Bentham Science Publishers; For any queries, please email at epub@benthamscience.net.
Identifier
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<a href="http://doi.org/10.2174/1871530323666230914114425" target="_blank" rel="noreferrer noopener">10.2174/1871530323666230914114425</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
Article
Child
Cohort Analysis
daily life activity
Demography
disorders of mitochondrial functions
disorders of peroxisomal functions
Endocrine, metabolic & immune disorders drug targets
Female
Ferreira AC
Gastrostomy
Home Visit
Hospital Admission
Human
lysosome
Major Clinical Study
Male
Metabolic Diseases
Metabolic Disorder
Neurologic Disease
Noninvasive Ventilation
November List 2028
Outpatient
Paiva M
Palliative Care
Palliative Therapy
Patient Referral
pediatric patient
peroxisome
Quality Of Life
Santos S
Saraiva BM
School Child
Surgery
systemic disease
-
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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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.50</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
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
Palliative Care; child; controlled study; female; human; male; retrospective study; quality of life; palliative therapy; hospice; practice guideline; follow up; outcome assessment; artificial ventilation; clinical article; patient referral; education; consultation; pediatric intensive care unit; awareness; diagnosis; life sustaining treatment; hospital discharge; adolescent; surgery; infant; demographics; conference abstract; e-mail; decision making; trust; length of stay; nurse; writing; community care; heart graft; nursing staff; clinical nurse specialist; apparent life threatening event; organizational restructuring; oxygenation
Creator
An entity primarily responsible for making the resource
Subhash S; Freitas D; Aidoo E; Nkulu G; Chan-Dominy A
Description
An account of the resource
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus wishes of the child and family on preferred place of care.2 3 We evaluated the temporal effect on PC referrals at a quarternary cardiorespiratory paediatric intensive care unit (PICU) following organisational restructuring to integrate people-centred changes amidst complex diagnoses and advanced life-sustaining treatments. Methods Retrospective review of PC referral database between January and December 2022 was conducted, analysed on referral pathway, reviewed with decision-making process, patient demographics and outcome. Results The nurse-led service with ad hoc informal visits to offer PC support following requests from medical team was reorganised since service-level agreement for paediatric PC consultant attendance at our weekly complex care multidisciplinary meetings. Departmental education sessions and trust governance events were platforms to promote staff awareness on service and enhance referral pathway. PC referrals were made for 23 children(M:F 1.3:1), median age 13.8 months (range 10days -16.8years), under categories of life-limiting diagnoses (n=12, 52%) or acute life-threatening events (n=11, 48%), including resuscitative extracorporealmembrane-oxygenation.(Graph 1) Median time from admission to PC referral was 59 days (range 6-162) prior to standardised referral proforma in May2022, this reduced to 36 days (range -35 to 68) and 6 days (range 3-30) per 4-month period. One referral was made 5 weeks prior to an international repatriation for child with life-limiting diagnosis on long-term ventilation. Completed referral forms sent to a designated email address were passed onto PC consultants and clinical nurse specialist. Dedicated weekly PC days provided introductory 'meet-andgreet', follow-up 'check-in' or semi-structured meeting with PC team members for patients, families and staff. PC-led multidisciplinary meetings (including 2 online) were followed by real-time correspondence to medical and nursing staff with feedback, recommendations and action plan. 4 advanced care plans and 3 symptom management plans were completed; 9 hospice and 5 community care nursing team referrals were made whilst 2 families declined hospice. Median hospital length of stay was 69 days (range 6-390). 5 children survived to hospital discharge (3 died at home), and 8 are still in hospital (1 as heart transplant recipient). Conclusion Integrative culture during reorganisation can positively influence paediatric PC referrals. Event-triggered and diagnosis-based cues may help foster PC participation as continuing strategy to respond with support during disease, treatment and psychosocial burden for children and families.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.50</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
Adolescent
Aidoo E
apparent life threatening event
Archives of Disease in Childhood
Artificial Ventilation
Awareness
Chan-Dominy A
Child
Clinical Article
Clinical Nurse Specialist
community care
conference abstract
Consultation
Controlled Study
Decision Making
Demographics
Diagnosis
E-mail
Education
Female
Follow Up
Freitas D
heart graft
Hospice
hospital discharge
Human
Infant
Length Of Stay
Life Sustaining Treatment
Male
Nkulu G
Nurse
Nursing Staff
October List 2031
organizational restructuring
outcome assessment
Oxygenation
Palliative Care
Palliative Therapy
Patient Referral
Pediatric Intensive Care Unit
Practice Guideline
Quality Of Life
Retrospective Study
Subhash S
Surgery
Trust
writing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.52" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.52</a>
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Title
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An Audit Analysing The Standard Of Patient Care And Service Provision In Sppc At A Tertiary Hospital And Hospice
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
2023
Subject
The topic of the resource
child; female; human; male; palliative therapy; clinical article; Hospices; patient referral; conference abstract; place of death; hospice care; patient coding; staff training; tertiary care center; sample size; manager; patient care
Creator
An entity primarily responsible for making the resource
Durrant E; Warlow T; Coulson-Smith P; Renton K
Description
An account of the resource
Objectives To identify gaps in SPPC provision at a patient and service level at the tertiary centre, local children's hospice and the region, compared to national frameworks and standards. Specialist paediatric palliative care (SPPC) aims to improve quality of life for children with life-limiting and life-threatening conditions. SPPC services were introduced at a tertiary hospital in 2012 and are in their infancy. As an underdeveloped speciality, there are gaps in provision across the region and little research has been carried out to identify them. Methods The last 15 children and young people (CYP) who died and were referred to tertiary SPPC services from the region were identified. Patient data were collected using hospital and hospice care databases and discussions with staff involved in patient care. Service provision data were collected by discussions with service managers. Results Only 80% of children and young people (CYP) had an Advance Care Plan (ACP). Of the CYP who required rapid transfer, none had a documented plan in an ACP. Preferred place of death was achieved in 67% of CYP. The average time from referral to SPPC to death was 38 days. Of the staff training standards, 80% were met at the tertiary centre and 91% at children's hospice. 73% of protocol standards were met by tertiary centre and 91% by the children's hospice. 56% of provision standards were met by tertiary centre and 69% by the children's hospice. 50% of the staffing standards were met at both services. Neither service met any of the data management and service improvement standards. Conclusion These data showed no major gaps in patient care standards, although improvement is needed to ensure all CYP have ACPs. Major gaps were identified in service improvement and data management in comparison to national standards. Providing a 24-hour SPPC service and improving data collection could address this. A limitation of this audit is the small sample size.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.52" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.52</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
Child
Clinical Article
conference abstract
Coulson-Smith P
Durrant E
Female
Hospice Care
Hospices
Human
Male
manager
October List 2030
Palliative Therapy
Patient Care
patient coding
Patient Referral
Place Of Death
Renton K
Sample Size
staff training
tertiary care center
Warlow T
-
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Title
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September 2023 List
Text
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September List 2023
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<a href="http://doi.org/10.32641/andespediatr.v94i3.4382" target="_blank" rel="noreferrer noopener"> http://doi.org/10.32641/andespediatr.v94i3.4382</a>
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Facilitators and barriers perceptions to early referral to pediatric palliative care perceived
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Andes Pediatrica
Date
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2023
Subject
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child; Palliative Care; adult; article; controlled study; female; human; major clinical study; male; palliative therapy; Referral and Consultation; patient referral; pediatrician; clinical practice; multicenter study; religion; perception; demography; professional practice
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Ceballos-Yanez D; Patricio AP; Eugenin-Soto MI
Description
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Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the care of children with cancer. Methods: A 36-question survey based on preliminary, single-institution data was electronically distributed to pediatric oncology physicians, nurse practitioners, nurses, and social workers nationally. The principal outcomes measured included perceived barriers and facilitators to early integration of pediatric palliative care. Data were analyzed using Rv3.1.2 statistical software. Results: Most respondents agreed that the PCT does not negatively impact the role of the oncologist; however, there were concerns that optimal patient care may be limited by pediatric oncologists' need to control all aspects of patient care (P < 0.001). Furthermore, oncologists, more than any provider group, identified that the emotional relationship they form with the patients and families they care for, influences what treatment options are offered and how these options are conveyed (P < 0.01). Education and evidence-based research remain important to all providers. Respondents reached consensus that early integration of a PCT would provide more potential benefits than risks and most would not limit access to palliative care based on prognosis. Conclusions: Overall, providers endorse early integration of the PCT for children with cancer. There remains a continued emphasis on provider and patient education. Palliative care is generally accepted as providing a benefit to children with cancer, though barriers persist and vary among provider groups.
Identifier
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<a href="http://doi.org/10.32641/andespediatr.v94i3.4382" target="_blank" rel="noreferrer noopener">10.32641/andespediatr.v94i3.4382</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
Adult
Andes Pediatrica
Article
Ceballos-Yanez D
Child
Clinical Practice
Controlled Study
Demography
Eugenin-Soto MI
Female
Human
Major Clinical Study
Male
Multicenter Study
Palliative Care
Palliative Therapy
Patient Referral
Patricio AP
Pediatrician
Perception
Professional Practice
Referral And Consultation
Religion
September List 2030
-
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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.
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August List 2023
URL Address
<a href="http://doi.org/10.1111/nicc.12943" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/nicc.12943</a>
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Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit
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Nursing in Critical Care
Date
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2023
Subject
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Infant, Newborn; England; article; human; newborn; newborn death; terminal care; documentation; human tissue; newborn intensive care; patient referral; neonatal intensive care unit; surgery; infant; conversation; nurse; cause of death; eligibility; transplantation; brain injury; cooling; organ donor
Creator
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Ali F; Chant K; Scales A; Sellwood M; Gallagher K
Description
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Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the United Kingdom. Aim: The aim of this audit was to retrospectively determine potential eligibility for neonatal tissue and/or organ donation referral in infants who died in a single UK tertiary-level neonatal unit between 2012 and 2021. Cause of death and documentation of any discussions held regarding referral for donation were also explored. Study design: An audit was undertaken to identify all neonatal deaths at a single tertiary-level NICU in London from 2012-2021. Infants who retrospectively could have been referred as potential tissue and/or organ donors were identified using current NHS Blood and Transplant inclusion and exclusion criteria. Results and conclusion: A significant missed potential for neonatal tissue and/or organ donation referrals was identified, which is likely not just limited to the unit audited. Causes of death were as expected for a tertiary level neonatal unit and centre for therapeutic cooling of babies born with hypoxic perinatal brain injuries. Only one documented conversation was found regarding neonatal donation. Relevance to clinical practice: To enable conversations regarding neonatal donation to become a routine part of end-of-life care discussions with families as appropriate, good links between neonatal healthcare professionals and Specialist Nurses in Organ Donation need to be established. This will facilitate the referral of all suitable neonates as potential donors and ensure that neonatal staff feel supported to care for babies identified as potential donors.
Identifier
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<a href="http://doi.org/10.1111/nicc.12943" target="_blank" rel="noreferrer noopener">10.1111/nicc.12943</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
Ali F
Article
August List 2023
Brain Injury
Cause Of Death
Chant K
Conversation
cooling
Documentation
eligibility
England
Gallagher K
Human
Human Tissue
Infant
Infant, Newborn
Neonatal Intensive Care Unit
Newborn
Newborn Death
Newborn Intensive Care
Nurse
Nursing In Critical Care
organ donor
Patient Referral
Scales A
Sellwood M
Surgery
Terminal Care
Transplantation
-
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Title
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June 2023 List
Text
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June 2022 List
URL Address
<a href="https://journals.sagepub.com/doi/10.1177/10499091231169497">https://journals.sagepub.com/doi/10.1177/10499091231169497</a>
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Title
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Intractable Feeding Intolerance in Children With Severe Neurological Impairment: A Retrospective Case Review of Nine Children Known to a Pediatric Palliative Care Service
Publisher
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Child; Palliative Care; child; article; female; human; male; preschool child; palliative therapy; hospice; clinical article; intensive care; school child; documentation; Only Child; ethics; patient referral; adolescent; infant; stomach tube; deterioration; retrospective study; drug combination; conversation; nomenclature; neurologic disease; feeding difficulty; parenteral nutrition; case study; enteric feeding; neurodisability; digestive system function disorder
Creator
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Katz NT; Cooper MS; Kularatne A; Prebble A; McGrath KH; McCallum Z; Antolovich G; Sutherland I; Sacks BH
Description
An account of the resource
BACKGROUND: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood. <br/>OBJECTIVE(S): (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a contributor to their deterioration or death. (2) To consider terminology to describe the severe end of the spectrum of feeding difficulties in children with SNI. <br/>RESULT(S): Mean age at death was 10.3 years (range: 5 - 15.6), and median time from palliative care referral to death was 3.1 months. Location of death was home (n = 3), hospice (n = 1), and hospital (n = 5) with 1 death in intensive care. Gastrointestinal "failure" or "dysfunction" were documented for 7 children, (median time between documentation and death was 3.9 months (range: .1 to 13.1)). All children were fed via a gastrostomy tube during their life (median age of insertion 2.5 years (range: 1.2 to 6.8 years)), and 7 via the jejunal route (median age of insertion 9.2 years (range 2.4 to 14.7 years)). Children lived a median of 9 percent of their lives after jejunal tube feeding was commenced. No child had home-based parenteral nutrition. Multiple symptom management medications were required. <br/>CONCLUSION(S): 'Intractable feeding intolerance' describes a clinical crossroads in a child's life where there is an opportunity to consider the appropriateness of further interventions. Further work should explore predictors of intractable feeding intolerance and the delicate balance between cause or contributor to death. The importance of clinician-family prognostic conversations and goal-concordant care both during life and in the terminal phase is highlighted.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Identifier
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<a href="https://journals.sagepub.com/doi/10.1177/10499091231169497">10.1177/10499091231169497</a>
2023
Adolescent
American Journal Of Hospice And Palliative Care
Antolovich G
Article
Case Study
Child
Clinical Article
Conversation
Cooper MS
Deterioration
digestive system function disorder
Documentation
drug combination
enteric feeding
Ethics
feeding difficulty
Female
Hospice
Human
Infant
Intensive Care
June 2022 List
Katz NT
Kularatne A
Male
McCallum Z
McGrath KH
Neurodisability
Neurologic Disease
Nomenclature
Only Child
Palliative Care
Palliative Therapy
Parenteral Nutrition
Patient Referral
Prebble A
Preschool Child
Retrospective Study
Sacks BH
School Child
stomach tube
Sutherland I
-
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Title
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July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.3390/children8080615" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children8080615</a>
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Title
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Specialized pediatric palliative care services in pediatric hematopoietic stem cell transplant centers
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
hematopoietic stem cell transplantation; palliative therapy; advance care planning; article; bereavement counseling; bereavement support; cause of death; child; controlled study; descriptive research; ethics; female; Hematopoietic Stem Cells; home; hospice; hospital; human; in-hospital mortality; major clinical study; male; mortality; Palliative Care; patient referral; pediatric intensive care unit; place of death; relapse; retrospective study; spiritual care; Stem Cell Transplantation
Creator
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Mekelenkamp H; Schroder T; Trigoso E; Hutt D; Galimard JE; Kozijn A; Dalissier A; Gjergji M; Liptrott S; Kenyon M; Murray J; Corbacioglu S; Bader P
Description
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Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provide insight into current data on the place and cause of death of transplanted children, the available specialized pediatric palliative care services (SPPCS), and what services HSCT professionals feel the SPPCS team should provide. First, a retrospective database analysis on the place and cause of death of transplanted pediatric HSCT patients was performed. Second, a survey was performed addressing the availability of and views on SPPCS among HSCT professionals. Database analysis included 233 patients of whom the majority died in-hospital: 38% in the pediatric intensive care unit, 20% in HSCT units, 17% in other hospitals, and 14% at home or in a hospice (11% unknown). For the survey, 98 HSCT professionals from 54 centers participated. Nearly all professionals indicated that HSCT patients should have access to SPPCS, especially for pain management, but less than half routinely referred to this service at an early stage. We, therefore, advise HSCT teams to integrate advance care planning for pediatric HSCT patients actively, ideally from diagnosis, to ensure timely SPPCS involvement and maximize end-of-life preparation.Copyright © 2021 by the authors. Licensee MDPI, Basel, Switzerland.
Identifier
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<a href="http://doi.org/10.3390/children8080615" target="_blank" rel="noreferrer noopener">10.3390/children8080615</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).
2021
Advance Care Planning
Article
Bader P
Bereavement Counseling
Bereavement Support
Cause Of Death
Child
Children
Controlled Study
Corbacioglu S
Dalissier A
Descriptive Research
Ethics
Female
Galimard JE
Gjergji M
Hematopoietic stem cell transplantation
Hematopoietic Stem Cells
Home
Hospice
Hospital
Human
Hutt D
in-hospital mortality
July List 2023
Kenyon M
Kozijn A
Liptrott S
Major Clinical Study
Male
Mekelenkamp H
Mortality
Murray J
Palliative Care
Palliative Therapy
Patient Referral
Pediatric Intensive Care Unit
Place Of Death
relapse
Retrospective Study
Schroder T
Spiritual Care
Stem Cell Transplantation
Trigoso E
-
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Title
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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/10.1016/j.jpainsymman.2023.02.006" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.02.006</a>
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The Landscape of Outpatient Pediatric Palliative Care: A National Cross-Sectional Assessment
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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
2023
Subject
The topic of the resource
outpatient; palliative therapy; program development; advance care planning; analgesia; article; Cesarean Section; child; controlled study; demographics; funding; hospital patient; human; Palliative Care; patient referral; school child; United States; workflow
Creator
An entity primarily responsible for making the resource
Autrey AK; James C; Mothi SS; Stafford C; Morvant A; Miller EG; Kaye EC
Description
An account of the resource
Abstract Context: Inpatient pediatric palliative care (PPC) has grown substantially over the past 20 years; however, PPC in the outpatient setting remains underdeveloped. Outpatient PPC (OPPC) offers opportunities to improve access to PPC as well as facilitate care coordination and transitions for children with serious illness. Objectives: This study aimed to characterize the national status of OPPC programmatic development and operationalization in the United States. Methods: Utilizing a national report, freestanding children's hospitals with existing PPC programs were identified to query OPPC status. An electronic survey was developed and distributed to PPC participants at each site. Survey domains included hospital and PPC program demographics; OPPC development, structure, staffing, and workflow; metrics of successful OPPC implementation; and other services/partnerships. Results: Of 48 eligible sites, 36 (75%) completed the survey. Clinic-based OPPC programs were identified at 28 (78%) sites. OPPC programs reported a median age of 9 years [range: 1-18 years] with growth peaks in 2011, 2012 and 2020. OPPC availability was significantly associated with increased hospital size [p= 0.05] and inpatient PPC billable full time equivalent staff [p= 0.01]. Top referral indications included pain management, goals of care, and advance care planning. Funding primarily came from institutional support and billing revenue. Conclusions: Although OPPC remains a young field, many inpatient PPC programs are growing into the outpatient setting. Increasingly, OPPC services have institutional support and diverse referral indications from multiple subspecialties. However, despite high demand, resources remain limited. Characterization of the current OPPC landscape is crucial to optimize future growth.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2023.02.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.02.006</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Advance Care Planning
Analgesia
Article
Autrey AK
Cesarean Section
Child
Controlled Study
Demographics
Funding
Hospital Patient
Human
James C
Journal of Pain and Symptom Management
Kaye EC
May List 2023
Miller EG
Morvant A
Mothi SS
Outpatient
Palliative Care
Palliative Therapy
Patient Referral
Program Development
School Child
Stafford C
United States
workflow
-
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Title
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April 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
April List 2023
URL Address
<a href="http://doi.org/10.1055/s-0041-1730916" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1055/s-0041-1730916</a>
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Title
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Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease
Publisher
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Journal of Pediatric Intensive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
intensive care unit; Palliative Care; child; article; female; human; major clinical study; male; newborn; retrospective study; advance care planning; palliative therapy; medical decision making; pediatrics; artificial ventilation; terminal care; hospitalization; information technology; hospital patient; patient referral; life sustaining treatment; congenital heart disease; consultation; mortality; pulmonary hypertension; infant; hospitalized child; length of stay; pediatric patient; extracorporeal oxygenation; disease course; cardiomyopathy; heart disease; catheterization; myocarditis; myopericarditis; pericarditis
Creator
An entity primarily responsible for making the resource
Green DJ; Bennett E; Olson LM; Wawrzynski S; Bodily S; Moore D; Mansfield KJ; Wilkins V; Cook L; Delgado-Corcoran C
Description
An account of the resource
Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7-128). Death often occurred in the intensive care unit (n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies (n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.Copyright © 2023 Georg Thieme Verlag. All rights reserved.
Identifier
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<a href="http://doi.org/10.1055/s-0041-1730916" target="_blank" rel="noreferrer noopener">10.1055/s-0041-1730916</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
Advance Care Planning
April List 2023
Article
Artificial Ventilation
Bennett E
Bodily S
Cardiomyopathy
Catheterization
Child
Congenital Heart Disease
Consultation
Cook L
Delgado-Corcoran C
Disease Course
extracorporeal oxygenation
Female
Green DJ
heart disease
Hospital Patient
Hospitalization
Hospitalized Child
Human
Infant
information technology
Intensive Care Unit
Journal of Pediatric Intensive Care
Length Of Stay
Life Sustaining Treatment
Major Clinical Study
Male
Mansfield KJ
Medical Decision Making
Moore D
Mortality
Myocarditis
myopericarditis
Newborn
Olson LM
Palliative Care
Palliative Therapy
Patient Referral
pediatric patient
Pediatrics
pericarditis
pulmonary hypertension
Retrospective Study
Terminal Care
Wawrzynski S
Wilkins V
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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/10.1136/spcare-2022-HUNC.80" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2022-HUNC.80</a>
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Title
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Local Paediatric Death Data for Barnet 2015- 2021: Which Children are Potentially Eligible for Hospice Care?
Publisher
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BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Hospice Care; Awareness; Child; Child; child death; clinical article; conference abstract; data analysis; England; Female; Hospice Care; Hospice; hospital admission; hospital mortality; Human; information center; Male; medical history; Only Child; Palliative Therapy; patient referral; prevalence; Retrospective Study; social care; time of death
Creator
An entity primarily responsible for making the resource
Opstad H
Description
An account of the resource
Background Estimating the local population needs for children's palliative care services can prove challenging. Data has shown that most children die in hospital and not all children with life-limiting conditions (LLC) are known to local hospices at their time of death (Williams & Horsley, 2015). A recent survey conducted by Noah's Ark of North London Paediatric teams, showed that 90% of those surveyed had looked after patients with LLC and not referred them on to their local hospice (Opstad, 2021). Epidemiological studies have sought to estimate the prevalence within local populations (Williams & Horsley, 2015) of children with LLC, looking at NHS digital data (Fraser, Gibson- Smith, Jarvis, et al., 2020. Palliat Med.) from hospital admissions (Health & Social Care Information Centre, 2015). These estimations, however, come with limitations. Aims 1. Identify the causes and locations of child deaths in the local population. 2. Determine which children would have potentially met criteria for hospice referral. Design Records of local death data were analysed, with specific reference to cause and location of death and past medical history which would have made them eligible for hospice care. Results Over the six-year period analysed there were an average of 26 deaths per year from all causes. Between 5 and 18 children were found to meet hospice referral criteria each year (an average of 10 per year). 139 of the 154 total deaths occurred in hospital (90%) from all causes, but 43 (28%) of those deaths were in children with LLC and were expected. Just 19 children (12%) had a planned death at home or in a hospice setting over the sixyear period analysed. Conclusions This data supports the hypothesis from epidemiological studies that there is unmet need within the local population. Some families may choose for their child to die in a hospital, and it is difficult to scrutinise this element of choice in retrospective data analysis. However, there is clearly need for greater awareness amongst paediatric teams and families of the services offered by local hospices.
Identifier
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<a href="http://doi.org/10.1136/spcare-2022-HUNC.80" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.80</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
Awareness
BMJ Supportive and Palliative Care
Child
Child Death
Clinical Article
conference abstract
Data Analysis
England
Female
Hospice
Hospice Care
Hospital Admission
Hospital Mortality
Human
information center
Male
March List 2023
Medical History
Only Child
Opstad H
Palliative Therapy
Patient Referral
Prevalence
Retrospective Study
Social Care
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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2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1089/jayao.2021.0225" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jayao.2021.0225</a>
Dublin Core
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Factors Affecting Hospice Use Among Adolescents and Young Adult Cancer Patients
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Journal of adolescent and young adult oncology
Date
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2022
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Noh H; Bui C; Mack JW
Description
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Background/Objective: Compared to existing studies on end-of-life care of mid- to older-aged patients diagnosed with cancer, there is a paucity of research on adolescents and young adult (AYA) patients. Guided by the Anderson's Behavioral Model for Healthcare Utilization, this study examined predisposing/enabling/need factors associated with hospice referral/enrollment among AYA patients diagnosed with cancer. Method(s): Data were drawn from medical records of AYA patients who died of cancer between January 2013 and December 2016 at three academic sites in the United States and were 15-39 years old at the time of death. Logistic regression was conducted (N=224). Result(s): Findings showed that hospice referral was strongly associated with hospice enrollment (odds ratio [OR]=69.68, p<0.0001). White patients were more likely to be referred to hospice care than non-White patients; the effect was, however, significant only among patients with private insurance (OR=3.44, p=0.040). Patients with public insurance were more likely to be referred to hospice than those with private insurance; the effect was, however, significant only among non-White patients (OR=5.66, p=0.005). Among those not receiving cancer treatment in the last month of life (LML), patients with hematologic malignancies were less likely to be referred to hospice than those with solid tumors (OR=0.19). Among patients with solid tumors, receiving cancer treatment in the LML lowered the odds of hospice referral (OR=0.50, p=0.043). Conclusion(s): Further research efforts are needed to investigate the role of race, insurance, cancer types, and treatments in hospice use among bigger samples of AYA patients diagnosed with cancer.
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<a href="http://doi.org/10.1089/jayao.2021.0225" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0225</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
2022 Special Edition 3 - Oncology List
Adolescent
Adult
Article
Bui C
cancer model
Cancer Patient
Cancer Therapy
Controlled Study
Female
Health Care Utilization
Hematologic Malignancy
Hospice Care
Humans
Insurance
Journal Of Adolescent And Young Adult Oncology
Mack JW
Major Clinical Study
Male
Medical Record
Noh H
Patient Referral
psychological model
race
solid malignant neoplasm
time of death
United States
Young Adult
-
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Title
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November 2022 List
Text
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November 2022 List
URL Address
<a href="http://doi.org/10.1007/s11845-022-03134-3" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s11845-022-03134-3</a>
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Palliative Care Services for Children with Life-Limiting Conditions
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Irish Journal of Medical Science
Date
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2022
Subject
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Palliative Therapy; Ireland; Adolescent; Article; Child; Cohort Analysis; Community Support; Controlled Study; Hospice; Human; Major Clinical Study; Male; Nurse; Patient Referral; Place of Death; Residential Care; Retrospective Study; Social Welfare; Terminal Care
Creator
An entity primarily responsible for making the resource
Hayden J; Larkin MA; Noonan H; Conroy M; Twomey F; O'Reilly V; Gallagher S
Description
An account of the resource
Background: Palliative care (PC) for children with life-limiting conditions (LLC) is a holistic approach to achieve the best quality of life. Aim(s): Highlighting collaboration between pediatric and PC services is essential in providing seamless care. Method(s): Retrospective data obtained including patient cohort, disease profile, place of death, and the resource requirements for children with a LLC in the Mid-West region of Ireland over a 7-year period. Result(s): Seventy-seven patients were identified (n = 77); five still receiving care, four discharged, and 68 have died. The cohort ranged in age from 1 day to 17 years with a mean of approximately 6 years. Thirty-five percent of patients were less than 1 year old. Fifty-one percent were male. Seventy-one percent were referred initially to PC for end-of-life care and 29% for symptom management. Forty-four percent had home support services in place prior to referral to PC. An advanced care plan was created for 65%. Of those that died (n = 68), 70.5% died at home, 25% in hospital, and 4.4% in residential care or a children's hospice. The clinical nurse coordinator for children with life-limiting conditions (CNCCLLC) was involved with 88% of patients. The specialist PC teams were involved with 87%; 65 patients had community support, 31 patients had in-hospital support, and 29 patients were seen by both hospital and community services. Conclusion(s): Our study highlights the growing number of LLCs and current pediatric and PC services require further resources and development.Copyright © 2022, The Author(s), under exclusive licence to Royal Academy of Medicine in Ireland.
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<a href="http://doi.org/10.1007/s11845-022-03134-3" target="_blank" rel="noreferrer noopener">10.1007/s11845-022-03134-3</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Adolescent
Article
Child
Male
Nurse
Terminal Care
2022
Cohort Analysis
community support
Conroy M
Controlled Study
Gallagher S
Hayden J
Hospice
Human
Ireland
Irish Journal Of Medical Science
Larkin MA
Major Clinical Study
Noonan H
November 2022 List
O'Reilly V
Palliative Therapy
Patient Referral
Place Of Death
residential care
Retrospective Study
Social Welfare
Twomey F
-
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Title
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August 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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August 2022 List
URL Address
<a href="http://doi.org/10.1177/08258597221098496" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/08258597221098496</a>
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Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty
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Journal of palliative care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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female; grief; ethics; human; perinatal care; uncertainty; article; palliative therapy; comfort; fetus; patient referral; infant; bereavement support; decision making
Creator
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Lord S; Williams R; Pollard L; Ives-Baine L; Wilson C; Goodman K; Rapoport A
Description
An account of the resource
Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty. For clinicians who counsel families in these circumstances, determining which ones might benefit from early palliative care referral can be challenging. We assert that all women carrying a fetus diagnosed with a life-threatening condition for which comfort-focused care at birth is one ethically reasonable option ought to be offered palliative care support prenatally, regardless of the chosen plan of care. Early palliative care support can contribute to informed decision making, enhance psychological and grief support, and provide opportunities for care planning that includes ways to respect and honor the life of the fetus or baby, however long it may be.
Identifier
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<a href="http://doi.org/10.1177/08258597221098496" target="_blank" rel="noreferrer noopener">10.1177/08258597221098496</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
Bereavement Support
Comfort
Decision Making
Ethics
Female
Fetus
Goodman K
Grief
Human
Infant
Ives-Baine L
Journal Of Palliative Care
Lord S
Palliative Therapy
Patient Referral
Perinatal Care
Pollard L
Rapoport A
Uncertainty
Williams R
Wilson C
-
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Title
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2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.010" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.08.010</a>
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Title
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Seven Types of Uncertainty When Clinicians Care for Pediatric Patients With Advanced Cancer
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Journal of Pain and Symptom Management
Date
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2020
Subject
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child; human; palliative therapy; controlled study; article; pediatrics; childhood cancer; patient referral; Uncertainty; qualitative analysis; cancer patient; cancer prognosis; oncologist; pediatric patient; semi structured interview; organization; care behavior; Advanced cancer
Creator
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Hill D L; Walter J K; Szymczak J E; DiDomenico C; Parikh S; Feudtner C
Description
An account of the resource
Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.010" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.010</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
Advanced Cancer
Article
Cancer Patient
Cancer Prognosis
care behavior
Child
Childhood Cancer
Controlled Study
DiDomenico C
Feudtner C
Hill D L
Human
Journal of Pain and Symptom Management
Oncologist
Oncology 2020 List
Organization
Palliative Therapy
Parikh S
Patient Referral
pediatric patient
Pediatrics
Qualitative Analysis
Semi Structured Interview
Szymczak J E
Uncertainty
Walter J 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
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April 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
April 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/649" target="_blank" rel="noreferrer noopener">https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/649</a>
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Title
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Introduction of triggers for palliative care consultation improve utilization and and satisfaction within a level 4 NICU
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
awareness; conference abstract; controlled study; human; infant; leadership; medical record review; needs assessment; nurse; palliative therapy; patient referral; physician; practice guideline; satisfaction
Creator
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Nguyen L T; Spear M L
Description
An account of the resource
The use of a palliative care guideline in infants remains controversial in the NICU community. Triggers are only intermittently utilized within the NICU setting. Most NICUs implement strategies for near-death care, but few have guidelines for those with medically complex conditions that have potential in progressing towards death. It may be helpful to utilize written criteria for palliative care consultation (PCC) for patients who can benefit from early referral. Thus, our specific aim is to increase the number of PCCs within our level 4 NICU by 20% by the end of December 2016. Our global aim is to improve the care of the medically complex infant in need of multidisciplinary management, which includes palliative care services provided by our palliative care team (named CORE team). The need for a list of triggers was found after distributing a needs assessment survey amongst bedside nurses, nurse practioners, fellows, and attendings. The list was adapted from Caitlin and Carter (2002), and development included input from NICU leadership. The list was posted in the physician workrooms (Figure 1). Bi-monthly reminders were sent out to the NICU fellows on service to review their team's census, identify those who met criteria for PCC, and were encouraged to discuss these patients and their indications for PCC during daily multidisciplinary rounds. After 6 months, a post implementation survey was distributed. Medical chart review of each NICU admission since January 2014 was done to assess which patients met criteria for PCC, how many received a PCC, and the number of days between date of admission and the initial consultation. Prior to implementation, of those who qualified for PCC, 26% received consultation. After implementation, the percentage increased to 46%. The post implementation survey found an increase in understanding the CORE team's role in the NICU, knowing when to consult, and awareness of a positive difference within the NICU since utilizing their services more frequently (Figure 2a). Lastly, the time until initial consultation decreased from approximately two months to one week (Figure 2b). We achieved our goal of increasing the number of PCC. The listed triggers helped establish prompt and proactive referral to the palliative care team at our institution. Not only can a written guideline increase awareness of a palliative care team's role within a NICU, but it also enhances the satisfaction amongst providers of the care they are giving. Next steps include involving the CORE team during weekly multidisciplinary rounds, as well as developing a strategy for those who can benefit from CORE team within 24 hours or overnight. We speculate that utilization of palliative care within the NICU can help guide revision of treatment goals, and provide continuity of care and support to families in need of resources.
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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 2020 List
Awareness
conference abstract
Controlled Study
Human
Infant
Leadership
Medical Record Review
Needs Assessment
Nguyen L T
Nurse
Palliative Therapy
Patient Referral
Pediatrics
Physician
Practice Guideline
Satisfaction
Spear M L
-
Dublin Core
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Title
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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="http://doi.org/10.1016/j.jpainsymman.2019.12.134" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.134</a>
Dublin Core
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Title
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Sign Me Up! Understanding Referral and Enrollment to Community-Based Pediatric Hospice and Palliative Care (FR420D)
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
2020
Subject
The topic of the resource
child; cohort analysis; conference abstract; controlled study; demography; female; hospice; human; insurance; major clinical study; male; neonatal intensive care unit; nervous system; palliative therapy; patient referral; pediatric hospital; preschool child; retrospective study; speech; total quality management
Creator
An entity primarily responsible for making the resource
Lotstein D; Caliboso M; Lindley L; Wolfe J
Description
An account of the resource
Objectives: * List the types of community-based hospice and palliative care programs for children and describe barriers and facilitators to the use of these programs. * Describe the rates of referral and enrollment to community-based programs, factors associated with referral, and describe how these findings can be used to improve access to appropriate use of community-based care. Original Research Background: While access to community-based hospice and palliative care programs has increased for seriously ill children, we know little on a population level about which children are referred and enrolled into these programs. Research Objectives: To describe referrals and enrollment for community-based care from a hospital-based pediatric palliative care (PPC) service, and to identify factors associated with referral.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.134" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.134</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
Caliboso M
Child
Cohort Analysis
conference abstract
Controlled Study
Demography
Female
Hospice
Human
Insurance
Journal of Pain and Symptom Management
Lindley L
Lotstein D
Major Clinical Study
Male
March 2020 List
Neonatal Intensive Care Unit
Nervous System
Palliative Therapy
Patient Referral
Pediatric Hospital
Preschool Child
Retrospective Study
Speech
Total Quality Management
Wolfe J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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>
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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
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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.
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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
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
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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/cncr.32609" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cncr.32609</a>
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Title
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End-of-life care among adolescent and young adult patients with cancer living in poverty
Publisher
An entity responsible for making the resource available
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; adult; article; cancer patient; cancer therapy; controlled study; female; hospice; hospital patient; human; insurance; lowest income group; male; medical record; multicenter study; palliative therapy; patient referral; poverty; retrospective study; statistical significance; terminal care; young adult
Creator
An entity primarily responsible for making the resource
Roeland E J; Lindley L C; Gilbertson-White S; Saeidzadeh S; Currie E R; Friedman S; Bakitas M; Mack J W
Description
An account of the resource
Background: To the authors' knowledge, end-of-life (EOL) care outcomes among adolescents and young adults (AYAs) with cancer who are living in poverty remain poorly understood. The primary aim of the current study was to examine the effect of poverty on EOL care for AYA patients with cancer.
Identifier
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<a href="http://doi.org/10.1002/cncr.32609" target="_blank" rel="noreferrer noopener">10.1002/cncr.32609</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
Adult
Article
Bakitas M
Cancer
Cancer Patient
Cancer Therapy
Controlled Study
Currie E R
Female
Friedman S
Gilbertson-White S
Hospice
Hospital Patient
Human
Insurance
Lindley L C
lowest income group
Mack J W
Male
Medical Record
Multicenter Study
Oncology 2019 List
Palliative Therapy
Patient Referral
Poverty
Retrospective Study
Roeland E J
Saeidzadeh S
Statistical Significance
Terminal Care
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 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="https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/393">https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/393</a>
Dublin Core
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Title
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Increasing accurate palliative care consultation in the NICU
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
caregiver; child; conference abstract; controlled study; human; International Classification of Diseases; length of stay; mortality risk; newborn; nurse practitioner; outcome assessment; palliative therapy; patient referral; satisfaction; staff training; total quality management
Creator
An entity primarily responsible for making the resource
Humphrey L; Schlegel A
Description
An account of the resource
Background: NICU length of stay (LOS) data revealed patient outliers with significantly longer LOS and concomitant increased risk of mortality. Baseline data revealed under-utilization of Pediatric Palliative Care (PPC) consultative services in this population. We desired that those at highest risk of extended LOS with associated mortality receive early PPC consultation. Our multidisciplinary quality improvement project aimed to increase PPC consultation for NICU patients with a life-limiting anomaly identified by trigger-list tool to 80% within one year.
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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
Caregiver
Child
conference abstract
Controlled Study
February 2020 List
Human
Humphrey L
International Classification of Diseases
Length Of Stay
mortality risk
Newborn
Nurse Practitioner
outcome assessment
Palliative Therapy
Patient Referral
Pediatrics
Satisfaction
Schlegel A
staff training
Total Quality Management
-
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
An entity primarily responsible for making the resource
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
An unambiguous reference to the resource within a given context
<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
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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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="http://doi.org/10.1542/peds.2019-0160" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2019-0160</a>
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Title
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Integration of Pediatric Palliative Care Into Cardiac Intensive Care: A Champion-Based Model
Publisher
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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; child; human; palliative therapy; skill; coronary care unit; multicenter study; staff; patient referral; clinician; hospitalization; total quality management; mortality; comorbidity; conceptual framework; consensus; feasibility study; heart disease; morbidity; rotation
Creator
An entity primarily responsible for making the resource
Moynihan K M; Snaman J M; Kaye E C; Morrison W E; DeWitt A G; Sacks L D; Thompson J L; Hwang J M; Bailey V; Lafond D A; Wolfe J; Blume E D
Description
An account of the resource
Integration of pediatric palliative care (PPC) into management of children with serious illness and their families is endorsed as the standard of care. Despite this, timely referral to and integration of PPC into the traditionally cure-oriented cardiac ICU (CICU) remains variable. Despite dramatic declines in mortality in pediatric cardiac disease, key challenges confront the CICU community. Given increasing comorbidities, technological dependence, lengthy recurrent hospitalizations, and interventions risking significant morbidity, many patients in the CICU would benefit from PPC involvement across the illness trajectory. Current PPC delivery models have inherent disadvantages, insufficiently address the unique aspects of the CICU setting, place significant burden on subspecialty PPC teams, and fail to use CICU clinician skill sets. We therefore propose a novel conceptual framework for PPC-CICU integration based on literature review and expert interdisciplinary, multi-institutional consensus-building. This model uses interdisciplinary CICU-based champions who receive additional PPC training through courses and subspecialty rotations. PPC champions strengthen CICU PPC provision by (1) leading PPC-specific educational training of CICU staff; (2) liaising between CICU and PPC, improving use of support staff and encouraging earlier subspecialty PPC involvement in complex patients' management; and (3) developing and implementing quality improvement initiatives and CICU-specific PPC protocols. Our PPC-CICU integration model is designed for adaptability within institutional, cultural, financial, and logistic constraints, with potential applications in other pediatric settings, including ICUs. Although the PPC champion framework offers several unique advantages, barriers to implementation are anticipated and additional research is needed to investigate the model's feasibility, acceptability, and efficacy. Copyright © 2019 by the American Academy of Pediatrics.
Identifier
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<a href="http://doi.org/10.1542/peds.2019-0160" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-0160</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
Bailey V
Blume E D
Child
Clinician
Comorbidity
Conceptual Framework
Consensus
coronary care unit
DeWitt A G
Feasibility Study
heart disease
Hospitalization
Human
Hwang J M
Kaye E C
Lafond D A
Morbidity
Morrison W E
Mortality
Moynihan K M
Multicenter Study
October 2019 List
Palliative Therapy
Patient Referral
Pediatrics
Rotation
Sacks L D
Skill
Snaman J M
Staff
Thompson J L
Total Quality Management
Wolfe J
-
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.
Citation List Month
September 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0292" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0292</a>
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Title
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Implications of Pediatric Palliative Consultation for Intensive Care Unit Stay
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; child; cohort analysis; female; human; major clinical study; male; retrospective study; controlled study; childhood cancer; pediatric hospital; Caucasian; length of stay; palliative therapy; pediatric intensive care unit; child hospitalization; confidence interval; demography; health insurance; hospital admission; infant; newborn; patient referral
Creator
An entity primarily responsible for making the resource
Rossfeld ZM; Miller R; Tumin D; Tobias JD; Humphrey LM
Description
An account of the resource
Background: The impact of specialty pediatric palliative care (PPC) on intensive care unit (ICU) length of stay for children is unclear. Objective: To estimate the impact of PPC consultation by analyzing ICU stay as a dynamic outcome over the course of hospitalization. Patients and Methods: Retrospective cohort study of children hospitalized with diagnoses suggested as referral triggers for PPC at a large academic children's hospital. We assessed ICU stay according to PPC consultation and, using a patient-day analysis, applied multivariable mixed effects logistic regression to predict the odds of being in the ICU on a given day. Results: The analytic sample included 777 admissions (11,954 hospital days), of which 100 admissions (13%) included PPC consultation. Principal patient demographics were age 8 ± 6 years, 55% male sex, 71% white race, and 52% commercial insurance. Cardiac diagnoses were most frequent (29%) followed by gastrointestinal (22%) and malignant (20%) conditions. Although total ICU stay was longer for admissions, including PPC consultation (compared to admissions where PPC was not consulted), the odds of being in the ICU on a given day were reduced by 79% after PPC consultation (odds ratio [OR] = 0.21; 95% confidence interval [CI]: 0.13-0.34; p < 0.001) for children with cancer and 85% (OR = 0.15; 95% CI: 0.08-0.26; p < 0.001) for children with nononcologic conditions. Conclusions: Among children hospitalized with a diagnosis deemed eligible for specialty PPC, the likelihood of being in the ICU on a given day was strongly reduced after PPC consultation, supporting the value of PPC.
Identifier
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<a href="http://doi.org/10.1089/jpm.2018.0292" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0292</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
Adult
Article
Caucasian
Child
child hospitalization
Childhood Cancer
Cohort Analysis
confidence interval
Controlled Study
Demography
Female
health Insurance
Hospital Admission
Human
Humphrey LM
Infant
Journal of Palliative Medicine
Length Of Stay
Major Clinical Study
Male
Miller R
Newborn
Palliative Therapy
Patient Referral
Pediatric Hospital
Pediatric Intensive Care Unit
Retrospective Study
Rossfeld ZM
September 2019 List
Tobias JD
Tumin D
-
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>
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Title
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Palliative care referral patterns for children with cancer: A three-year retrospective study
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
quality of life; infant; hospice; oncology; Korea; terminal care; lymphoma; palliative therapy; major clinical study; central nervous system; cancer patient; hospital patient; school child; pediatric ward; solid malignant neoplasm; time of death; patient referral; conference abstract; statistical analysis; human; child; female; male; diagnosis; resuscitation; emergency ward; intensive care unit; retrospective study; leukemia; outpatient department
Creator
An entity primarily responsible for making the resource
Kim MS; Kim CH; Moon YJ; Song IG; Shin HY
Description
An account of the resource
Background/Objectives: Although Pediatric palliative care (PPC) has developed worldwide with the increasing number of children with serious illness, the concept of Pediatric palliative care is still unfamiliar in Asia. We report on Pediatric cancer patient referral patterns to a new PPC team at a university-affiliated children's hospital in Korea. Design/Methods: We examined our PPC database and performed descriptive statistical analysis of patient referral from hemato-oncology Department. Results: From April 2015 to March 2018, 142 patients were referred to PPC team from hemato-oncology Department. Ten patients (7.0%) were not seen in consultation by our team because of refusal of palliative care, referral to another hospital, or immediate death before consultation. Of 132 patients, eight patients were under 1 year-old, 53 were ages 1 to 9 years, 54 were ages 10-18 years, and 17 were older than 18. Most of our patients (72.0%) lived in distant region from our hospital and 76 patients (58%) were male. Diagnoses included solid tumor (35.6%), primary CNS (32.6%) and leukemia/lymphoma (29.5%). Significant number of patients were referred while in the Pediatric ward (76.5%), and 18.2% and 5.3% were from outpatient clinic and intensive care unit, respectively. Lastly, 84 patients (63.6%) died during the observation period, and of those, 61 (72.6%) died in an inpatient setting, 13 (15.5%) died at home, 9 (10.7%) died at hospice facilities, and one (1.2%) died in the emergency Department. At the time of death, most patients (95.2%) did not receive cardiopulmonary resuscitation (CPR) according to the end-of-life care plan, but 3 patients received CPR. The median age at death was 11.2 years. Conclusions: We report the palliative care referral patterns of Pediatric cancer patients in Korean children's hospital. To improve the quality of life of children with cancer, their palliative care needs should be identified and appropriate services be provided.
Identifier
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<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Cancer Patient
Central Nervous System
Child
conference abstract
Diagnosis
Emergency Ward
Female
Hospice
Hospital Patient
Human
Infant
Intensive Care Unit
Kim CH
Kim MS
Korea
Leukemia
Lymphoma
Major Clinical Study
Male
Moon YJ
Oncology
Oncology 2018 List
outpatient department
Palliative Therapy
Patient Referral
Pediatric Blood and Cancer
pediatric ward
Quality Of Life
Resuscitation
Retrospective Study
School Child
Shin HY
solid malignant neoplasm
Song IG
statistical analysis
Terminal Care
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
A name given to the resource
2018 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/10.18632/oncotarget.21188" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.18632/oncotarget.21188</a>
Dublin Core
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Title
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End-of-life care in children with hematologic malignancies
Publisher
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Oncotarget
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
home care; adolescent; blood transfusion; retrospective study; 52-26-6 (morphine); 57-27-2 (morphine); prescription; cohort analysis; fatigue; morphine/dt [Drug Therapy]; patient referral; treatment duration; human; article; child; female; male; controlled study; adult; terminal care; clinical article; child care; palliative therapy; intensive care unit; walking difficulty; hematologic malignancy/dt [Drug Therapy]; hematologic malignancy/th [Therapy]; hematologic malignancy/dt [Drug Therapy]; hospital mortality; mucosa inflammation; pallor; petechia; somnolence
Creator
An entity primarily responsible for making the resource
Hoell JI; Warfsmann J; Balzer S; Borkhardt A; Janssen G; Kuhlen M
Description
An account of the resource
Introduction: Hematologic malignancies (HM) represent the most common neoplasms in childhood. Despite improved overall survival rates, they are still a major contributor to cancer death in children. Aims: To determine the proportion of children with HM in pediatric palliative care (PPC) and to identify the clinical characteristics and symptoms in comparison to children with extracranial solid tumors (non HM patients). Patients and Methods: This study was conducted as a single-center retrospective cohort study of patients in the care of a large specialized PPC team. Results: Fifteen HM and 50 non HM patients were included. Symptoms in which HM patients scored significantly higher than non HM patients were mucositis, difficulty moving, somnolence, fatigue, petechiae and paleness. Blood transfusions were more frequently administered to HM patients, but large external hemorrhage was not observed in any child. A large variety of drugs and appliances were needed by the patients, with morphine being the most frequently prescribed drug. During the study period, a much larger and over the years even increasing number of HM patients (not in the care of the PPC team) died in hospital with an (assumed) curative intent, with two thirds dying in the ICU. Conclusions: Children with HM were referred to outpatient PPC with almost the full clinical picture of advanced leukemia. Noteworthy, the number of children with HM dying at home is decreasing in our center, instead a substantial proportion received high-intensity medical hospital care including novel anticancer therapies. These patients thus seem to be at an increased risk of dying in hospital as the right time to transfer them to palliative care is oftentimes missed.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.18632/oncotarget.21188" target="_blank" rel="noreferrer noopener">10.18632/oncotarget.21188</a>
2017
52-26-6 (morphine)
57-27-2 (morphine)
Adolescent
Adult
Article
Balzer S
Blood Transfusion
Borkhardt A
Child
Child Care
Clinical Article
Cohort Analysis
Controlled Study
Fatigue
Female
hematologic malignancy/dt [Drug Therapy]
hematologic malignancy/th [Therapy]
Hoell JI
Home Care
Hospital Mortality
Human
Intensive Care Unit
Janßen G
Kuhlen M
Male
Morphine/dt [drug Therapy]
mucosa inflammation
Oncology 2018 List
Oncotarget
Palliative Therapy
pallor
Patient Referral
petechia
prescription
Retrospective Study
somnolence
Terminal Care
treatment duration
walking difficulty
Warfsmann J
-
Dublin Core
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>
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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
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
An entity responsible for making the resource available
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
2018 Developing World List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Developing World 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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Integrating palliative care into the care of paediatric patients at a referral hospital in ghana
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
2018
Subject
The topic of the resource
pain assessment; oncology ward; education; palliative therapy; communication skill; health care personnel; child health; middle income country; pediatric ward; patient referral; analgesic agent; conference abstract; psychosocial care; human; child; controlled study; pediatric patient; doctor nurse relation; teaching hospital; Ghana
Creator
An entity primarily responsible for making the resource
Paintsil V; Ossei-Sekyere B; Osei-Tutu L; Asiamah C
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Analgesic Agent
Asiamah C
Child
Child Health
Communication Skill
conference abstract
Controlled Study
Developing World 2018 List
doctor nurse relation
Education
Ghana
Health Care Personnel
Human
middle income country
oncology ward
Osei-Tutu L
Ossei-Sekyere B
Pain Assessment
Paintsil V
Palliative Therapy
Patient Referral
Pediatric Blood and Cancer
pediatric patient
pediatric ward
psychosocial care
teaching 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
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December 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.
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December 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1002/pbc.27455</a>
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Title
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A new kind of language barrier: Examining disparities in medical teams' referrals of palliative care patients to Pediatric psychology
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
United States; death; education; palliative therapy; retrospective study; cancer patient; language; complication; malignant neoplasm; patient referral; conference abstract; medical record review; human; child; female; male; controlled study; adult; pediatric patient; child psychology; biological product; social care; speech
Creator
An entity primarily responsible for making the resource
Schneider N; Steinberg D; Karfunkle B
Description
An account of the resource
Background/Objectives: As cancer care has improved, so has the understanding that children with cancer are at risk for psychological distress. The American Academy of Pediatrics has highlighted the importance of addressing these concerns. Our study aims to identify how cultural and language factors may influence whether psychology is involved in a patient and family's care. Preliminary literature in adult-focused research suggests that a vast majority of those referred to psychology are English speaking. Design/Methods: The medical records of Pediatric patients who died from cancer or its complications over a consecutive 18 month-period were examined via retrospective chart review. Patients' demographic information was collected, along with information about whether their medical team requested a psychology consultation. Details about consultations and subsequent intervention were collected. Results: Eighty-nine charts were reviewed. Patients ranged from age 3 months to 25 years. Data indicated that non-English speaking families were referred to psychology at nearly half the rate of English-speaking families (i.e., 16% of patients as compared to 31% of patients). There did not appear to be any statistically significant differences between the referred and non-referred groups aside from the family's primary language. There was a wide range of when patients were referred (4-3168 days before death). Conclusions: Results indicate that, though the comprehensive biological-psychological-social care of children is widely recognized as important, there is a clear disparity in the services offered to families that speak languages other than English. Further research should be conducted to understand referral barriers and missed opportunities to utilize Pediatric psychology, particularly as hospitals in the United States continue to diversify. Finally, offering providers education about how to identify common psychological concerns, particularly in those hailing from different cultural backgrounds, may be particularly valuable in closing the identified referral gap; our poster will make culturally-informed recommendations for such a training.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Adult
biological product
Cancer Patient
Child
Child Psychology
Complication
conference abstract
Controlled Study
Death
December 2018 List
Education
Female
Human
Karfunkle B
Language
Male
Malignant Neoplasm
Medical Record Review
Palliative Therapy
Patient Referral
Pediatric Blood and Cancer
pediatric patient
Retrospective Study
Schneider N
Social Care
Speech
Steinberg D
United States
-
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
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.0000537863.07170.4e" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537863.07170.4e</a>
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Improving communication within multi-disciplinary teams in children with life limiting conditions
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
Multidisciplinary team;Child;conference abstract;constitutive androstane receptor;death;endogenous compound;Human;intensivist;nurse;Palliative therapy;patient referral
Creator
An entity primarily responsible for making the resource
Subramanian G;Consterdine K;Kauffmann L
Description
An account of the resource
Aims & Objectives: 60% of children admitted to RMCH PICU might benefit from palliative care (previous case review). Co-coordinating and maintaining continuity of care in these children with multi-speciality input is challenging. Weekly Multi disciplinary Team Meeting (MDT) and follow up was introduced in PICU to improve care in this cohort. Methods Weekly MDT meeting (co-located specialist teams, Intensivists, palliative care consultant, family liaison nurses) were held over a year. Spectrum of Palliative Care Needs was used to 1. Recognise children who might benefit from palliative care 2. Identify need for MDT/Lead consultant/End of life discussions if not already done 3. Update community and specialist teams 4. Discuss/Review advanced care plan (ACP). Results Actions from 32 MDTs were analysed (minimum 2 meetings monthly) in children with palliative care needs (62%). Actions that had to take place within the hospital were completed: Liaising with specialist nurses: 7; Initiating ACP: 4; Identifying ICU lead: 16; Recognising need for end of life discussions, planning for death and place of death: 14; referral to in-house palliative care team: 17; Organising MDT: 11. However only 44% of local teams (outside hospital) were contacted (action that involved teams outside the hospital) and feedback from local teams after discharge was inconsistent. Conclusions Weekly MDT meetings to identify children who might benefit from palliative care are a good start to improving communication and maintaining continuity of care. More initiatives need to be taken by the intensivists in speciality hospitals to improve communication with the wider network of professionals looking after children with life limiting conditions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.pcc.0000537863.07170.4e" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537863.07170.4e</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
Child
conference abstract
Consterdine K
constitutive androstane receptor
Death
Endogenous Compound
Human
Intensivist
Kauffmann L
Multidisciplinary team
November 2018 List
Nurse
Palliative Therapy
Patient Referral
Pediatric Critical Care Medicine
Subramanian G
-
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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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
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Title
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August 2018 List
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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).
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
-
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/10.1136/archdischild-2018-rcpch.421" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2018-rcpch.421</a>
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Title
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Development of symptom assessment service at a children's hospice
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
2018
Subject
The topic of the resource
hospice; symptom assessment; central nervous system; child; clinical article; conference abstract; disability; female; health care personnel; human; male; medical assessment; medical record review; molecular recognition; nursing; patient referral; retrospective study; staff; telephone
Creator
An entity primarily responsible for making the resource
Balfe JM; Cassidy M; Booth A
Description
An account of the resource
Background and aims High symptom burden has been recognised in children with life-limiting conditions (LLC) and symptom assessment and management is a core component of children's palliative care (CPC). A previous audit highlighted a high prevalence of problematic symptoms in children accessing the hospice service prompting the development a symptom management team led by a paedi-atric consultant and CNS in CPC in spring 2016. All children in the earlier audited were in ACT category 3 and 4 and had diagnoses of severe disability with associated complex medical needs. This report aims to describe the development of the service and provide data from the first year's activity. Methods A record of all referrals to the team has been main-tained since its inception. A retrospective chart review was performed and data was collected and recorded on an excel spreadsheet. Data recorded included description of problematic symptoms, team members involved and intervention required. Results Referrals to the team are accepted from nursing and healthcare staff involved in the care of the child. A care pathway, symptom assessment tools and symptoms management plans have been developed. To date 39 children have received support from the team, 7 of the children have died since referral. The CNS, wider nursing and multi-disciplinary team have supported all children referred. Medical assessment has been provided to 30 children. 25 children were offered a short break in the hospice to allow careful evaluation of symptoms using formal symptom assessment tools. All children were provided with a symptom management plan and on-going support, at home, in the hospice or by telephone, individualised according to identified need. Parental and healthcare professional feedback has been positive. Conclusion This report describes the initial establishment of a symptom assessment service in a children's hospice. The service has been developed in recognition of the high burden of problematic symptoms in children with severe disability and complex medical needs. It is anticipated that the service will continue to develop to meet the increasing needs of children with LLCs.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2018-rcpch.421" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-rcpch.421</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
Archives of Disease in Childhood
Balfe JM
Booth A
Cassidy M
Central Nervous System
Child
Clinical Article
conference abstract
Disability
Female
Health Care Personnel
Hospice
Human
June 2018 List
Male
medical assessment
Medical Record Review
molecular recognition
Nursing
Patient Referral
Retrospective Study
Staff
Symptom Assessment
Telephone
-
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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March 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
March 2018 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
What do transplant physicians think about palliative care? A national survey study
Publisher
An entity responsible for making the resource available
Blood
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
medical oncologist; palliative therapy; Adult; bone marrow; Caregiver; Child; conference abstract; Female; friend; graft recipient; graft versus host reaction; hematologic disease; Hematopoietic stem cell transplantation; Hispanic; hospice; Human; human tissue; Male; outpatient care; patient referral; Perception; Questionnaire; Trust; United States
Creator
An entity primarily responsible for making the resource
El-Jawahri A; LeBlanc TW; Burns LJ; Denzen E; Meyer CL; Mau LW; Roeland EJ; Wood WA; Petersdorf E
Description
An account of the resource
Background: Palliative care (PC) has been shown to improve quality of life, symptom burden, and mood in patients with advanced solid tumors as well as those with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT). Despite these improvements in patientcentered outcomes, PC is under-utilized in the care of patients undergoing HSCT. We hypothesized that this may in part be due to transplant physicians' perceptions and attitudes about PC, which have not been fully elucidated. Methods: We conducted a cross-sectional, web-based survey of transplant physicians who care for patients with hematologic diseases in January-February 2017. Participants were recruited from the American Society for Blood and Marrow Transplantation (ASBMT) membership list. Using a 28-item questionnaire adapted from prior studies of medical oncologists, we examined transplant physicians' 1) access to PC services; 2) perceptions and attitudes about PC; and 3) perceptions of the unmet PC needs of HSCT patients and their caregivers. Results: Of 1005 eligible physicians, 277 transplant physicians completed the questionnaire yielding a response rate of 28%. The majority were white (194/277, 70%), not Hispanic or Latino (194/277, 70%), and male (179/277, 65%). All regions in the United States were represented. Most physicians (179/277, 65%) provided care to adult patients, with 28% (77/277) to pediatric patients and 8% (21/277) to both groups. The majority (159/277, 57%) provided care to both non-HSCT and HSCT patients, with 43% (118/277) to HSCT patients only. Overall, 36% (101/277) had < 10 years of practice, 29% (80/277) had 10-20 years, and 35% (96/277) had > 20 years in practice. Physicians collaborated with PC services more often for inpatient (121/277, 44%) than outpatient care (57/277, 21%). The quality of inpatient and outpatient PC services were considered excellent by 45% (124/77) and 30% (82/277) of physicians, respectively. Only 14% (39/277) reported collaborating often with home hospice services. Most physicians (233/277, 84%) felt that they should coordinate the care of their patients across all stages of disease including at the end of life (EOL). The majority (210/277, 76%) stated that they trust PC clinicians to care for their patients, but 40% (110/277) agreed that PC clinicians do not have enough understanding to counsel their HSCT patients regarding their treatment. Most expressed concerns about how patients perceive PC [Figure 1 and Figure 2]. For example, 82% (227/277) of physicians reported that when patients hear the term PC, they feel scared. In addition, 65% (180/277) reported that if a PC referral is suggested, patients might think nothing more can be done for their disease. The majority of transplant physicians reported that the service name 'palliative care' is a barrier to PC utilization [Figure 3]. However, most physicians recognized substantial unmet PC needs in their population including 1) physical symptoms (56%); 2) graft-versus-host disease symptoms (51%), 3) emotional and psychological needs (71%); 4) spiritual needs (63%); 5) preparing for future medical care (65%); and 6) supporting family and friends (69%). Conclusions: Despite reporting immense PC needs for HSCT patients, transplant physicians have a strong sense of commitment to address these needs. While the majority of respondents reported trusting PC, they also expressed substantial concerns about PC clinicians' knowledge about HSCT. In addition, most transplant physicians were concerned about patients' perception of the term 'palliative care'. Interventions are needed to promote collaboration, improve perceptions, and enhance integration of PC for transplant recipients. (Figure Presented).
2017
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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
Adult
Blood
bone marrow
Burns LJ
Caregiver
Child
conference abstract
Denzen E
El-Jawahri A
Female
friend
Graft Recipient
graft versus host reaction
hematologic disease
Hematopoietic stem cell transplantation
Hispanic
Hospice
Human
Human Tissue
LeBlanc TW
Male
March 2018 List
Mau LW
medical oncologist
Meyer CL
outpatient care
Palliative Therapy
Patient Referral
Perception
Petersdorf E
Questionnaire
Roeland EJ
Trust
United States
Wood WA
-
Dublin Core
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Title
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February 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
February 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2016.03.017" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2016.03.017</a>
Dublin Core
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Title
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Emerging Collaboration Between Palliative Care Specialists and Mechanical Circulatory Support Teams: A Qualitative Study
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
2016
Subject
The topic of the resource
assisted circulation; medical specialist; palliative therapy; Adult; advance care planning; Article; Child; Clinical Article; decision making; Family; Heart-Assist Devices; heart failure; hospice care; Human; Medicaid; Medicare; Palliative Care; patient referral; Perception; Qualitative Research; Self-Help Devices; semi structured interview; telephone interview; ventricular assist device
Creator
An entity primarily responsible for making the resource
Sagin A; Kirkpatrick JN; Pisani BA; Fahlberg BB; Sundlof AL; O'Connor NR
Description
An account of the resource
Context Despite national requirements mandating collaboration between palliative care specialists and mechanical circulatory support (MCS) teams at institutions that place destination therapy ventricular assist devices, little is known about the nature of those collaborations or outcomes for patients and families. Objectives To assess how Centers for Medicare & Medicaid Services' regulations have changed collaboration between palliative care and MCS teams and how this collaboration is perceived by MCS team members. Methods After obtaining verbal consent, members of MCS teams were interviewed using semistructured telephone interviews. Interviews were transcribed, and content was coded and analyzed using qualitative methods. Results Models for collaboration varied widely between institutions. Several expected themes emerged from interviews: 1) improvements over time in the relationship between palliative care specialists and MCS teams, 2) palliative care specialists as facilitators of advance care planning, and 3) referral to hospice and ventricular assist device deactivation as specific areas for collaboration. Several unexpected themes also emerged: 4) the emergence of dedicated heart failure palliative care teams, 5) palliative care specialists as impartial voices in decision making, 6) palliative care specialists as extra support for MCS team members, and 7) the perception of improved patient and family experiences with palliative care team exposure. Conclusion Although the structure of collaboration varies between institutions, collaboration between MCS teams and palliative care specialists is increasing and often preceded the Centers for Medicare & Medicaid Services requirement. Overall impressions of palliative care specialists are highly positive, with perceptions of improved patient and family experience and decreased burden on MCS team members.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2016.03.017" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.03.017</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).
2016
Adult
Advance Care Planning
Article
assisted circulation
Child
Clinical Article
Decision Making
Fahlberg BB
Family
February 2018 List
Heart Failure
Heart-Assist Devices
Hospice Care
Human
Journal of Pain and Symptom Management
Kirkpatrick JN
Medicaid
Medical Specialist
Medicare
O'Connor NR
Palliative Care
Palliative Therapy
Patient Referral
Perception
Pisani BA
Qualitative Research
Sagin A
Self-Help Devices
Semi Structured Interview
Sundlof AL
telephone interview
ventricular assist device
-
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="http://doi.org/10.2174/1573396312666161230145417" target="_blank" rel="noreferrer">http://doi.org/10.2174/1573396312666161230145417</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
Improving cancer care for children in the developing world: Challenges and strategies
Publisher
An entity responsible for making the resource available
Current Pediatric Reviews
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;childhood Cancer; Accreditation; Antineoplastic Agent; Awareness; Cancer Diagnosis; Cancer Recurrence; Cancer Registry; Cancer Research; Cancer Survival; Cancer Therapy; Clinical Effectiveness; Clinical Trial (topic); Cost Effectiveness Analysis; Country Economic Status; Cultural Factor; Delayed Diagnosis; Diagnostic Error; Family Therapy; Health Care Availability; Health Care Cost; Health Care Personnel; Human; Job Change; Medical Education; Medical Technology; Palliative Therapy; Patient Abandonment; Patient Referral; Poverty; Priority Journal; Program Sustainability; Review; Sepsis; Stratification; Toxicity
Creator
An entity primarily responsible for making the resource
Al Lamki Z
Description
An account of the resource
Cancer is a global health problem particularly in developing countries where the burden of cancer is ever increasing and claiming the lives of about 100,000 children under the age of 15 years every year. Majority of these occur in the Low and Middle Income Countries (LMICs) where 90% of world children live. Contributing factors to this trend is the reduction of communicable diseases and emergence of new infections, improvement of nutrition and socio-economic conditions, industrialization and urbanization. However, due to its complexity, childhood cancer is given the least priority by the governments' funding. The weak health systems, poor and late access to diagnosis and care, fewer numbers of trained health care professionals and lack of cancer drugs are amongst the many challenges faced. A major challenge for the future is extending the work to reach the many children who die without access to cancer treatment and palliation. Given the inequalities in the survival rates of children with cancer there is therefore an urgent need to close the gap between developed and developing countries. Strategies at individual, institutional, country, regional and global levels must be implemented to improve cancer survival and its effects on human suffering. These strategies are able to strengthen the health systems, improve care and research, increase awareness and coordinate training of professionals thus meeting the challenges. Financial support should be an integral part of the strategy as the cost of drugs is often a substantial barrier to treatment of cancer in poor countries. However, in resource-limited settings without specialized services, much can still be done to support and offer curative and palliative treatment. As have been shown for several cancers, life can be extended with low-tech treatment protocols, which are effective at the same time, decrease sepsis and toxicity. The concept of twinning with privileged nations is paramount to the success of any national cancer program. International partnership offers the opportunity to provide expertise, advice, support and transfer technology from established pediatric oncology unit. Their mission is to build capacity for cancer treatment and research with a vision of developing network of dedicated advocates. The LMIC teams must locally drive projects and volunteers and funding organizations can help to make progress possible. This will require a tremendous effort on the part of both high and low-middle-income countries, if we are all to work together to achieve this goal.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.2174/1573396312666161230145417" target="_blank" rel="noreferrer">10.2174/1573396312666161230145417</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Accreditation
Al Lamki Z
Antineoplastic Agent
Awareness
Cancer Diagnosis
Cancer Recurrence
Cancer Registry
Cancer Research
Cancer Survival
Cancer Therapy
Child Care
Childhood Cancer
Clinical Effectiveness
Clinical Trial (topic)
Cost Effectiveness Analysis
Country Economic Status
Cultural Factor
Current Pediatric Reviews
Delayed Diagnosis
Diagnostic Error
Family Therapy
Health Care Availability
Health Care Cost
Health Care Personnel
Human
Job Change
Medical Education
Medical Technology
Palliative Therapy
Patient Abandonment
Patient Referral
Poverty
Priority Journal
Program Sustainability
Review
Sepsis
Stratification
Toxicity
-
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
A name given to the resource
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>
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
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