1
40
82
-
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
April 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.
Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1016/j.jclinepi.2024.111286" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jclinepi.2024.111286</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
PRECIOUS demonstrated satisfactory measurement properties for assessing the quality of care for children with serious illnesses
Publisher
An entity responsible for making the resource available
Journal of Clinical Epidemiology
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
child; adult; article; female; human; major clinical study; male; palliative therapy; hospitalization; follow up; adolescent; therapy; caregiver support; correlation coefficient; psychometry; Cronbach alpha coefficient; internal consistency; person centered care; convergent validity; exploratory factor analysis; root mean squared error; test retest reliability
Creator
An entity primarily responsible for making the resource
Ang FJL; Bun Cheung Y; Gandhi M; Ostbye T; Malhotra C; Malhotra R; Cristelle Chow CT; Heng Chong P; Amin Z; Teresa Tan SZ; Tewani K; Hanim Buang SN; Finkelstein EA
Description
An account of the resource
Objective: To determine the measurement properties of PRECIOUS, a parent-reported measure of Quality of Care (QoC) for seriously ill children across care settings and illness trajectories. Study design and setting: Parents self-administered baseline and two-week follow-up surveys online. Exploratory Factor Analysis (EFA) was used to determine PRECIOUS's factor structure and select items. Internal consistency was evaluated with Cronbach's α, test-retest reliability with intraclass correlation coefficients (ICCs), and convergent validity with Spearman's correlations between PRECIOUS scales and subscales of Measure of Processes of Care (MPOC-20) and Quality of Children's Palliative Care Instrument (QCPCI). Results: Of 152 parents [108 (71%) mothers, 44 (29%) fathers] who completed the baseline survey, 123 (81%) completed follow-up. EFA grouped PRECIOUS into 5 scales: Collaborative and goal-concordant care (12 items), Caregiver support and respectful care (15 items), Access to financial and medical resources (5 items), Reducing caregiving stressors (9 items), and Hospitalization-specific processes (4 items). Root Mean Square Error of Approximation was 0.040 and Comparative Fit Index was 0.980. Cronbach's α ranged from 0.85 to 0.96. ICCs ranged from 0.72 to 0.86. Significant correlations with MPOC-20 and QCPCI confirmed convergent validity. The original 56-item tool was reduced to 45-items. Conclusion: PRECIOUS demonstrates satisfactory measurement properties for assessing QoC for seriously ill children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jclinepi.2024.111286" target="_blank" rel="noreferrer noopener">10.1016/j.jclinepi.2024.111286</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).
2024
Adolescent
Adult
Amin Z
Ang FJL
April List 2024
Article
Bun Cheung Y
Caregiver Support
Child
convergent validity
correlation coefficient
Cristelle Chow CT
Cronbach alpha coefficient
exploratory factor analysis
Female
Finkelstein EA
Follow Up
Gandhi M
Hanim Buang SN
Heng Chong P
Hospitalization
Human
Internal Consistency
Journal Of Clinical Epidemiology
Major Clinical Study
Male
Malhotra C
Malhotra R
Ostbye T
Palliative Therapy
person centered care
psychometry
root mean squared error
Teresa Tan SZ
test retest reliability
Tewani K
Therapy
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.2174/0118715303278702231019093844" target="_blank" rel="noreferrer noopener"> http://doi.org/10.2174/0118715303278702231019093844</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
Palliative Care in Children with Inherited Metabolic Diseases: Why does it matter?
Publisher
An entity responsible for making the resource available
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
An entity primarily responsible for making the resource
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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.2174/0118715303278702231019093844" target="_blank" rel="noreferrer noopener">10.2174/0118715303278702231019093844</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
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
-
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 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.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.4274/jpea.2023.198" target="_blank" rel="noreferrer noopener"> http://doi.org/10.4274/jpea.2023.198</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
The Relationship Between Dyspnea Severity with Radiological and Laboratory Findings in Pneumonia in Children in Pediatric Palliative Care
Publisher
An entity responsible for making the resource available
Journal of Pediatric Academy
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; female; human; major clinical study; male; cerebral palsy; epilepsy; palliative therapy; hospitalization; respiratory distress; medical device; assisted ventilation; genetic disorder; social worker; scoring system; cross-sectional study; caregiver; pediatrician; physiotherapist; nurse; X ray; bronchopneumonia; nutritional support; dyspnea; laboratory diagnosis; pneumonia/di [Diagnosis]; radiodiagnosis; atrophy; bacterial pneumonia; bone development; breathing muscle; interstitial pneumonia; modified Borg dyspnea scale; thorax radiography; virus pneumonia
Creator
An entity primarily responsible for making the resource
Harputluoglu N; Coskun M; Cubukcu D; Celik T
Description
An account of the resource
In care patients; pneumonia is common due to being bedridden, atrophy of respiratory muscles and use of medical devices. Dyspnea is the second most common symptom after pain in pediatric palliative care. In this study, it was aimed to examine the relationship between the severity of dyspnea and pneumonia. The study is a study that included patients admitted to pediatric palliative care, diagnosed with pneumonia, and applied Modified Borg Scale (MBS) between December 15, 2019 and December 15, 2020. The MBS has a scoring system ranging from 0 to 10 and assesses the severity of dyspnea. A total of 72 (34.4%) patients diagnosed with pneumonia and underwent MBS were included in the study. 51.4% (n=37) of the study group were male, and the median age was 6.00 years (ranges of quarters=9). It was observed that the severity of dyspnea did not affect determining the pneumonia type and possible pathogen (p=0.613, p=0.948, respectively) In line with the results of the study, it can be concluded that there is no relationship between the severity of dyspnea and pneumonia in patients in need of care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.4274/jpea.2023.198" target="_blank" rel="noreferrer noopener">10.4274/jpea.2023.198</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
Article
assisted ventilation
Atrophy
bacterial pneumonia
bone development
breathing muscle
bronchopneumonia
Caregiver
Çelik T
Cerebral Palsy
Child
Coskun M
Cross-sectional Study
Cubukcu D
Dyspnea
Epilepsy
February List 2024
Female
Genetic Disorder
Harputluoglu N
Hospitalization
Human
interstitial pneumonia
Journal of Pediatric Academy
laboratory diagnosis
Major Clinical Study
Male
medical device
modified Borg dyspnea scale
Nurse
Nutritional Support
Palliative Therapy
Pediatrician
physiotherapist
pneumonia/di [Diagnosis]
radiodiagnosis
respiratory distress
scoring system
Social Worker
thorax radiography
virus pneumonia
X ray
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1080/07357907.2022.2141771" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07357907.2022.2141771</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
Real World Presentation and Treatment Outcomes with a Predominant Induction Chemotherapy Based Approach in Nasopharyngeal Carcinoma: A Sixteen Year Report from a Teaching Hospital in India
Publisher
An entity responsible for making the resource available
Cancer Investigation
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; adult; article; cohort analysis; female; human; major clinical study; male; retrospective study; aged; hospitalization; India; follow up; cancer recurrence; overall survival; adolescent; hearing impairment; diplopia; adjuvant therapy; smoking; multiple cycle treatment; overall response rate; progression free survival; thrombocytopenia; headache; diarrhea; histopathology; intensity modulated radiation therapy; anemia; vomiting; cancer staging; teaching hospital; palliative chemotherapy; carboplatin/cb [Drug Combination]; carboplatin/dt [Drug Therapy]; cisplatin/ae [Adverse Drug Reaction]; cisplatin/cb [Drug Combination]; cisplatin/dt [Drug Therapy]; gemcitabine/dt [Drug Therapy]; paclitaxel/cb [Drug Combination]; paclitaxel/dt [Drug Therapy]; treatment outcome; cyclophosphamide/cb [Drug Combination]; cyclophosphamide/dt [Drug Therapy]; mucosa inflammation; antiemetic agent; treatment interruption; date of death; survival prediction; neck dissection; hypothyroidism; induction chemotherapy; nasopharynx carcinoma/dt [Drug Therapy]; nasopharynx carcinoma/rt [Radiotherapy]; nasopharynx carcinoma/su [Surgery]; albumin/ec [Endogenous Compound]; bone metastasis; capecitabine/dt [Drug Therapy]; cervical lymph node; chemoradiotherapy; cisplatin/to [Drug Toxicity]; cobalt therapy; cranial nerve paralysis; distant metastasis; docetaxel/cb [Drug Combination]; docetaxel/dt [Drug Therapy]; dysphasia; epirubicin/cb [Drug Combination]; epirubicin/dt [Drug Therapy]; exophthalmos; febrile neutropenia; fluorouracil/cb [Drug Combination]; fluorouracil/dt [Drug Therapy]; liver metastasis; lung metastasis; neck swelling; neutropenia; nose obstruction; peripheral neuropathy; primary tumor/rt [Radiotherapy]; radiotherapy dosage; salvage therapy; spinal cord; toxicity/si [Side Effect]; trismus; xerostomia
Creator
An entity primarily responsible for making the resource
Gogi R; Sharma A; Mohanti BK; Pramanik R; Bhasker S; Biswas A; Thakar A; Singh AC; Sikka K; Kumar R; Thulkar S; Bahadur S
Description
An account of the resource
Introduction: Nasopharyngeal carcinoma (NPC) is a rare malignancy in India except in north-eastern states. We present our institutional experience of 16 years highlighting management, outcomes, responses and toxicities. Material(s) and Method(s): NPC patients registered at our center during the period of 2000-2015. The primary objective of the study was to assess the overall survival (OS). Secondary outcome included determinations of response rates, progression free survival (PFS) and to assess treatment-related toxicity (CTCAE v4.0). Institute ethics committee approval was obtained prior to initiation of this study. Result(s): Data was retrieved from complete records of 222 patients out of 390 registered during study period. There were 163 males (73.4%) and 59 females (26.6%) with a male to female ratio of 2.8:1. The median age was 35 years (range 6-73). Only 5.6% (n = 12) presented in early-stage disease (stage I and II) while 89.6% (n = 199) were advanced stage (stage III, IVA, IVB). Five patients (2.2%) presented as metastatic disease. Majority of patients were treated with induction chemotherapy followed by concurrent chemoradiation (CCRT) {76.1%, n = 169}. Relapses were documented in 10.4% patients. 5% patients had loco-regional relapse while distant metastases were seen in 4% patients. The 3-year PFS and OS rates are 60.9% and 68.4%, respectively. Achieving a CR predicted superior OS on multivariate analysis. Conclusion(s): NPC is a rare malignancy and majority presented with advanced stages. This data outlines our experience and outcomes with a predominantly induction chemotherapy followed by definitive CCRT based approach.Copyright © 2022 Taylor & Francis Group, LLC.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/07357907.2022.2141771" target="_blank" rel="noreferrer noopener">10.1080/07357907.2022.2141771</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
2023 SE5 - Low Resource Setting
adjuvant therapy
Adolescent
Adult
Aged
albumin/ec [Endogenous Compound]
Anemia
antiemetic agent
Article
Bahadur S
Bhasker S
Biswas A
bone metastasis
Cancer Investigation
Cancer Recurrence
Cancer Staging
capecitabine/dt [Drug Therapy]
carboplatin/cb [Drug Combination]
carboplatin/dt [Drug Therapy]
cervical lymph node
chemoradiotherapy
Child
cisplatin/ae [Adverse Drug Reaction]
cisplatin/cb [Drug Combination]
cisplatin/dt [Drug Therapy]
cisplatin/to [Drug Toxicity]
cobalt therapy
Cohort Analysis
cranial nerve paralysis
cyclophosphamide/cb [Drug Combination]
cyclophosphamide/dt [Drug Therapy]
date of death
Diarrhea
diplopia
distant metastasis
docetaxel/cb [Drug Combination]
docetaxel/dt [Drug Therapy]
dysphasia
epirubicin/cb [Drug Combination]
epirubicin/dt [Drug Therapy]
exophthalmos
febrile neutropenia
Female
fluorouracil/cb [Drug Combination]
fluorouracil/dt [Drug Therapy]
Follow Up
gemcitabine/dt [Drug Therapy]
Gogi R
Headache
hearing impairment
Histopathology
Hospitalization
Human
hypothyroidism
India
induction chemotherapy
Intensity Modulated Radiation Therapy
Kumar R
liver metastasis
lung metastasis
Major Clinical Study
Male
Mohanti BK
mucosa inflammation
multiple cycle treatment
nasopharynx carcinoma/dt [Drug Therapy]
nasopharynx carcinoma/rt [Radiotherapy]
nasopharynx carcinoma/su [Surgery]
neck dissection
neck swelling
Neutropenia
nose obstruction
overall response rate
Overall Survival
paclitaxel/cb [Drug Combination]
paclitaxel/dt [Drug Therapy]
palliative chemotherapy
peripheral neuropathy
Pramanik R
primary tumor/rt [Radiotherapy]
progression free survival
Radiotherapy Dosage
Retrospective Study
Salvage Therapy
Sharma A
Sikka K
Singh AC
Smoking
Spinal cord
survival prediction
teaching hospital
Thakar A
thrombocytopenia
Thulkar S
toxicity/si [Side Effect]
treatment interruption
Treatment Outcome
trismus
Vomiting
xerostomia
-
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
2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1080/24694193.2022.2085821" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/24694193.2022.2085821</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
The Cry to Be Involved: Experiences of Caregivers on Participation in Decision Making and Care Provision at Mercy James PICU in Blantyre, Malawi
Publisher
An entity responsible for making the resource available
Comprehensive Child and Adolescent Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; Female; Male; Decision Making; Intensive Care Units Pediatric; Qualitative Research; Hospitalization; Crying; Malawi; Caregivers
Creator
An entity primarily responsible for making the resource
Chasweka G; Majamanda MD; Namathanga A
Description
An account of the resource
A child's illness and admission in a hospital are stressful and can negatively affect the child and his/her caregivers. The stress is further exacerbated when a child is critically ill and has been admitted to an intensive care unit (ICU). The effects can be reduced when caregivers of the sick children are present and involved in decision making and actual care of their hospitalized children, a care model called family-centered care. Malawi has adopted family-centered care model in the newly instituted Mercy James Pediatric ICU. Little is known about experiences of caregivers with FCC in Malawi. This qualitative study was therefore conducted to explore experiences of caregivers on their involvement in decision making and care at Mercy James Pediatric ICU in Blantyre, Malawi. This was a descriptive qualitative study with a sample size of fifteen participants, however, data saturation was reached with ten participants. One on one in-depth interviews were conducted among a purposively selected sample of ten caregivers whose children had been discharged from the PICU. Content analysis was deductively and manually undertaken to analyze data with the aid of delve software to organize the data. Findings show that not every caregiver was involved in the decision making of their children's care, and if they did, it was not adequate. Barriers to effective involvement such as using a foreign language had a negative impact on comprehensive involvement of caregivers in decision making for their children's care. All participants were, however, involved in the physical care of their children. It is important that health care workers should continuously encourage caregivers to get involved in the decision making and care of their children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/24694193.2022.2085821" target="_blank" rel="noreferrer noopener">10.1080/24694193.2022.2085821</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
2023 SE5 - Low Resource Setting
Caregivers
Chasweka G
Child
Comprehensive Child and Adolescent Nursing
Crying
Decision Making
Female
Hospitalization
Humans
Intensive Care Units Pediatric
Majamanda MD
Malawi
Male
Namathanga A
Qualitative Research
-
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
2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1136/bmjopen-2022-066620" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjopen-2022-066620</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
Doctors' experiences of referring and admitting patients to the intensive care unit: a qualitative study of doctors' practices at two tertiary hospitals in Malawi
Publisher
An entity responsible for making the resource available
BMJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Critical Care; Tertiary Care Centers; Intensive Care Units; Intensive Care Units; Hospitalization; Malawi; Paediatric intensive & critical care; Adult intensive & critical care; Quality in health care
Creator
An entity primarily responsible for making the resource
Gundo R; Kayambankadzanja RK; Chipeta D; Gundo B; Chikumbanje SS; Baker T
Description
An account of the resource
OBJECTIVE: To explore doctors' experiences of referring and admitting patients to the intensive care unit (ICU) at two tertiary hospitals in Malawi. DESIGN: This was a qualitative study that used face-to-face interviews. The interviews were audiotaped and transcribed verbatim into English. The data were analysed manually through conventional content analysis. SETTING: Two public tertiary hospitals in the central and southern regions of Malawi. Interviews were conducted from January to June 2021. PARTICIPANTS: Sixteen doctors who were involved in the referral and admission of patients to the ICU. RESULTS: Four themes were identified namely, lack of clear admission criteria, ICU admission requires a complex chain of consultations, shortage of ICU resources, and lack of an ethical and legal framework for discontinuing treatment of critically ill patients who were too sick to benefit from ICU. CONCLUSION: Despite the acute disease burden and increased demand for ICU care, the two hospitals lack clear processes for referring and admitting patients to the ICU. Given the limited bed space in ICUs, hospitals in low-income countries, including Malawi, need to improve or develop admission criteria, severity scoring systems, ongoing professional development activities, and legislation for discontinuing intensive care treatments and end-of-life care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjopen-2022-066620" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2022-066620</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
2023 SE5 - Low Resource Setting
Adult intensive & critical care
Baker T
Bmj Open
Chikumbanje SS
Chipeta D
Critical Care
Gundo B
Gundo R
Hospitalization
Humans
Intensive Care Units
Kayambankadzanja RK
Malawi
Paediatric intensive & critical care
Quality In Health Care
Tertiary Care Centers
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
June 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="https://www.cmajopen.ca/content/11/2/E298">https://www.cmajopen.ca/content/11/2/E298</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
Location of death among children with life-threatening conditions: a national population-based observational study using the Canadian Vital Statistics Database (2008-2014)
Publisher
An entity responsible for making the resource available
CMAJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; Retrospective Studies; Infant Newborn; Hospital Mortality; Ontario; Palliative Care; Hospitalization; Only Child
Creator
An entity primarily responsible for making the resource
Widger K; Brennenstuhl S; Tanuseputro P; Nelson KE; Rapoport A; Seow H; Siden H; Vadeboncoeur C; Gupta S
Description
An account of the resource
BACKGROUND: Patterns in location of death among children with life-threatening conditions (e.g., cancer, genetic disorders, neurologic conditions) may reveal important inequities in access to hospital and community support services. We aimed to identify demographic, socioeconomic and geographic factors associated with variations in location of death for children across Canada with life-threatening conditions. METHODS: We used a retrospective observational cohort design and the Canadian Vital Statistics Database to identify children aged 19 years or younger who died from a life-threatening condition between Jan. 1, 2008, and Dec. 31, 2014. We used multivariable logistic regression to determine predictors of in-hospital death for children aged 1 month to 19 years, and for neonates younger than 1 month. RESULTS: Overall, 13 115 decedents younger than 19 years had life-threatening conditions. Of 5250 children and 7865 neonates, 74.2% and 98.1%, respectively, died in hospital. Among children, we found a higher proportion of hospital deaths in the lowest (v. highest) income quintile (odds ratio [OR] 1.59, 95% confidence interval [CI] 1.28-1.97), and a lower proportion among children living more than 400 km (v. < 50 km) from a pediatric hospital (OR 0.73, 95% CI 0.65-0.86). Compared with Ontario, hospital death was most common in Quebec (OR 1.38, 95% CI 1.14-1.67) and least common in British Columbia (OR 0.43, 95% CI 0.34-0.53). Compared with an oncologic cause of death, all causes except neurologic and metabolic conditions had significantly higher odds of dying in hospital. INTERPRETATION: In addition to demographics, we identified socioeconomic and geographic differences in location of death, suggesting potential inequities in access to high-quality care at the end of life. Health care policies and practices must ensure equitable access to services for children across Canada, particularly at the end of their life.
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).
Identifier
An unambiguous reference to the resource within a given context
<a href="https://www.cmajopen.ca/content/11/2/E298">10.9778/cmajo.20220070</a>
2023
Brennenstuhl S
Child
Cmaj Open
Gupta S
Hospital Mortality
Hospitalization
Humans
Infant Newborn
June 2022 List
Nelson KE
Only Child
Ontario
Palliative Care
Rapoport A
Retrospective Studies
Seow H
Siden H
Tanuseputro P
Vadeboncoeur C
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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/10.1002/nur.22261" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/nur.22261</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
Uncertainty and Perinatal Post?Traumatic Stress Disorder in the Neonatal Intensive Care Unit
Publisher
An entity responsible for making the resource available
Research in Nursing and Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Male; Female; Infant; Palliative Care; Parents; Infant Newborn; Questionnaires; Prospective Studies; Intensive Care Units Neonatal; Hospitalization; Mental Disorders; Intensive Care Units; Patient Discharge; Data Analysis Software; Human; Descriptive Statistics; Stress Disorders Post-Traumatic; Perinatal Care; Uncertainty; Scales; Psychosocial Factors; Comparative Studies; Coefficient Alpha; Summated Rating Scaling; After Care; Hypothesis; Parent-Infant Relations; Psychologists; Reliability and Validity
Creator
An entity primarily responsible for making the resource
Malin KJ; Johnson TS; Brown RL; Leuthner J; Malnory M; White?Traut R; Rholl E; Lagatta J
Description
An account of the resource
Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post?traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of uncertainty about illness have been theorized as an antecedent to post?traumatic stress, however the relationship has not been explored in parents of infants requiring care in the NICU. The purpose of this prospective study was to explore parental uncertainty during and after NICU discharge and the relationship between uncertainty and PPTSD. The sample consisted of 319 parents during NICU hospitalization and 245 parents at 3 months postdischarge. Parents who screened positive for PPTSD 3 months after hospital discharge reported more uncertainty both while in the NICU and 3 months after hospital discharge (p < 0.001). In parents with a personal or family history of mental illness, the moderated/mediating structural probit analysis showed no direct or indirect effect of uncertainty during hospitalization or at 3 months after hospital discharge on screening positive for PPTSD. In parents who did not report personal or family history of mental illness, uncertainty at 3 months after hospital discharge had a direct effect (b = 0.678, p < 0.001) and indirect mediating effect (b = 0.276, p < 0.001) on screening positive for PPTSD. The results provide actionable implications for mental health and NICU providers: (1) routine screening for uncertainty and risk factors including previous personal and family history of mental illness, and (2) the development of NICU follow?up support services to mitigate risk for PPTSD.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/nur.22261" target="_blank" rel="noreferrer noopener">10.1002/nur.22261</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).
2022
After Care
April List 2023
Brown RL
Coefficient Alpha
Comparative Studies
Data Analysis Software
Descriptive Statistics
Female
Hospitalization
Human
Hypothesis
Infant
Infant Newborn
Intensive Care Units
Intensive Care Units Neonatal
Johnson TS
Lagatta J
Leuthner J
Male
Malin KJ
Malnory M
Mental Disorders
Palliative Care
Parent-Infant Relations
Parents
Patient Discharge
Perinatal Care
Prospective Studies
Psychologists
Psychosocial Factors
Questionnaires
reliability and validity
Research in Nursing and Health
Rholl E
scales
Stress Disorders Post-Traumatic
Summated Rating Scaling
Uncertainty
White?Traut 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
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>
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
Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease
Publisher
An entity responsible for making the resource available
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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1055/s-0041-1730916" target="_blank" rel="noreferrer noopener">10.1055/s-0041-1730916</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
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
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/10.12956/tchd.933708" target="_blank" rel="noreferrer noopener"> http://doi.org/10.12956/tchd.933708</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
Social Workers in Pediatric Intensive Care Units: A Physician Perspective
Publisher
An entity responsible for making the resource available
Turkish Journal of Pediatric Disease
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
child; article; female; human; male; retrospective study; Intensive Care Units; palliative therapy; pediatric intensive care unit; follow up; consultation; hospitalization; adolescent; infant; social problem; social worker; counseling; physician; Social Work; child psychiatry; abuse; Turkey (republic); child custody; child neglect; community mental health center; hospital information system
Creator
An entity primarily responsible for making the resource
Atakul G; Aslan K; Demircan TO; Ozhan P; Caglar A
Description
An account of the resource
Objective: The role of social workers, who are beginning to be integrated into the entire health system, is now becoming more and more understood. In our study, we aimed to discuss the duties of social workers at PICU, the results of their work in harmony with the physicians, and their importance for the intensive care team. Material(s) and Method(s): Sixtysix children aged between 1 month and 18 years old who were asked for social service consultation between January 2019 and December 2020 at our hospital's PICU were included in the study. The age, diagnosis, sex, marital status (married-divorced), number of days of hospitalization, number of recurrent hospitalization, reason and result of consultation, necessity of psychiatric consultation and frequency of follow-up were retrospectively examined and recorded through the hospital information system. The collected data were analyzed by means of SPSS (version 22.0, SPSS Inc. Chicago, IL, USA). Result(s): The median age (months) (min-max) was found to be 172, 50 (6-209), and the median (min-max) duration of hospitalization (days) was found to be 2 (1-76). Family neglect was found to be the most common cause of social work indications (77.3%; n: 51). The number of patients who were given social counseling and referred to a psychiatrist was 25 (37.9%). Family neglect and abuse were detected in 5 (7.6%) patients. Apart from these, it was observed that problems such as drug supply, financial support, ID application, home device supply assistance, care center approvals and child custody were solved in each 1 (1.5%) patient. Conclusion(s): The inclusion of social workers in the children's intensive care unit teams can also prevent many social problems that can be neglected otherwise. Physicians are more focused on patient treatment, so we believe that it will be beneficial to question the family and social status of patients together with a social service unit and specialists integrated into children's intensive care units.Copyright © 2022 Ankara Pediatric Hematology Oncology Training and Research Hospital. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12956/tchd.933708" target="_blank" rel="noreferrer noopener">10.12956/tchd.933708</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).
2022
abuse
Adolescent
April List 2023
Article
Aslan K
Atakul G
Caglar A
Child
child custody
child neglect
Child Psychiatry
community mental health center
Consultation
Counseling
Demircan TO
Female
Follow Up
hospital information system
Hospitalization
Human
Infant
Intensive Care Units
Male
Ozhan P
Palliative Therapy
Pediatric Intensive Care Unit
Physician
Retrospective Study
social problem
Social Work
Social Worker
Turkey (republic)
Turkish Journal of Pediatric 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
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1186/s12887-022-03632-4" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12887-022-03632-4</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
Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability
Publisher
An entity responsible for making the resource available
BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Adolescent; Child; Child, Preschool; Children; Clinical pathway; Emergency Service, Hospital; Hospitalization; Hospitals, Pediatric; Humans; Infant; Infant, Newborn; Pain; Retrospective Studies; Severe neurological impairment; PIUO
Creator
An entity primarily responsible for making the resource
Fishman I; Siden H; Vadeboncoeur C
Description
An account of the resource
BACKGROUND: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition, communication, and motor skills are impaired and other organ systems are impacted. Pain is difficult to identify and treat in children with SNI because of communication impairment. When a clear cause of pain is not determined, the term "Pain and Irritability of Unknown Origin (PIUO)" is used to describe pain-like behaviours. This study explores the clinical care received by children with SNI admitted to hospital after presenting to the emergency department of a tertiary pediatric hospital with pain or irritability. Findings are compared to the approach suggested in the PIUO pathway, an integrated clinical pathway for identifying and treating underlying causes of pain and irritability in children with complex conditions and limited communication. METHODS: Retrospective chart review of children (age 0 to 18 years inclusive) with diagnoses compatible with SNI presenting with pain, irritability, and/or unexplained crying that required hospitalization between January 1st, 2019 and December 31st, 2019. Descriptive statistics were used to analyze the clinical care received by children in whom a source of pain was identified or not. In children for whom no cause of pain was identified, investigations completed were compared to the PIUO pathway. RESULTS: Eight hospital admissions of six unique children were included for data analysis. A cause for pain and irritability was identified and resolved in three patients. In children with PIUO, there were gaps in history taking, physical examination, and investigations that might have allowed a cause of pain and irritability to be found. Pain was assessed using the r-FLACC pain scale and varying medications for pain/irritability were given during each hospital admission. CONCLUSION: Children with SNI admitted to a tertiary pediatric hospital did not undergo a standardized approach to identifying a cause of pain and irritability. Future efforts should explore the effectiveness of the PIUO pathway, a standardized approach to reducing and resolving pain in children with SNI.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12887-022-03632-4" target="_blank" rel="noreferrer noopener">10.1186/s12887-022-03632-4</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).
2022
Adolescent
Bmc Pediatrics
Child
Child, Preschool
Children
Clinical pathway
Emergency Service, Hospital
Fishman I
Hospitalization
Hospitals, Pediatric
Humans
Infant
Infant, Newborn
Pain
PIUO
Retrospective Studies
severe neurological impairment
Siden H
Vadeboncoeur C
-
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
2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1186/s12939-020-01252-x" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12939-020-01252-x</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
Vulnerability and Agency across Treatment-Seeking Journeys for Acutely Ill Children: How Family Members Navigate Complex Healthcare Before, During and After Hospitalisation in A Rural Kenyan Setting
Publisher
An entity responsible for making the resource available
International Journal for Equity in Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Adult; Child Preschool; Cohort Studies; Female; Humans; Infant; Male; Qualitative Research; Prospective Studies; Family; Continuity of Patient Care; Hospitalization; Child Mortality; Social Support; Acute Disease; Caregivers; Health Facilities; Family Characteristics; Vulnerable Populations; Rural Population; Kenya/epidemiology; Agency; Child Health; Childhood acute illness; Delivery of Health Care/standards; Treatment-seeking; Vulnerability
Creator
An entity primarily responsible for making the resource
Zakayo SM; Njeru RW; Sanga G; Kimani MN; Charo A; Muraya K; Sarma H; Uddin MF; Berkley JA; Walson JL; Kelley M; Marsh V; Molyneux S
Description
An account of the resource
BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations and ability to make choices and act (their agency). We examined vulnerability and agency across treatment-seeking journeys for acutely ill children and considered the implications for policy and practice. METHOD: A qualitative sub-study was embedded within the prospective CHAIN Network cohort study, which is investigating mechanisms of inpatient and post-hospital discharge mortality among acutely ill young children across a spectrum of nutritional status. Primary data were collected from household members of 20 purposively selected cohort children over 18 months through formal interviews (total n = 74), complemented by informal discussions and observations. Data were analysed using narrative and thematic approaches. RESULTS: Treatment-seeking pathways were often long and complex, particularly for children diagnosed as severely malnourished. Family members' stories reveal that children's carers, usually mothers, navigate diverse challenges related to intersecting vulnerabilities at individual, household and facility levels. Specific challenges include the costs of treatment-seeking, confusing and conflicting messaging on appropriate care and nutrition, and poor continuity of care. Strong power inequities were observed between family members and health staff, with many mothers feeling blamed for their child's condition. Caregivers' agency, as demonstrated in decision-making and actions, often drew on the social support of others but was significantly constrained by their situation and broader structural drivers. CONCLUSION: To support children's care and recovery, health systems must be more responsive to the needs of families facing multiple and interacting vulnerabilities. Reducing incurred treatment costs, improving interpersonal quality of care, and strengthening continuity of care across facilities is essential. Promising interventions need to be co-designed with community representatives and health providers and carefully tested for unintended negative consequences and potential for sustainable scale-up.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12939-020-01252-x" target="_blank" rel="noreferrer noopener">10.1186/s12939-020-01252-x</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).
2020
2021 Special Edition 1 - Low Resource Settings
Acute Disease
Adult
agency
Berkley JA
Caregivers
Charo A
Child Health
Child Mortality
Child Preschool
Childhood acute illness
Cohort Studies
Continuity Of Patient Care
Delivery of Health Care/standards
Family
Family Characteristics
Female
Health Facilities
Hospitalization
Humans
Infant
International Journal for Equity in Health
Kelley M
Kenya/epidemiology
Kimani MN
Male
Marsh V
Molyneux S
Muraya K
Njeru RW
Prospective Studies
Qualitative Research
Rural Population
Sanga G
Sarma H
Social Support
Treatment-seeking
Uddin MF
VULNERABILITY
Vulnerable Populations
Walson JL
Zakayo SM
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
October 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2022 List
URL Address
<a href="http://doi.org/10.1542/hpeds.2021-006432">http://doi.org/10.1542/hpeds.2021-006432</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
Demographic and Clinical Differences Between Applied Definitions of Medical Complexity
Publisher
An entity responsible for making the resource available
Hospital Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Child; Chronic Disease; Cross-Sectional Studies; Demography; Hospitalization; Hospitals; Pediatric; Humans; Infant; Retrospective; Studies
Creator
An entity primarily responsible for making the resource
Heneghan JA; Goodman DM; Ramgopal S
Description
An account of the resource
OBJECTIVES: To identify the degree of concordance and characterize demographic and clinical differences between commonly used definitions of multisystem medical complexity in children hospitalized in children's hospitals. METHODS: We conducted a retrospective, cross-sectional cohort study of children <21 years of age hospitalized at 47 US Pediatric Health Information System-participating children's hospitals between January 2017 to December 2019. We classified patients as having multisystem complexity when using 3 definitions of medical complexity (pediatric complex chronic conditions, pediatric medical complexity algorithm, and pediatric chronic critical illness) and assessed their overlap. We compared demographic, clinical, outcome, cost characteristics, and longitudinal healthcare utilization for each grouping. RESULTS: Nearly one-fourth (23.5%) of children hospitalized at Pediatric Health Information System-participating institutions were identified as meeting at least 1 definition of multisystem complexity. Children with multisystem complexity ranged from 1.0% to 22.1% of hospitalized children, depending on the definition, with 31.2% to 95.9% requiring an ICU stay during their index admission. Differences were seen in demographic, clinical, and resource utilization patterns across the definitions. Definitions of multisystem complexity demonstrated poor agreement (Fleiss' κ 0.21), with 3.5% of identified children meeting all 3. CONCLUSIONS: Three definitions of multisystem complexity identified varied populations of children with complex medical needs, with poor overall agreement. Careful consideration is required when applying definitions of medical complexity in health services research, and their lack of concordance should result in caution in the interpretation of research using differing definitions of medical complexity.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/hpeds.2021-006432">10.1542/hpeds.2021-006432</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).
2022
Child
Chronic Disease
Cross-sectional Studies
Demography
Goodman DM
Heneghan JA
Hospital Pediatrics
Hospitalization
Hospitals
Humans
Infant
October 2022 List
Pediatric
Ramgopal S
Retrospective
Studies
-
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 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1177/27527530211059435" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/27527530211059435</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
Reiki Therapy for Very Young Hospitalized Children Receiving Palliative Care
Publisher
An entity responsible for making the resource available
Journal of Pediatric Hematology/Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Children; Hospitalization; Palliative care; Reiki
Creator
An entity primarily responsible for making the resource
Thrane SE; Williams E; Grossoehme DH; Friebert S
Description
An account of the resource
Background: Approximately half of children receiving palliative care are under age five; however, there are a few studies exploring palliative care interventions for this population. The purpose of this study was to evaluate the effects of Reiki on pain, stress, heart, and respiratory rates, oxygenation, and quality of life (QoL) in hospitalized young children receiving palliative care services.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/27527530211059435" target="_blank" rel="noreferrer noopener">10.1177/27527530211059435</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).
2022
August 2022 List
Children
Friebert S
Grossoehme DH
Hospitalization
Journal of Pediatric Hematology/Oncology Nursing
Palliative Care
Reiki
Thrane SE
Williams E
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
May 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2022 List
URL Address
<a href="http://doi.org/10.1542/hpeds.2021-006334" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/hpeds.2021-006334</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
Impact of COVID-19 on Admissions and Outcomes for Children With Complex Chronic Conditions
Publisher
An entity responsible for making the resource available
Hospital Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
COVID-19; Child; Chronic Disease; Cross-Sectional Studies; Hospitalization; Humans; Pandemics
Creator
An entity primarily responsible for making the resource
Markham JL; Richardson T; Teufel RJ; Hersh AL; DePorre A; Fleegler EW; Antiel RM; Williams DC; Hotz A; Wilder JL; Shah SS
Description
An account of the resource
BACKGROUND: Although pediatric health care use declined during the coronavirus disease 2019 (COVID-19) pandemic, the impact on children with complex chronic conditions (CCCs) has not been well reported. OBJECTIVE: To describe the impact of the pandemic on inpatient use and outcomes for children with CCCs. METHODS: This multicenter cross-sectional study used data from the Pediatric Health Information System. We examined trends in admissions between January 2020 through March 2021, comparing them to the same timeframe in the previous 3 years (pre-COVID-19). We used generalized linear mixed models to examine the association of the COVID-19 period and outcomes for children with CCCs presenting between March 16, 2020 to March 15, 2021 (COVID-19 period) to the same timeframe in the previous 3 years (pre-COVID-19). RESULTS: Children with CCCs experienced a 19.5% overall decline in admissions during the COVID-19 pandemic. Declines began in the second week of March of 2020, reaching a nadir in early April 2020. Changes in admissions varied over time and by admission indication. Children with CCCs hospitalized for pneumonia and bronchiolitis experienced overall declines in admissions of 49.7% to 57.7%, whereas children with CCCs hospitalized for diabetes experienced overall increases in admissions of 21.2%. Total and index length of stay, costs, and ICU use, although statistically higher during the COVID-19 period, were similar overall to the pre-COVID-19 period. CONCLUSIONS: Total admissions for children with CCCs declined nearly 20% during the pandemic. Among prevalent conditions, the greatest declines were observed for children with CCCs hospitalized with respiratory illnesses. Despite declines in admissions, overall hospital-level outcomes remained similar.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/hpeds.2021-006334" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2021-006334</a>
2022
Antiel RM
Child
Chronic Disease
COVID-19
Cross-sectional Studies
DePorre A
Fleegler EW
Hersh AL
Hospital Pediatrics
Hospitalization
Hotz A
Humans
Markham JL
May 2022 List
Pandemics
Richardson T
Shah SS
Teufel RJ
Wilder JL
Williams DC
-
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
April 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2022 List
URL Address
<a href="http://doi.org/10.1097/pts.0000000000000719" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/pts.0000000000000719</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
Medication Order Errors at Hospital Admission Among Children With Medical Complexity
Publisher
An entity responsible for making the resource available
Journal of Patient Safety
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Medication Errors; Medication Reconciliation; Child; Hospitalization; Hospitals Pediatric; Humans; Patient Admission; Prospective Studies
Creator
An entity primarily responsible for making the resource
Blaine K; Wright J; Pinkham A; O'Neill M; Wilkerson S; Rogers J; McBride S; Crofton C; Grodsky S; Hall D; Mauskar S; Akula V; Khan A; Mercer A; Berry JG
Description
An account of the resource
OBJECTIVES: We sought to characterize the nature and prevalence of medication order errors (MOEs) occurring at hospital admission for children with medical complexity (CMC), as well as identify the demographic and clinical risk factors for CMC experiencing MOEs. METHODS: Prospective cohort study of 1233 hospitalizations for CMC from November 1, 2015, to October 31, 2016, at 2 children's hospitals. Medication order errors at admission were identified prospectively by nurse practitioners and a pharmacist through direct patient care. The primary outcome was presence of at least one MOE at hospital admission. Statistical methods used included χ2 test, Fisher exact tests, and generalized linear mixed models. RESULTS: Overall, 6.1% (n = 75) of hospitalizations had ≥1 MOE occurring at admission, representing 112 total identified MOEs. The most common MOEs were incorrect dose (41.1%) and omitted medication (34.8%). Baclofen and clobazam were the medications most commonly associated with MOEs. In bivariable analyses, MOEs at admission varied significantly by age, assistance with medical technology, and numbers of complex chronic conditions and medications (P < 0.05). In multivariable analysis, patients receiving baclofen had the highest adjusted odds of MOEs at admission (odds ratio, 2.2 [95% confidence interval, 1.2-3.8]). CONCLUSIONS: Results from this study suggest that MOEs are common for CMC at hospital admission. Children receiving baclofen are at significant risk of experiencing MOEs, even when orders for baclofen are correct. Several limitations of this study suggest possible undercounting of MOEs during the study period. Further investigation of medication reconciliation processes for CMC receiving multiple chronic, home medications is needed to develop effective strategies for reducing MOEs in this vulnerable population.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/pts.0000000000000719" target="_blank" rel="noreferrer noopener">10.1097/pts.0000000000000719</a>
2022
Akula V
April 2022 List
Berry JG
Blaine K
Child
Crofton C
Grodsky S
Hall D
Hospitalization
Hospitals Pediatric
Humans
Journal of Patient Safety
Khan A
Mauskar S
McBride S
Medication Errors
Medication Reconciliation
Mercer A
O'Neill M
Patient Admission
Pinkham A
Prospective Studies
Rogers J
Wilkerson S
Wright 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
April 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2022 List
URL Address
<a href="http://doi.org/10.1097/pec.0000000000002437" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/pec.0000000000002437</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
Low-Resource Emergency Department Visits for Children With Complex Chronic Conditions
Publisher
An entity responsible for making the resource available
Pediatric Emergency 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
Emergency Medical Services; Emergency Service Hospital; Child; Chronic Disease; Hospitalization; Humans; Infant; Retrospective Studies
Creator
An entity primarily responsible for making the resource
Pulcini CD; Coller RJ; Macy ML; Alpern E; Harris D; Rodean J; Hall M; Chung PJ; Berry JG
Description
An account of the resource
OBJECTIVE: Reducing emergency department (ED) use in children with complex chronic conditions (CCC) is a national health system priority. Emergency department visits with minimal clinical intervention may be the most avoidable. We assessed characteristics associated with experiencing such a low-resource ED visit among children with a CCC. METHODS: A retrospective study of 271,806 ED visits between 2014 and 2017 among patients with a CCC in the Pediatric Health Information System database was performed. The main outcome was a low-resource ED visit, where no medications, laboratory, procedures, or diagnostic tests were administered and the patient was not admitted to the hospital. χ2 Tests and generalized linear models were used to assess bivariable and multivariable relationships of patients' demographic, clinical, and health service characteristics with the likelihood of a low- versus higher-resource ED visit. RESULTS: Sixteen percent (n = 44,111) of ED visits among children with CCCs were low-resource. In multivariable analysis, the highest odds of experiencing a low- versus higher-resource ED visit occurred in patients aged 0 year (vs 16+ years; odds ratio [OR], 3.9 [95% confidence interval {CI}, 3.7-4.1]), living <5 (vs 20+) miles from the ED (OR, 1.7 [95% CI, 1.7-1.8]), and who presented to the ED in the day and evening versus overnight (1.5 [95% CI, 1.4-1.5]). CONCLUSIONS: Infant age, living close to the ED, and day/evening-time visits were associated with the greatest likelihood of experiencing a low-resource ED visit in children with CCCs. Further investigation is needed to assess key drivers for ED use in these children and identify opportunities for diversion of ED care to outpatient and community settings.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/pec.0000000000002437" target="_blank" rel="noreferrer noopener">10.1097/pec.0000000000002437</a>
2022
Alpern E
April 2022 List
Berry JG
Child
Chronic Disease
Chung PJ
Coller RJ
Emergency Medical Services
Emergency Service Hospital
Hall M
Harris D
Hospitalization
Humans
Infant
Macy ML
Pediatric Emergency Care
Pulcini CD
Retrospective Studies
Rodean 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 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-047464" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-047464</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
Surgical Interventions During End-of-Life Hospitalizations in Children's Hospitals
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Adolescent; Age Factors; Biopsy; Catheterization; Child; Chronic Disease; Ethnicity; Hospitalization; Infant; International Classification of Diseases; Newborn Infant; Pediatric Hospitals; Preschool Child; Prosthesis Implantation; Race Factors; Retrospective Studies; Salvage Therapy; Surgical Procedures, Operative; Terminal Care; United States; Young Adult
Creator
An entity primarily responsible for making the resource
Traynor MD; Antiel RM; Camazine MN; Blinman TA; Nance ML; Eghtesady P; Lam SK; Hall M; Feudtner C
Description
An account of the resource
OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December 2019 within 49 US children's hospitals in the Pediatric Health Information System database. Surgical procedures, identified by International Classification of Diseases procedure codes, were classified by type and purpose. Descriptive statistics characterized procedures, and hypothesis testing determined if undergoing surgery varied by patient age, race and ethnicity, or the presence of chronic complex conditions (CCCs). RESULTS: Among 33 693 terminal hospitalizations, the majority (n = 30 440, 90.3%) of children were admitted for nontraumatic causes. Of these children, 15 142 (49.7%) underwent surgery during the hospitalization, with the percentage declining over time (P < .001). When surgical procedures were classified according to likely purpose, the most common were to insert or address hardware or catheters (31%), explore or aid in diagnosis (14%), attempt to rescue patient from mortality (13%), or obtain a biopsy (13%). Specific CCC types were associated with undergoing surgery. Surgery during terminal hospitalization was less likely among Hispanic children (47.8%; P < .001), increasingly less likely as patient age increased, and more so for Black, Asian American, and Hispanic patients compared with white patients (P < .001). CONCLUSIONS: Nearly half of children undergo surgery during their terminal hospitalization, and accordingly, pediatric surgical care is an important aspect of end-of-life care in hospital settings. Differences observed across race and ethnicity categories of patients may reflect different preferences for and access to nonhospital-based palliative, hospice, and end-of-life care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2020-047464" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-047464</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Adolescent
Age Factors
Antiel RM
Biopsy
Blinman TA
Camazine MN
Catheterization
Child
Chronic Disease
Eghtesady P
Ethnicity
February 2022 List
Feudtner C
Hall M
Hospitalization
Infant
International Classification of Diseases
Lam SK
Nance ML
Newborn Infant
pediatric hospitals
Pediatrics
Preschool Child
Prosthesis Implantation
Race Factors
Retrospective Studies
Salvage Therapy
Surgical Procedures, Operative
Terminal Care
Traynor MD
United States
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
January 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2022 List
URL Address
<a href="http://doi.org/10.1111/jspn.12333" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jspn.12333</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
Medical complexity and concurrent hospice care: A national study of Medicaid children from 2011 to 2013
Publisher
An entity responsible for making the resource available
Journal for Specialists in Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
pediatric; Child; United States; Hospices; Medicaid; Hospitalization; Patient Protection and Affordable Care Act; hospice care; end-of-life care; concurrent hospice care
Creator
An entity primarily responsible for making the resource
Keim-Malpass J; Cozad MJ; Svynarenko R; Mack JW; Lindley LC
Description
An account of the resource
PURPOSE: Pediatric hospice is a comprehensive model of care for medically complex children at end of life. The Affordable Care Act changed regulatory requirements for pediatric Medicaid enrollees to allow for enrollment into hospice services while still receiving life-prolonging therapy. There are gaps in understanding factors associated with pediatric concurrent hospice care use. The objectives were to examine the prevalence of concurrent hospice care overtime and investigated the relationship between medical complexity and concurrent hospice care among Medicaid children. DESIGN AND METHODS: We used national Medicaid data and included children less than 21 years with an admission to hospice care. Medical complexity was defined with four criteria (i.e., chronic conditions, functional limitations, high health care use and substantial needs). Using multivariate logistic regression, we evaluated the influence of medical complexity on concurrent hospice care use, while controlling for demographic, hospice, and community characteristics. RESULTS: Thirty-four percent of the study sample used concurrent hospice care. Medical complexity was unrelated to concurrent hospice care. However, the four individual criteria were associated. A complex chronic condition was negatively related to concurrent hospice care, whereas technology dependence, multiple complex chronic conditions, and mental/behavioral disorders were positively associated to concurrent care use. PRACTICE IMPLICATIONS: These findings suggest that concurrent hospice care may be important for a subset of medically complex children with functional limitations, high health utilization, and substantial needs at end of life.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jspn.12333" target="_blank" rel="noreferrer noopener">10.1111/jspn.12333</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Child
concurrent hospice care
Cozad MJ
End-of-life Care
Hospice Care
Hospices
Hospitalization
January 2022 List
Journal for Specialists in Pediatric Nursing
Keim-Malpass J
Lindley LC
Mack JW
Medicaid
Patient Protection and Affordable Care Act
Pediatric
Svynarenko R
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 2021 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 2021 List
URL Address
<a href="http://doi.org/10.12927/hcq.2021.26471" target="_blank" rel="noreferrer noopener">http://doi.org/10.12927/hcq.2021.26471</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
How Children and Youth with Medical Complexity Use Hospital and Emergency Department Care across Canada
Publisher
An entity responsible for making the resource available
Healthcare Quarterly
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Canada; children; Hospitalization; Medical complexity; Readmission; youth
Creator
An entity primarily responsible for making the resource
McKenzie K; Dudevich A; Costante A; Chen XK; Foebel AD
Description
An account of the resource
Children and youth with medical complexity are a diverse group with uncommon diagnoses, a spectrum of needs and varying access to supports. Although this population represents a small proportion of all children, their unique needs lead to substantial use of healthcare services. With its first pan-Canadian report on children and youth with medical complexity, the Canadian Institute for Health Information examined how this population uses healthcare services. Key findings include the wide variation in the rate of medical complexity among children and youth across Canada. Children and youth with medical complexity were found to require a high proportion of hospital and emergency department care; however, their readmission rates were found to be lower than that of the general pediatric population.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12927/hcq.2021.26471" target="_blank" rel="noreferrer noopener">10.12927/hcq.2021.26471</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Canada
Chen XK
Children
Costante A
Dudevich A
Foebel AD
Healthcare Quarterly
Hospitalization
McKenzie K
Medical Complexity
November 2021 List
Readmission
Youth
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
September 2021 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 2021 List
URL Address
<a href="http://doi.org/10.1016/j.arcped.2021.05.001" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.arcped.2021.05.001</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
Patients with chronic conditions and their complex care needs in a tertiary care hospital
Publisher
An entity responsible for making the resource available
Archives de Pediatrie
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
chronic disease; Enteral Nutrition; Home health-care agencies; Hospitalization; Palliative care medicine
Creator
An entity primarily responsible for making the resource
Oztek Celebi FZ; Senel S
Description
An account of the resource
Introduction: Health care for children with complex chronic conditions (CCC) constitutes an evolving and a challenging part of practices in pediatrics. These children need end-of-life services such as palliative care. The aim of this study was to identify the frequency of patients with CCC among all hospitalized children at our general pediatrics services and to describe the demographics, diagnosis, clinical spectrum, long-term care needs, and mortality data of patients with CCC. Patients and Methods: All hospitalizations in 2018 at the general pediatric services were screened retrospectively. Patients' hospitalization diagnoses, gender, age, comorbid conditions, number of emergency admissions in 2018, intensive care unit needs, mortality rates, and the number of hospitalizations in 2018 were investigated. Result(s): A total of 1591 patients were hospitalized for 2083 times in 2018. Overall, 145 of 1591 patients (9%) had CCC. Patients with CCC were hospitalized for 472 times (23% of all hospitalizations). The number of emergency admissions, the number of hospitalizations in 2018 and the need for intensive care, and the mortality rate during hospitalization for patients with CCC were significantly higher than those for patients without CCC. The median length of hospitalization in patients with CCC was significantly longer. Conclusion(s): Patients with CCC were hospitalized frequently and longer, had increased emergency and PICU admissions, and special long-term care needs. Pediatricians who pioneer care for children with CCC need education, training, and coordinated support to ensure qualified long-term care for these patients. Copyright © 2021 French Society of Pediatrics
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.arcped.2021.05.001" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2021.05.001</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Archives de Pediatrie
Chronic Disease
Enteral Nutrition
Home health-care agencies
Hospitalization
Oztek Celebi FZ
Palliative care medicine
Senel S
September 2021 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
September 2021 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 2021 List
URL Address
<a href="http://doi.org/10.1097/PEC.0000000000001620" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/PEC.0000000000001620</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
What Do We Know about Pediatric Palliative Care Patients Consulting to the Pediatric Emergency Department?
Publisher
An entity responsible for making the resource available
Pediatric Emergency Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
child; emergency health service; hospitalization; palliative care; referral and consultation; retrospective studies
Creator
An entity primarily responsible for making the resource
Gaucher N; Humbert N; Gauvin F
Description
An account of the resource
Objectives The objective of this study was to describe the characteristics of pediatric palliative care (PPC) patients presenting to a pediatric emergency department (ED) and these patients' ED visits. Methods This retrospective chart review was conducted from April 1, 2007, to March 31, 2012, in a tertiary care pediatric university-affiliated hospital. Eligible patients had initial PPC consultations during the study period; all ED visits by these patients were included. Data were drawn from the ED's electronic data system and patient's medical chart. Results A total of 290 new patients were followed by the PPC team, and 94 (32.4%) consulted the ED. Pediatric palliative care patients who consulted the ED had a median age of 7 years and baseline diagnoses of cancer (39.4%) or encephalopathy (27.7%). No patients died in the ED, but 36 (38.3%) died in hospital after an ED visit and 18 (19.1%) within 72 hours of admission. Pediatric palliative care patients consulted 219 times, with a median number of visits per patient of 2 (range, 1-8). They presented acutely ill as per triage scales. Reasons for consultation included respiratory distress/dyspnea (30.6%), pain (12.8%), seizure (11.4%), and fever (9.1%). Patients were often admitted to wards (61.2%) and the pediatric intensive care unit (7.3%). Two thirds (65.7%) of patients had signed an advanced care directive at the time of their visit. Discussions about goals of care occurred in 37.4% of visits. Conclusions Pediatric palliative care patients present to the ED acutely ill, often at their end of life, and goals of care are not always discussed. This is a first step toward understanding how to improve PPC patients' ED care. Copyright © Wolters Kluwer Health, Inc. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/PEC.0000000000001620" target="_blank" rel="noreferrer noopener">10.1097/PEC.0000000000001620</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Child
Emergency Health Service
Gaucher N
Gauvin F
Hospitalization
Humbert N
Palliative Care
Pediatric Emergency Care
Referral And Consultation
Retrospective Studies
September 2021 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
July 2021 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 2021 List
URL Address
<a href="http://doi.org/10.1111/jpc.14771" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jpc.14771</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment limitation and advance planning: Hospital-wide audit of paediatric death
Publisher
An entity responsible for making the resource available
Journal of Paediatrics and Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
advanced care planning; Child; documentation; end-of-life care; Hospitalization; Pediatric Hospitals; paediatrics; Palliative Care; Retrospective Studies; Terminal Care; treatment limitation
Creator
An entity primarily responsible for making the resource
Audigé M; Gillam L; Stark Z
Description
An account of the resource
AIM: To examine paediatric deaths following withdrawal or withholding of medical treatment (WWMT) from a hospital-wide perspective and identify changes over a 10 year period. METHODS: A retrospective review of medical records was conducted for all paediatric inpatient deaths at the Royal Children's Hospital, Melbourne from April 2015 to April 2016, and results were compared to 2007 data from our centre. χ(2) tests were used for comparisons. RESULTS: A total of 101 deaths occurred in the inpatient setting in 2015-2016. Most deaths followed WWMT (88/101, 87%) and occurred in children with pre-existing chronic conditions (85/101, 85%). There was a shift to earlier discussions with parents regarding WWMT compared to 10 years prior. Cases where discussions began prior to the last admission increased from 4 to 19% (P = 0.004). There was increased paediatric palliative care (PPC) involvement (10 vs. 37%, P < 0.001), and a slightly greater proportion of children died outside of intensive care (16 vs. 22%, P = 0.25). In 2015-2016, subgroup analysis showed that children who died as inpatients but outside of intensive care were 76% more likely to have PPC involved than those who died in intensive care (P < 0.001). Their families were 51% more likely to have discussed WWMT with medical staff before the last admission (P < 0.001). CONCLUSIONS: The last decade has seen an increase in PPC involvement and advance discussions around WWMT at our centre. Both of these are associated with death outside of intensive care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jpc.14771" target="_blank" rel="noreferrer noopener">10.1111/jpc.14771</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).
2020
advanced care planning
Audigé M
Child
Documentation
End-of-life Care
Gillam L
Hospitalization
Journal of Paediatrics and Child Health
July 2021 List
Paediatrics
Palliative Care
pediatric hospitals
Retrospective Studies
Stark Z
Terminal Care
treatment limitation
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2021 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 2021 List
URL Address
<a href="http://doi.org/10.1002/ppul.25289" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ppul.25289</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
Telemedicine in children with medical complexity on home ventilation during the COVID-19 pandemic
Publisher
An entity responsible for making the resource available
Pediatric Pulmonology
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Adolescent; Child; Chronic Disease; COVID-19; Home Care Services; Hospitalization; mechanical ventilation; noninvasive ventilation; Pandemics; Artificial Respiration; respiratory technology; SARS-CoV-2; Telemedicine; telemonitoring
Creator
An entity primarily responsible for making the resource
Onofri A; Pavone M; De Santis S; Verrillo E; Caggiano S; Ullmann N; Cutrera R
Description
An account of the resource
Children with medical complexity (CMC) are patients with one or more complex chronic conditions dependent on medical technologies. In our unit (Pediatric Pulmonology and Respiratory Intermediate Care Unit, Department of Pediatrics, "Bambino Gesù" Children's Hospital and Research Institute), we regularly follow-up CMC patients, particularly children on long-term, invasive (IMV) or noninvasive (NIV), ventilation. Children suffering from chronic diseases and with medical complexity have lost the possibility to go to the hospital during the COVID-19 pandemic. The aim of this article is to describe our experience with telemedicine (teleconsultation [TC] and telemonitoring of ventilator [TM]) in CMC on ventilation. We presented 21 children on long-term ventilation (NIV or IMV) whose planned hospital admission was postponed due to lockdown. A total of 12 healthcare problems were detected during scheduled TCs. Only one problem was not solved by our remote intervention. Specifically, TM has allowed us to change the ventilator parameters and to monitor patients on ventilation remotely. In conclusion, the use of telemedicine in CMC ventilated patients resulted in a feasible tool to avoid in-person visits during the pandemic.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ppul.25289" target="_blank" rel="noreferrer noopener">10.1002/ppul.25289</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Adolescent
Artificial Respiration
Caggiano S
Child
Chronic Disease
COVID-19
Cutrera R
De Santis S
home care services
Hospitalization
July 2021 List
Mechanical Ventilation
Noninvasive Ventilation
Onofri A
Pandemics
Pavone M
Pediatric Pulmonology
respiratory technology
SARS-CoV-2
Telemedicine
telemonitoring
Ullmann N
Verrillo E
-
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 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2021 List
URL Address
<a href="http://doi.org/10.1016/j.pedn.2021.03.028" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pedn.2021.03.028</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A description of children dependent on long term ventilation via tracheostomy and their hospital resource use
Publisher
An entity responsible for making the resource available
Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Child; Mechanical ventilation; Hospitalization; Tracheostomy; Health services
Creator
An entity primarily responsible for making the resource
Giambra BK; Mangeot C; Benscoter DT; Britto MT
Description
An account of the resource
PURPOSE: To describe the proportion of children with an index hospitalization in 2014 who had established long-term invasive ventilator dependence (LTVD), and determine regional variation in hospital length of stay, charges, and readmissions. DESIGN AND METHODS: Multicenter, longitudinal, retrospective cohort study using a recently established algorithm to identify children with LTVD from the Pediatric Health Information System database with an index hospitalization at least once during 2014, excluding normal newborn care or chemotherapy, and the subset with established LTVD. Hospitals were grouped by geographic regions. Analysis included descriptive statistics and multi-variable mixed modeling for length of stay, charges, and readmissions. RESULTS: Of the 615,883 unique children discharged from 45 children's hospitals in 2014, 2235 (0.4%) had established LTVD. Of these, 342 (15%) were hospitalized in the Northeast, 677 (30%) Midwest, 733 (32%) South and 481 (22%) West. Most had at least two complex chronic conditions (97%) and used a medical device for at least two body systems (71%). No statistically significant regional variation was found for length of stay, charges, or readmissions after adjustment for child demographics, admission type, disposition, primary diagnosis, ICU stay, and number of chronic conditions. CONCLUSIONS: This study characterized the population of children with LTVD hospitalized in 2014. No regional variation was found for length of stay, charges, or readmissions. PRACTICE IMPLICATIONS: Children with established LTVD make up a small subset of all children admitted to children's hospitals however, they require substantial, costly, multifaceted care as most have additional complex chronic conditions and require multiple medical devices.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pedn.2021.03.028" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2021.03.028</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Benscoter DT
Britto MT
Child
Giambra BK
Health Services
Hospitalization
Journal of Pediatric Nursing
June 2021 List
Mangeot C
Mechanical Ventilation
Tracheostomy
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.323" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.323</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
Parent-Reported Outcomes of Prognostic Communication in Hospitalized Children with Advanced Heart Disease (S762)
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
adult; cardiology; Caucasian; child; cohort analysis; conference abstract; controlled study; conversation; decision making; expectation; female; heart single ventricle; high school; hospitalization; hospitalized child; human; infant; intubation; length of stay; major clinical study; male; married person; medical record review; mother; prognosis; prospective study; pulmonary hypertension; pulmonary vein stenosis; recall; young adult
Creator
An entity primarily responsible for making the resource
Miller M K; Morell E; Feraco A; Goldberg S; Reichman J; Sahakian L; Sleeper L; Blume E
Description
An account of the resource
Objectives: * Describe a prospective study to evaluate how parents of children with advanced heart disease (AHD) perceive communication about prognosis with their child's physicians. * Describe results from this analysis that found no correlation between length of stay of a child with advanced heart disease and parent reports of conflicting information from physicians. Original Research Background and Objectives: Communication between parents and physicians is essential to high-quality care. For families of patients with AHD, understanding prognosis is critical to decision making and is associated with less perceived suffering at end of life. This is the first study to prospectively evaluate how parents of children with AHD perceive prognostic communication with their child's physicians.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.323" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.323</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).
2020
Adult
Blume E
Cardiology
Caucasian
Child
Cohort Analysis
conference abstract
Controlled Study
Conversation
Decision Making
Expectation
Female
Feraco A
Goldberg S
heart single ventricle
high school
Hospitalization
Hospitalized Child
Human
Infant
Intubation
Journal of Pain and Symptom Management
Length Of Stay
Major Clinical Study
Male
March 2020 List
married person
Medical Record Review
Miller M K
Morell E
Mother
Prognosis
Prospective Study
pulmonary hypertension
pulmonary vein stenosis
Recall
Reichman J
Sahakian L
Sleeper L
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
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/10.1590/s1980-220x2018049603521" target="_blank" rel="noreferrer noopener">http://doi.org/10.1590/s1980-220x2018049603521</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
From hospitalization to grief: meanings parents assign to their relationships with pediatric oncology professional
Publisher
An entity responsible for making the resource available
Revista da Escola de Enfermagem da USP
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
bereavement; child; death; family nursing; hospitalization; hospitalized; neoplasm; Professional-Family Relations
Creator
An entity primarily responsible for making the resource
Santos M R D; Wiegand D L; Sa N N; Misko M D; Szylit R
Description
An account of the resource
OBJECTIVE: To understand the meanings assigned by bereaved parents to their relationships with healthcare professionals during the end-of-life hospitalization of their child. METHOD: Qualitative-interpretative study based on hermeneutics. Data were collected from interviews with parents who were grieving the death of a child with cancer in the hospital and participant observation in an oncology ward. Deductive thematic analysis for data interpretation ensued. RESULTS: The experience of parents is the sum of all relationships during treatment. Therefore, meanings form a tangle of interrelated senses built not only in the interaction with these professionals, but also with the child and with grief itself. In relationships with professionals, meanings related to the memories of the child, negative emotions and regret were identified. CONCLUSION: The experiences and meanings of grief are shaped by the social processes and interactions experienced by the family in the hospital. The relationship with the professionals represents part of the support in coping with the grief after the child's death in the hospital, due to the perpetuity of the love shown for the child as a possible legacy in the legitimacy of the experienced interactions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1590/s1980-220x2018049603521" target="_blank" rel="noreferrer noopener">10.1590/s1980-220x2018049603521</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Bereavement
Child
Death
Family Nursing
Hospitalization
Hospitalized
Misko M D
Neoplasm
Oncology 2019 List
Professional-family Relations
Revista da Escola de Enfermagem da USP
Sa N N
Santos M R D
Szylit R
Wiegand D L
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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/10.1111/ecc.12879" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/ecc.12879</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
Burden of treatment in the face of childhood cancer: A quantitative study using medical records of deceased children
Publisher
An entity responsible for making the resource available
European Journal of Cancer Care (Engl)
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Adaptation; Adolescent; burden of treatment; Central Nervous System Neoplasms/therapy; Child; Death; family; Female; Hospitalization; Humans; Infant; inpatient stays; Length of Stay; leukaemia; Leukemia/therapy; Male; Medical Records; Neoplasms/*therapy; Newborn; paediatric oncology; place of death; Preschool; Psychological; Retrospective Studies; Switzerland; Terminal Care
Creator
An entity primarily responsible for making the resource
Rost M; Wangmo T; Rakic M; Acheson E; Rischewski J; Hengartner H; Kuhne T; Elger B S
Description
An account of the resource
Lived experiences of childhood cancer patients and their families have been described as interrupted and as a loss of normal life. Apart from symptoms due to the cancer disease, families continuously experience burden of treatment. Since coping capacities are unique to each individual, we captured variables that offer objective measures of treatment burden, with a particular focus on the disruptive effects of treatment on families' lives. Our sample was comprised by 193 children that died of cancer. Medical records were extracted retrospectively. Quantitative data were statistically analysed with respect to variables related to treatment burden. Deceased children with cancer and their families faced a significant burden of treatment. Results revealed that deceased leukaemia patients had a higher number of inpatient stays, spent more time in the hospital both during their illness and during the last month of their life, and were more likely to die in the hospital when compared to deceased patients with CNS neoplasms and with other diagnoses. Our findings highlight the disruptive effects of treatment that are likely to have a great impact on families' daily life, that go beyond exclusively focusing on side effects, and that needs to be taken into account by the treating staff.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/ecc.12879" target="_blank" rel="noreferrer noopener">10.1111/ecc.12879</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).
2018
Acheson E
Adaptation
Adolescent
burden of treatment
Central Nervous System Neoplasms/therapy
Child
Death
Elger B S
European Journal of Cancer Care (Engl)
Family
Female
Hengartner H
Hospitalization
Humans
Infant
inpatient stays
Kuhne T
Length Of Stay
leukaemia
Leukemia/therapy
Male
Medical Records
Neoplasms/*therapy
Newborn
Oncology 2019 List
Paediatric oncology
Place Of Death
Preschool
Psychological
Rakic M
Retrospective Studies
Rischewski J
Rost M
Switzerland
Terminal Care
Wangmo 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
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.32035" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cncr.32035</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
High-intensity end-of-life care among children, adolescents, and young adults with cancer who die in the hospital: A population-based study from the French national hospital database
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; adolescents; adult; article; cancer; cancer chemotherapy; cancer diagnosis; cancer patient; child; children; cohort analysis; controlled study; emergency care; emergency ward; end of life; female; France; hematologic malignancy; hospitalization; human; intensive care unit; major clinical study; male; multicenter study; outcome assessment; palliative care; palliative therapy; retrospective study; terminal care; time of death; young adult; young adults
Creator
An entity primarily responsible for making the resource
Revon-Riviere G; Pauly V; Baumstarck K; Bernard C; Andre N; Gentet J C; Seyler C; Fond G; Orleans V; Michel G; Auquier P; Boyer L
Description
An account of the resource
Background: Efforts to improve the quality of end-of-life (EOL) care depend on better knowledge of the care that children, adolescents, and young adults with cancer receive, including high-intensity EOL (HI-EOL) care. The objective was to assess the rates of HI-EOL care in this population and to determine patient- and hospital-related predictors of HI-EOL from the French national hospital database. Method(s): This was a population-based, retrospective study of a cohort of patients aged 0 to 25 years at the time of death who died at hospital as a result of cancer in France between 2014 and 2016. The primary outcome was HI-EOL care, defined as the occurrence of >=1 chemotherapy session <14 days from death, receiving care in an intensive care unit >=1 time, >1 emergency room admission, and >1 hospitalization in an acute care unit in the last 30 days of life. Result(s): The study included 1899 individuals from 345 hospitals; 61.4% experienced HI-EOL care. HI-EOL was increased with social disadvantage (adjusted odds ratio [AOR], 1.30; 95% confidence interval [CI], 1.03-1.65; P =.028), hematological malignancies (AOR, 2.09; 95% CI, 1.57-2.77; P <.001), complex chronic conditions (AOR, 1.60; 95% CI, 1.23-2.09; P =.001) and care delivered in a specialty center (AOR, 1.70; 95% CI, 1.22-2.36; P =.001). HI-EOL was reduced in cases of palliative care (AOR, 0.31; 95% CI, 0.24-0.41; P <.001). Conclusion(s): A majority of children, adolescents, and young adults experience HI-EOL care. Several features (eg, social disadvantage, cancer diagnosis, complex chronic conditions, and specialty center care) were associated with HI-EOL care. These findings should now be discussed with patients, families, and professionals to define the optimal EOL. Copyright © 2019 American Cancer Society
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/cncr.32035" target="_blank" rel="noreferrer noopener">10.1002/cncr.32035</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Adolescent
Adolescents
Adult
Andre N
Article
Auquier P
Baumstarck K
Bernard C
Boyer L
Cancer
Cancer Chemotherapy
Cancer Diagnosis
Cancer Patient
Child
Children
Cohort Analysis
Controlled Study
Emergency Care
Emergency Ward
End Of Life
Female
Fond G
France
Gentet J C
Hematologic Malignancy
Hospitalization
Human
Intensive Care Unit
Major Clinical Study
Male
Michel G
Multicenter Study
Oncology 2019 List
Orleans V
outcome assessment
Palliative Care
Palliative Therapy
Pauly V
Retrospective Study
Revon-Riviere G
Seyler C
Terminal Care
time of death
Young Adult
Young Adults
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2019 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27713</a>
Dublin Core
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
Medication utilization for symptom management by pediatric inpatients with cancer at end-of-life
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adult; anxiety; benzodiazepine; Black person; cancer patient; child; childhood cancer; conference abstract; controlled study; death; decision making; do not resuscitate order; drug therapy; ethnicity; female; gender; hospital patient; hospitalization; human; length of stay; major clinical study; male; manager; medicaid; multicenter study; nausea; opiate; pain; patient history of bone marrow transplantation; pediatric patient; recipient; retrospective study; solid malignant neoplasm; tumor diagnosis; university hospital; young adult
Creator
An entity primarily responsible for making the resource
Prozora S; Shabanova V; Massaro S; Davidoff A
Description
An account of the resource
Background: Despite advances in pediatric oncology care, most children that die each year from cancer report significant suffering at end-of-life. Commonly reported symptoms include pain, anxiety, and nausea. More than half of pediatric cancer patients die in the hospital, yet little is known about medication use for symptom management during their terminal hospitalizations. Objective(s): To describe the utilization patterns of opiates, benzodiazepines, and gastrointestinal (GI) related medications for commonly reported symptoms by pediatric cancer inpatients during their last week of life. Design/Method: This retrospective study uses data from the Vizient clinical database/resource manager (CDB/RMTM), a compilation of clinical and resource use data from over 100 academic medical centers and their affiliates nationally. Pediatric patients (ages 0-21) with a diagnosis of malignancy who died during an inpatient hospitalization from 2010-2017 were included (n = 1,659). Patients admitted for less than 1 week were excluded. Individual medications were categorized as opiate, benzodiazepine, or GI-related. Exposure to each group was ascertained for all patients at two time points: one week and one day prior to death. Factors associated with the time of exposure were examined using generalized estimating equations. Results were summarized using adjusted odds ratios (aOR). Result(s): Opiate exposure increased from 76% one week prior to death to 82% one day prior (aOR 1.5; p<0.001). Similarly, use of benzodiazepines also increased from 53% to 66% (aOR 1.3; p = 0.024). Receipt of GI medications decreased from 92% to 89% (aOR 0.7; p = 0.001). Opiates and benzodiazepines were more likely to be administered to patients with solid tumor diagnosis (aOR 1.4, 1.2), history of bone marrow transplant (BMT) (aOR 1.3, 1.4), and longer length of stay (LOS), respectively. Benzodiazepine utilization was lower among blacks (aOR 0.6) and Medicaid recipients (aOR 0.8). GI medications were also more likely to be received by patientswith history ofBMT(aOR 1.8) and longer LOS; additionally, exposure was higher in those age 5-9 (aOR 1.9) and of Asian race (aOR 2.5). Reported aORs are significant at p<0.05. Gender, ethnicity, study year, location in ICU, and DNR status did not significantly affect exposure in any category. Conclusion(s): Not all patients are receiving medications typically used for symptom management in the week preceding death. Opiate and benzodiazepine exposure increased while GI medication use decreased. Earlier and more consistent intervention with these medications may reduce patient suffering. Furthermore, variability in utilization associated with patient characteristics suggests differences in symptomatology and provider/family decision-making warranting further study.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Adult
anxiety
Benzodiazepine
Black person
Cancer Patient
Child
Childhood Cancer
conference abstract
Controlled Study
Davidoff A
Death
Decision Making
do not resuscitate order
Drug Therapy
Ethnicity
Female
Gender
Hospital Patient
Hospitalization
Human
Length Of Stay
Major Clinical Study
Male
manager
Massaro S
Medicaid
Multicenter Study
Nausea
Oncology 2019 List
Opiate
Pain
patient history of bone marrow transplantation
Pediatric Blood and Cancer
pediatric patient
Prozora S
Recipient
Retrospective Study
Shabanova V
solid malignant neoplasm
tumor diagnosis
University Hospital
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
2019 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1002/pbc.28013" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.28013</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
Palliative care utilization in hospitalized children with cancer
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
2020
Subject
The topic of the resource
aged; article; brain cancer; cancer model; child; Childhood cancer; cohort analysis; controlled study; female; hospital admission; hospital cost; hospital mortality; hospitalization; hospitalized child; human; human tissue; length of stay; major clinical study; male; mortality risk; palliative therapy; physician; public health; resource allocation
Creator
An entity primarily responsible for making the resource
Cheng B T; Wangmo T
Description
An account of the resource
Background: There is growing evidence that palliative care (PC) is associated with increased quality of life in children with cancer. Despite increasing recommendations in support of PC to improve pediatric oncology care, little is known about its patterns of use.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.28013" target="_blank" rel="noreferrer noopener">10.1002/pbc.28013</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).
2020
Aged
Article
brain cancer
cancer model
Cheng B T
Child
Childhood Cancer
Cohort Analysis
Controlled Study
Female
Hospital Admission
hospital cost
Hospital Mortality
Hospitalization
Hospitalized Child
Human
Human Tissue
Length Of Stay
Major Clinical Study
Male
mortality risk
Oncology 2019 List
Palliative Therapy
Pediatric Blood and Cancer
Physician
Public Health
Resource Allocation
Wangmo 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
A name given to the resource
January 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
January 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2019.07.034" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpeds.2019.07.034</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
Variation in Hospitalization Rates Following Emergency Department Visits in Children with Medical Complexity
Publisher
An entity responsible for making the resource available
Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
children with medical complexity; emergency department; hospitalization
Creator
An entity primarily responsible for making the resource
Coller R J; Rodean J; Linares D E; Chung P J; Pulcini C; Hall M; Alpern E; Mosquera R; Casto E; Berry J G
Description
An account of the resource
Objectives: To evaluate factors associated with admission from emergency department (ED) encounters for children with medical complexity (CMC) and to quantify the hospital admission rate as well as variation in adjusted hospital admission rates across EDs.Study Design: Retrospective study of 271 806 visits to 37 EDs in freestanding children's hospitals from January 1, 2014, to June 30, 2017, for patients of all ages with a complex chronic condition. Associations between patient demographic, clinical, and health services characteristics and the likelihood of hospital admission were identified using generalized linear models, which were then used to calculate adjusted hospital admission rates.Results: Hospital admission occurred with 25.7% of ED visits. Characteristics with the greatest aOR of hospitalization were ≥3 compared with 0 prior hospitalizations in 365 days (4.7; 95% CI, 4.5-4.9), ED arrival overnight compared with during workday 3.2 (95% CI, 3.1-3.3)], and ≥6 vs 0-1 chronic conditions (1.6; 95% CI, 1.5-1.6). Adjusted hospital admission rates varied significantly (P < .001) across EDs (21.1% [10th percentile]) and 30.0% [90th percentile]). Significant variation remained when excluding low-intensity ED visits, excluding hospitalizations requiring surgery and/or intensive care, or restricting the cohort to overnight ED arrival and to children with ≥3 prior hospitalizations.Conclusions: CMC are frequently admitted from the ED. Substantial variation in CMC hospital admission rates across EDs exists after case-mix adjustment.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2019.07.034" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2019.07.034</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Alpern E
Berry J G
Casto E
Children With Medical Complexity
Chung P J
Coller R J
Emergency Department
Hall M
Hospitalization
January 2020 List
Journal of Pediatrics
Linares D E
Mosquera R
Pulcini C
Rodean 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
December 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
December 2019 List
URL Address
<a href="http://doi.org/10.1097/01.ccm.0000551171.15113.a3" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.ccm.0000551171.15113.a3</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
Palliative care allocation among critically ill children is highly variable in the United States
Publisher
An entity responsible for making the resource available
Critical Care 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
artificial ventilation; child; cohort analysis; conference abstract; controlled study; critically ill patient; female; hospitalization; household income; human; infant; insurance; length of stay; major clinical study; male; morbidity; mortality; multicenter study; neonatal intensive care unit; newborn; palliative therapy; race; resource allocation; retrospective study; suburban area; United States
Creator
An entity primarily responsible for making the resource
O'Keefe S; Maddux A; Bennett K; Youngwerth J; Czaja A
Description
An account of the resource
Learning Objectives: Palliative Care (PC) is a scarce resource. Little is known about its allocation among critically ill children. Previously proposed criteria may help identify children who may benefit from PC. Method(s): This is a retrospective cohort study of patients aged <40 years requiring ICU admission (excluding neonatal ICU) among 51 children's hospitals from 2010-2017. Hospitalizations were categorized into 3 mutually exclusive groups: 1. PICU based criteria adapted from previously published criteria (PC-ICU) 2. Additional Criteria (AC = chronic complex condition not in PCICU) 3. No Criteria (NC). Characteristics, outcomes and PC use (based on ICD administrative charges) were compared using chi2 or kruskal-wallis. We also explored PC patterns over time. Result(s): 93499 subjects with 114510 hospitalizations had >= 1 ICU admission. 15% subjects had >1 hospitalization. Median age at admission was 19 months (IQR 2-117). 56%, 39% and 5% of hospitalizations met PC-ICU, AC and NC criteria respectively. PC-ICU admissions had higher severity of illness, number of procedures, need for mechanical ventilation, CPR, mechanical ventilation days, length of stay, charges and mortality (p<=0.001). PC consult was present in 4.5% of hospitalizations, higher among PC-ICU than AC and NC groups (5.8%, 2.9% and 0.3% respectively, p<=0.001). Median age of children receiving PC was younger in PC-ICU (34 months v 52 and 59 months in AC and NC groups respectively). PC use was slightly higher among patients living in urban/suburban areas (4.5% v 4%, p<0.004), with governmentbased insurance (4.7% v 4%, p<=0.0001) and of non-white race (4.6% v 4.3%, p<0.04). Household income did not differ between PC and no-PC (p= 0.6). PC use increased steadily from 2010-2017 from 1% to 6.7%, with greatest change observed in PC-ICU group (1.4% to 9%), followed by the AC group (1% to 4.7%) and with little change in NC group (0 to 0.5%). PC use varied among institutions ranging from 0-44% in PC-ICU, 0-12% in AC and 0-2% in NC groups respectively. Conclusion(s): National PC use remain low but has increased over time, especially among those meeting PC-ICU criteria who are at high risk of morbidity and mortality. However, PC use varies substantially across ICUs and across certain demographic groups. Future research to understand the impact of PC for critically ill children could help optimize resource allocation.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.ccm.0000551171.15113.a3" target="_blank" rel="noreferrer noopener">10.1097/01.ccm.0000551171.15113.a3</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Artificial Ventilation
Bennett K
Child
Cohort Analysis
conference abstract
Controlled Study
Critical Care Medicine
Critically Ill Patient
Czaja A
December 2019 List
Female
Hospitalization
household income
Human
Infant
Insurance
Length Of Stay
Maddux A
Major Clinical Study
Male
Morbidity
Mortality
Multicenter Study
Neonatal Intensive Care Unit
Newborn
O'Keefe S
Palliative Therapy
race
Resource Allocation
Retrospective Study
suburban area
United States
Youngwerth 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
December 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
December 2019 List
URL Address
<a href="http://doi.org/10.1097/01.ccm.0000551170.37983.db" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.ccm.0000551170.37983.db</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
Palliative care integration in pediatric cardiac intensive care units: A novel champion-based model
Publisher
An entity responsible for making the resource available
Critical Care 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
child; comorbidity; conceptual framework; conceptual model; conference abstract; consensus; coronary care unit; feasibility study; heart development; heart disease; hospitalization; human; morbidity; outcome assessment; palliative therapy; prognosis; rotation; simulation; total quality management
Creator
An entity primarily responsible for making the resource
Moynihan K; Kaye E; Bailey V; Wolfe J; Thiagarajan R; Snaman J
Description
An account of the resource
Learning Objectives: Integration of pediatric palliative care (PPC) into the management of children with serious illness and their families is widely endorsed by international organizations and experts in the field as standard of care. However, timely referral to, and integration of PPC into the traditionally cure-orientated Cardiac Intensive Care Unit (CICU) remains variable. Despite significant declines in mortality for children with cardiac disease, key challenges confront the pediatric CICU community with regards to prognostication and discussion of goals of care. In the context of significant comorbidities and technological dependence, lengthy hospitalizations and recurrent admissions as well as interventions risking significant morbidity, these patients and families would benefit from PPC involvement across the illness trajectory. Methods: We propose a novel, conceptual framework for palliative care integration into the CICU using expert consensus and literature review. Results: The model utilizes CICU-based, interdisciplinary "champions". Pediatric Palliative Care Champions (PPCCs) would be identified from within the CICU team and receive additional training through PPC courses and rotations with sub-specialty PPC services. PPCCs would perform 3 primary roles. First, their clinical role as a liaison aims to strengthen provision of primary palliative care in daily CICU practice and improve utilization of sub-specialty PPC by encouraging earlier involvement in more complex patients' management. Second, PPCCs will lead educational and communication training of CICU staff including simulation sessions, focused on eliciting preferences, discussing prognosis, providing difficult news, assessing hopes and worries, and making goal-based recommendations. Third, PPCCs will be integral in CICU operational aspects and quality improvement initiatives including the development of CICU protocols and standard operating procedures to enhance the provision of high quality care at the end of life. Conclusions: This novel conceptual model for integration of PPC into CICUs is designed for adaptability in the context of cultural, financial, personnel, and logistic needs and constraints unique to each institution. While the PPCC framework offers several unique advantages over other care models, barriers to implementation are anticipated. Further research is needed to investigate the feasibility, acceptability, and potential efficacy of this model on standard outcome measures as well as patient- and parent-reported metrics.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.ccm.0000551170.37983.db" target="_blank" rel="noreferrer noopener">10.1097/01.ccm.0000551170.37983.db</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Bailey V
Child
Comorbidity
Conceptual Framework
conceptual model
conference abstract
Consensus
coronary care unit
Critical Care Medicine
December 2019 List
Feasibility Study
heart development
heart disease
Hospitalization
Human
Kaye E
Morbidity
Moynihan K
outcome assessment
Palliative Therapy
Prognosis
Rotation
Simulation
Snaman J
Thiagarajan R
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
A name given to the resource
October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="http://doi.org/10.1542/peds.2019-0160" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2019-0160</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
Integration of Pediatric Palliative Care Into Cardiac Intensive Care: A Champion-Based Model
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2019-0160" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-0160</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
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
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="http://doi.org/10.20344/amp.10437" target="_blank" rel="noreferrer noopener">http://doi.org/10.20344/amp.10437</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
Hospital inpatient use in mainland Portugal by children with complex chronic conditions (2011 - 2015). [Portuguese]
Publisher
An entity responsible for making the resource available
Acta Medica Portuguesa
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
death; Child; adolescent; article; child; female; human; male; palliative therapy; pediatric patient; retrospective study; controlled study; Hospitalization; national health service; length of stay; Palliative care; newborn; hospitalization; nonparametric test; mortality; cancer radiotherapy; developed country; hospital patient; needs assessment; Needs assessment; outpatient; Portugal; radiotherapy
Creator
An entity primarily responsible for making the resource
Lacerda A F; Oliveira G; Cancelinha C; Lopes S
Description
An account of the resource
Introduction: Due to epidemiological change, interest in complex chronic conditions has been increasing within the pediatric health system. As such, we aim to evaluate hospital inpatient care in the National Health Service (mainland Portugal) by pediatric patients (0 - 17 years) with complex chronic conditions. Material(s) and Method(s): Observational longitudinal retrospective epidemiological study using anonymized administrative data. We selected hospitalizations within the pediatric age limit, 2011 - 2015; healthy newborns and radiotherapy outpatients were excluded. A descriptive analysis of the admissions with complex chronic conditions was analysed by number of complex chronic conditions categories and by complex chronic conditions categories. Non-parametric tests were applied to length of stay, expense, and mortality. Result(s): Out of 419 927 admissions, 64 918 (15.5%) contained at least one complex chronic conditions code. These admissions due to complex chronic conditions represented 29.8% of hospital days, 39.4% of expense and 87.2% of deaths. Compared to those without complex chronic conditions, expense was double (median 1467 vs 745) and mortality 40 times higher (2.4% vs 0.06%). Of these, 46% were planned (no complex chronic conditions 23.2%); 64.8% occurred in group III - IV hospitals (no complex chronic conditions 27.1%). Malignant was the most frequent category (23.0%); neonatal had the highest median length of stay (12 days, 6 - 41), median expense (3568,929 - 24 602), and number of deaths (43.5% of total). Discussion(s): As in other developed countries where the number of pediatric admissions is decreasing, in mainland Portugal we found an increase in the proportion of complex chronic conditions admissions, which are longer, costlier and deadlier (trends intensified in the presence of two or more complex chronic conditions categories). Conclusion(s): Complex chronic conditions are relevant in the activity and costs regarding pediatric hospitalizations in mainland Portugal. Recognizing this and integrating pediatric palliative care from the moment of diagnosis are essential to promote appropriate hospital use, through the development of effective and sustainable alternatives that meet the needs of children, families, and healthcare professionals. Copyright © 2019, CELOM. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.20344/amp.10437" target="_blank" rel="noreferrer noopener">10.20344/amp.10437</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Acta Médica Portuguesa
Adolescent
Article
Cancelinha C
cancer radiotherapy
Child
Controlled Study
Death
developed country
Female
Hospital Patient
Hospitalization
Human
Lacerda A F
Length Of Stay
Lopes S
Male
Mortality
national health service
Needs Assessment
Newborn
nonparametric test
October 2019 List
Oliveira G
Outpatient
Palliative Care
Palliative Therapy
pediatric patient
Portugal
Radiotherapy
Retrospective Study
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 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
August 2019 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2019-rcpch.452" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2019-rcpch.452</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
Rapid response physiotherapy service in patients with life limiting conditions
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; female; human; male; controlled study; clinical article; quality of life; conference abstract; hospital admission; hospital bed; hospitalization; lower respiratory tract infection; physiotherapist; physiotherapy; risk assessment; sample size
Creator
An entity primarily responsible for making the resource
Michael A; Milner S; Griffin H
Description
An account of the resource
Background Children with chronic illness and life limiting conditions are often more prone to respiratory illnesses due to problems with increased secretions and reduced ability to clear them. The aim of rapid response physiotherapists (RRP) in this patient demographic is to reduce frequency of lower respiratory tract infections and ultimately A and E attendances and admission to hospital. Methods We evaluated A and E attendances, hospital admissions and bed days for patients with life limiting conditions felt to be at risk of recurrent lower respiratory tract infections before and after the introduction of a RRP service. Results 10 children were eligible for inclusion in analysis before and 15 children were identified after the introduction of a RRP. A and E attendances before and after RRP (per patient per year) were 2.5 and 1.8 respectively. Hospital admissions were 1.4 admissions per patient per year in both groups. Length of hospital stay, or bed days had the biggest reduction between groups with 13.4 (days per patient per year) before and 4.8 after RRP. Conclusions We have shown that with the introduction of an RRP the number of A and E attendances and hospital bed days has reduced in absolute terms. Whilst the difference is only small, reduction in hospital contact in a cohort where quality of life is of upmost importance is paramount. To truly analyse this data statistically a larger sample size is needed.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2019-rcpch.452" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-rcpch.452</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Archives of Disease in Childhood
August 2019 List
Child
Clinical Article
conference abstract
Controlled Study
Female
Griffin H
Hospital Admission
hospital bed
Hospitalization
Human
lower respiratory tract infection
Male
Michael A
Milner S
physiotherapist
Physiotherapy
Quality Of Life
Risk Assessment
Sample Size
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
May 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
May 2019 List
URL Address
<a href="http://doi.org/10.1016/j.anpedi.2019.02.001" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.anpedi.2019.02.001</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
Hospital admissions into paediatric palliative care: A retrospective study
Publisher
An entity responsible for making the resource available
Anales de Pediatria.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; human; female; male; palliative therapy; major clinical study; Palliative care; article; death; hospitalization; retrospective study; patient care; pediatric hospital; hospice care; hospital admission; gastrostomy; Hospice care; Hospitalisation; Paediatric hospitals; respiratory system
Creator
An entity primarily responsible for making the resource
de Noriega I; Barcelo M; Perez M A; Puertas V; Garcia-Salido A; Martino R
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.anpedi.2019.02.001" target="_blank" rel="noreferrer noopener">10.1016/j.anpedi.2019.02.001</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).
Description
An account of the resource
Introduction: Patients may be admitted to hospital by paediatric palliative care units (PPCU) for different reasons, due to their different needs and clinical problems. The objective of this study is to present the data of patients admitted to the PPCU of the Autonomous Community of Madrid. Method(s): Descriptive retrospective study was conducted by reviewing the clinical records of the PPCU between January 2011 and December 2016. Result(s): Of 499 patients attended in this period, 166 (33%) were admitted to hospital at some point, generating a total of 314 episodes. Respiratory problems (34%) were the main cause of admission. Gastrostomy intervention (23 patients) was the commonest reason for a surgical admission. In this period, 46 patients died during hospitalisation. The highest frequencies of death, according to the admission cause, were respiratory problems (18 out 46) and end-of-life care (11 out 46). More than half (59%) of admissions lasted less than 7 days and 88% were 15 days or less. Conclusion(s): The causes and characteristics of the hospital admissions at a PPCU are heterogeneous, with respiratory problems being the most common cause of admission. The duration of the hospitalisation appears to be similar to that described for acute palliative care units. The creation of a specific PPCU that can refer their patients for hospital admission might help to improve continuity of care.
2019
Anales de Pediatria.
Article
Barcelo M
Child
de Noriega Í
Death
Female
García-Salido A
Gastrostomy
Hospice Care
Hospital Admission
Hospitalisation
Hospitalization
Human
Major Clinical Study
Male
Martino R
May 2019 List
Paediatric hospitals
Palliative Care
Palliative Therapy
Patient Care
Pediatric Hospital
Perez M A
Puertas V
Respiratory System
Retrospective Study
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.269" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1016/j.jpainsymman.2018.12.269</a>
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
Access to Pediatric Palliative Care in the Neonatal Intensive Care Unit by Minorities and Rural-Dwellers in the Deep South: Patterns of Care from 2009-2017 (S816)
Publisher
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
2019
Subject
The topic of the resource
infant; hospice; mortality; Mississippi; Alabama; palliative therapy; major clinical study; retrospective study; Caucasian; neonatal intensive care unit; prematurity; time of death; conference abstract; medical record review; human; child; female; male; controlled study; hospitalization; resuscitation; statistics; medicaid; data analysis software; Louisiana; African American; hospitalized infant; travel
Creator
An entity primarily responsible for making the resource
Currie E; Wolfe J; Boss R; Ejem D; Perna S; Dionne-Odom J; Buckingham S; McKillip K; Bakitas M
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.269" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.269</a>
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).
Description
An account of the resource
Objectives: 1. Describe patterns of pediatric palliative care and care disparities in neonatal intensive care unit (NICU) patients and families hospitalized in the Deep South (Alabama, Louisiana, and Mississippi). 2. Describe implications for practice related to current trends of pediatric palliative care use in the NICU and implications for future research. Original Research Background: Pediatric mortality is the highest in the first year of life. In 2013, 23,446 infants died in the U.S. Access to timely pediatric palliative care (PPC) services are limited for seriously ill infants and their families in the U. S. Deep South. Patterns of PPC in the neonatal intensive care unit (NICU) and the extent of PPC disparities in the Deep South are unknown. Research Objectives: Examine racial and geographical differences in pediatric palliative care (PPC) consultation for seriously ill infants in the neonatal intensive care unit.
2019
African American
Alabama
Bakitas M
Boss R
Buckingham S
Caucasian
Child
conference abstract
Controlled Study
Currie E
Data Analysis Software
Dionne-Odom J
Ejem D
Female
Hospice
Hospitalization
hospitalized infant
Human
Infant
Journal of Pain and Symptom Management
Louisiana
Major Clinical Study
Male
March 2019 List
McKillip K
Medicaid
Medical Record Review
Mississippi
Mortality
Neonatal Intensive Care Unit
Palliative Therapy
Perna S
Prematurity
Resuscitation
Retrospective Study
Statistics
time of death
travel
Wolfe J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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.26895" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1002/pbc.26895</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
Illness and end-of-life experiences of children with cancer who receive palliative care
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
hospice; Child; Palliative Care; death; Life Change Events; artificial ventilation; personal experience; palliative therapy; major clinical study; retrospective study; childhood cancer; hospital patient; Only Child; cohort analysis; cost effectiveness analysis; human; article; child; female; male; controlled study; quality of life; hospitalization; resuscitation; intensive care unit; invasive procedure; experimental therapy; cancer susceptibility; cancer center; data extraction; phase 1 clinical trial
Creator
An entity primarily responsible for making the resource
Kaye EC; Gushue CA; DeMarsh S; Jerkins J; Sykes A; Lu Z; Snaman JM; Blazin L; Johnson LM; Levine DR; Morrison RR; Baker JN
Description
An account of the resource
Background: The field of pediatric palliative oncology is newly emerging. Little is known about the characteristics and illness experiences of children with cancer who receive palliative care (PC). Methods: A retrospective cohort study of 321 pediatric oncology patients enrolled in PC who died between 2011 and 2015 was conducted at a large academic pediatric cancer center using a comprehensive standardized data extraction tool. Results: The majority of pediatric palliative oncology patients received experimental therapy (79.4%), with 40.5% enrolled on a phase I trial. Approximately one-third received cancer-directed therapy during the last month of life (35.5%). More than half had at least one intensive care unit hospitalization (51.4%), with this subset demonstrating considerable exposure to mechanical ventilation (44.8%), invasive procedures (20%), and cardiopulmonary resuscitation (12.1%). Of the 122 patients who died in the hospital, 44.3% died in the intensive care unit. Patients with late PC involvement occurring less than 30 days before death had higher odds of dying in the intensive care unit over the home/hospice setting compared to those with earlier PC involvement (OR: 4.7, 95% CI: 2.47-8.97, P < 0.0001). Conclusions: Children with cancer who receive PC experience a high burden of intensive treatments and often die in inpatient intensive care settings. Delayed PC involvement is associated with increased odds of dying in the intensive care unit. Prospective investigation of early PC involvement in children with high-risk cancer is needed to better understand potential impacts on cost-effectiveness, quality of life, and delivery of goal concordant care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.1002/pbc.26895" target="_blank" rel="noreferrer noopener">10.1002/pbc.26895</a>
2018
Article
Artificial Ventilation
Baker JN
Blazin L
cancer center
cancer susceptibility
Child
Childhood Cancer
Cohort Analysis
Controlled Study
Cost Effectiveness Analysis
data extraction
Death
DeMarsh S
Experimental Therapy
Female
Gushue CA
Hospice
Hospital Patient
Hospitalization
Human
Intensive Care Unit
invasive procedure
Jerkins J
Johnson LM
Kaye EC
Levine DR
Life Change Events
Lu Z
Major Clinical Study
Male
Morrison RR
Oncology 2018 List
Only Child
Palliative Care
Palliative Therapy
Pediatric Blood and Cancer
Personal Experience
phase 1 clinical trial
Quality Of Life
Resuscitation
Retrospective Study
Snaman JM
Sykes A