1
40
8
-
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 2017 List
URL Address
<a href="http://doi.org/10.1016/j.jped.2017.07.014" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jped.2017.07.014</a>
Notes
<p>Using Smart Source Parsing<br />Date of Publication: 2017</p>
Dublin Core
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Title
A name given to the resource
Pediatric chronic patients at outpatient clinics: A study in a Latin American University Hospital
Publisher
An entity responsible for making the resource available
Jornal De Pediatria.
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Chronic Patient; Emergency Ward; Hospital Admission; Hospitalization; Outpatient; University Hospital; Adolescent; Adult; Cardiology; Child; Controlled Study; Cross Sectional Study; Death; Emergency Health Service; Endocrinology; Female; Hematology; Human; Intensive Care Unit; Kidney Transplantation; Major Clinical Study; Male; Nephrology; Neurology; Oncology; Pain; Physician; Psychiatry; Rheumatology
Creator
An entity primarily responsible for making the resource
Alveno RA; Miranda CV; Passone CG; Waetge AR; Hojo ES; Farhat SCL; Odone-Filho V; Tannuri U; Carvalho WB; Carneiro-Sampaio M; Silva CA
Description
An account of the resource
Objective: To describe the characteristics of children and adolescentes with chronic diseases of outpatient clinics at a tertiary university hospital. Methods: A cross-sectional study was performed with 16,237 patients with chronic diseases followed-up in one year. The data were collected through the electronic system, according to the number of physician appointments in 23 pediatric specialties. Patients were divided in two groups: children (0-9 years) and adolescents (10-19 years). Early (10-14 years) and late (15-19 years) adolescent groups were also analyzed. Results: Of the total sample, 56% were children and 46% were adolescents. The frequencies of following pediatric specialties were significantly higher in adolescents when compared with children: cardiology, endocrinology, hematology, nephrology/renal transplantation, neurology, nutrology, oncology, palliative and pain care, psychiatry, and rheumatology (p <. 0.05). The frequencies of emergency service visits (30% vs. 17%, p <. 0.001), hospitalizations (23% vs. 11%, p <. 0.001), intensive care unit admissions (6% vs. 2%, p <. 0.001), and deaths (1% vs. 0.6%, p = 0.002) were significantly lower in adolescents than in children. However, the number of physician appointments (>=13) per patient was also higher in the adolescent group (5% vs. 6%, p = 0.018). Further analysis comparison between early and late adolescents revealed that the first group had significantly more physician appointments (35% vs. 32%, p = 0.025), and required more than two pediatric specialties (22% vs. 21%, p = 0.047). Likewise, the frequencies of emergency service visits (19% vs. 14%, p <. 0.001) and hospitalizations (12% vs. 10%, p = 0.035) were higher in early adolescents. Conclusions: This study evaluated a large population in a Latin American hospital and suggested that early adolescents with chronic diseases required many appointments, multiple specialties and hospital admissions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jped.2017.07.014" target="_blank" rel="noreferrer">10.1016/j.jped.2017.07.014</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adolescent
Adult
Alveno RA
Cardiology
Carneiro-Sampaio M
Carvalho WB
Child
Chronic Patient
Controlled Study
Cross Sectional Study
Death
December 2017 List
Emergency Health Service
Emergency Ward
Endocrinology
Farhat SCL
Female
Hematology
Hojo ES
Hospital Admission
Hospitalization
Human
Intensive Care Unit
Jornal De Pediatria.
Kidney Transplantation
Major Clinical Study
Male
Miranda CV
Nephrology
Neurology
Odone-Filho V
Oncology
Outpatient
Pain
Passone CG
Physician
Psychiatry
Rheumatology
Silva CA
Tannuri U
University Hospital
Waetge AR
-
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 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Training Pediatric Fellows In Palliative Care: A Comparison Of Simulation-based Training And Didactic Education
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
2017
Subject
The topic of the resource
Curriculum; Palliative Therapy; Simulation; Cardiology; Child; Clinical Trial; Comfort; Communication Skill; Controlled Clinical Trial; Controlled Study; Family; Female; Hematology; Human; Human Versus Animal Comparison; Male; Medical Education; Neonatology; Nonhuman; Oncology; Physician; Pilot Study; Resuscitation; Single Blind Procedure
Creator
An entity primarily responsible for making the resource
Brock K; Cohen H; Sourkes B; Good J; Halamek L
Description
An account of the resource
Background: Although palliative care (PC) communication skills can be learned through trial and error, pediatric fellows have few opportunities to practice communication, and learning by doing may be harmful for families. Despite these issues and recommendations from professional societies, most fellowship programs either lack formal training or provide only lecture-based PC education. Simulation-based training has been successful in other high-stakes communication encounters, and has the potential to change PC education. Objectives: In this pilot study,we assessed: (1) the relative effectiveness of simulation-based vs didactic education, (2) communication skill retention, and (3) effect on PC consultation rates. Design/Method: Thirty-five pediatric fellows in hematology/oncology, cardiology, critical care, and neonatology at two institutions enrolled: 17 in the simulation-based group (single institution) and 18 in the didactic education group (second institution). Simulation-based subjects participated in a 2-day program over 3 months (three simulations and videotaped PC panel) where scenarios focused on: introducing PC, discussing goals of care and resuscitation preferences, and mediating disagreement between the family and medical team. Didactic-education subjects received written education designed to be similar in content and time. (1) Fellow selfassessments in PC comfort, knowledge, and adequacy of medical education, were measured at baseline, post-intervention and three months; mean between-group differences for each outcome measure were assessed. (2) Two blinded external reviewers rated each simulation-group fellow's encounters on nine communication domains. Within-group changes over time were assessed. (3) The simulation-based site's PC consultation rate was compared in the six months pre- and post-intervention. Results: Compared to the didactic group, subjects in the simulation-based group improved in PC comfort/ self-efficacy (16.4 vs 6.1, DELTA10.3, p = 0.003) and perceived adequacy of medical education (7.4 vs 0.4, DELTA7.1, p<0.001). Both groups had improved PC knowledge; this was not different between groups (1.1 vs 1.8, DELTA-0.7, p = 0.20). Reviewers noted non-sustained improvement in four domains: relationship building (p = 0.01), opening discussion (p = 0.03), gathering information (p = 0.01), and communicating accurate information (p = 0.04). PC consultation rate increased 64%, an improvement when normalized to average daily census (p = 0.04). Simulation-group fellows more strongly agreed that they would use the education in practice (p = 0.04), and recommended that educational methodology (p = 0.004). Conclusion: Well-trained physicians are necessary to providing high quality PC. This simulation-based curriculum is an effective method for improving PC comfort, education, and consults, although it does not lead to sustained improvements in communication competence or knowledge. More frequent, deliberate practice is likely needed to lead to sustained improvements in communication competence.
Identifier
An unambiguous reference to the resource within a given context
10.1002/pbc.26591
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Brock K
Cardiology
Child
Clinical Trial
Cohen H
Comfort
Communication Skill
Controlled Clinical Trial
Controlled Study
Curriculum
Family
Female
Good J
Halamek L
Hematology
Human
Human Versus Animal Comparison
Male
Medical Education
Neonatology
Nonhuman
October 2017 List
Oncology
Palliative Therapy
Pediatric Blood and Cancer
Physician
Pilot Study
Resuscitation
Simulation
Single Blind Procedure
Sourkes B
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1159/000006815" target="_blank" rel="noreferrer">http://doi.org/10.1159/000006815</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
Decreased levels of beta-endorphin in circulating mononuclear leukocytes from patients with acute myocardial infarction
Publisher
An entity responsible for making the resource available
Cardiology
Date
A point or period of time associated with an event in the lifecycle of the resource
1998
Subject
The topic of the resource
Female; Humans; Male; Middle Aged; Biomarkers of Pain; Biomarkers Reference List; Leukocytes; beta-Endorphin/blood/immunology; Myocardial Infarction/blood; C-Reactive Protein/analysis; Mononuclear/metabolism
Creator
An entity primarily responsible for making the resource
Buratti T; Schratzberger P; Dunzendorfer S; Manfreda SE; Pechlaner C; Joannidis M; Sacerdote P; Panerai AE; Wiedermann CJ
Description
An account of the resource
Lymphocytes can be activated to produce and release opioid peptides. We investigated the levels of immunoreactive beta-endorphin in peripheral blood mononuclear cells from 11 patients with acute myocardial infarction. The concentrations of beta-endorphin in mononuclear leukocytes of 30.2 +/- 6.9 pg/10(6) cells on admission were in the normal range of 20-40 pg/10(6) cells and decreased significantly to 6.9 +/- 1.9 pg/10(6) cells after 48 h (p < 0.05). Decreased levels of mononuclear leukocyte-associated beta-endorphin in acute myocardial infarction may be due to the release of endogenous opioid after stimulation by stress and acute-phase reactants and play a role in inflammation and pain.
1998
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1159/000006815" target="_blank" rel="noreferrer">10.1159/000006815</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
1998
Backlog
beta-Endorphin/blood/immunology
Biomarkers of Pain
Biomarkers Reference List
Buratti T
C-Reactive Protein/analysis
Cardiology
Dunzendorfer S
Female
Humans
Joannidis M
Journal Article
Leukocytes
Male
Manfreda SE
Middle Aged
Mononuclear/metabolism
Myocardial Infarction/blood
Panerai AE
Pechlaner C
Sacerdote P
Schratzberger P
Wiedermann CJ
-
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
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Title
A name given to the resource
Parent-Reported Outcomes of Prognostic Communication in Hospitalized Children with Advanced Heart Disease (S762)
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
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>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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
-
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 2016 List
URL Address
<a href="http://adc.bmj.com/content/101/10/984.long" target="_blank" rel="noreferrer">http://adc.bmj.com/content/101/10/984.long</a>
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Title
A name given to the resource
The Importance Of Early Involvement Of Paediatric Palliative Care For Patients With Severe Congenital Heart Disease.
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
2016
Subject
The topic of the resource
Cardiology; Palliative Care; Advance Care Planning; Congenital Heart Disease; End-of-life Care
Creator
An entity primarily responsible for making the resource
S Bertaud; Lloyd DF; Laddie J; Razavi R
Description
An account of the resource
Growing numbers of patients with severe congenital heart disease (CHD) are surviving into late childhood and beyond. This increasingly complex patient group may experience multiple formidable and precarious interventions, lifelong morbidity and the very real risk of premature death on many occasions throughout their childhood. In this paper, we discuss the advantages of a fully integrated palliative care ethos in patients with CHD, offering the potential for improved symptom control, more informed decision-making and enhanced support for patients and their families throughout their disease trajectory. These core principles may be delivered alongside expert cardiac care via non-specialists within pre-existing networks or via specialists in paediatric palliative care when appropriate. By broaching these complex issues early-even from the point of diagnosis-an individualised set of values can be established around not just end-of-life but also quality-of-life decisions, with clear benefits for patients and their families regardless of outcome.
Identifier
An unambiguous reference to the resource within a given context
DOI: <a href="https://doi.org/10.1136/archdischild-2015-309789" target="_blank" rel="noreferrer">10.1136/archdischild-2015-309789</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).
2016
Advance Care Planning
April 2016 List
Archives of Disease in Childhood
Cardiology
Congenital Heart Disease
End-of-life Care
Laddie J
Lloyd DF
Palliative Care
Razavi R
S Bertaud
-
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 2016 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
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Evaluating Hospice And Palliative Medicine Education In Pediatric Training Programs.
Publisher
An entity responsible for making the resource available
American Journal Of Hospice And Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Ccm; Nicu; Cardio; Cardiology; Critical Care Medicine; Education; Hematology; Heme/onc; Hospice; Neonatology; Oncology; Palliative Medicine; Pediatric Subspecialty
Creator
An entity primarily responsible for making the resource
Singh AL; Klick JC; McCracken CE; Hebbar KB
Description
An account of the resource
BACKGROUND:
Hospice and Palliative Medicine (HPM) competencies are of growing importance in training general pediatricians and pediatric sub-specialists. The Accreditation Council for Graduate Medical Education (ACGME) emphasized pediatric trainees should understand the "impact of chronic disease, terminal conditions and death on patients and their families." Currently, very little is known regarding pediatric trainee education in HPM.
METHODS:
We surveyed all 486 ACGME-accredited pediatric training program directors (PDs) - 200 in general pediatrics (GP), 57 in cardiology (CARD), 64 in critical care medicine (CCM), 69 in hematology-oncology (ONC) and 96 in neonatology (NICU). We collected training program's demographics, PD's attitudes and educational practices regarding HPM.
RESULTS:
The complete response rate was 30% (148/486). Overall, 45% offer formal HPM curriculum and 39% offer a rotation in HPM for trainees. HPM teaching modalities commonly reported included conferences, consultations and bedside teaching. Eighty-one percent of all respondents felt that HPM curriculum would improve trainees' ability to care for patients. While most groups felt that a HPM rotation would enhance trainees' education [GP (96%), CARD (77%), CCM (82%) and ONC (95%)], NICU PDs were more divided (55%; p < 0.05 for all comparisons vs. NICU).
CONCLUSION:
While most programs report perceived benefit from HPM training, there remains a paucity of opportunities for pediatric trainees. Passive teaching methods are frequently utilized in HPM curricula with minimal diversity in methods utilized to teach HPM. Opportunities to further emphasize HPM in general pediatric and pediatric sub-specialty training remains.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1177/1049909116643747
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).
2016
American Journal of Hospice and Palliative Medicine
April 2016 List
Cardio
Cardiology
Ccm
Critical Care Medicine
Education
Hebbar KB
Hematology
Heme/onc
Hospice
Klick JC
McCracken CE
Neonatology
Nicu
Oncology
Palliative Medicine
Pediatric Subspecialty
Singh AL
-
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 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
July 2020 List
URL Address
<a href="http://doi.org/10.1016/j.cjca.2020.04.041" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.cjca.2020.04.041</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Palliative care?! But this child's not dying: The burgeoning partnership between pediatric cardiology and palliative care
Publisher
An entity responsible for making the resource available
The Canadian journal of cardiology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
cardiology; pediatric cardiology; pediatric palliative care
Creator
An entity primarily responsible for making the resource
Wan A; Weingarten K; Rapoport A
Description
An account of the resource
The field of pediatric cardiology has witnessed major changes over the past few decades that have considerably altered patient outcomes, including decreasing mortality rates for many previously untreatable conditions. Despite this, some pediatric cardiology programs are increasingly choosing to partner with their institutional palliative care teams. Why is this? The field of palliative care has also experienced significant shifts over a similar period of time. Today's palliative care is focused on improving quality of life, for any patient with a serious or life-threatening condition, regardless of where they might be on their disease trajectory. Research has clearly demonstrated that improved outcomes can be achieved for a variety of patient cohorts through early integration of palliative care; recent evidence suggests that the same may be true in pediatric cardiology. All pediatric cardiologists need to be aware of what pediatric palliative care has to offer their patients, especially those who are not actively dying. This manuscript reviews the evolution of palliative care and provides a rationale for its integration into the care of children with advanced heart disease. Readers will gain a sense of how and when to introduce palliative care to their families, as well as insight into what pediatric palliative care teams have to offer. Additional research is required to better delineate optimal partnership between palliative care and pediatric cardiology so that we may promote maximal quality of life of patients concurrently with continued efforts to push the boundaries of quantity of life. Copyright © 2020. Published by Elsevier Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.cjca.2020.04.041" target="_blank" rel="noreferrer noopener">10.1016/j.cjca.2020.04.041</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Cardiology
July 2020 List
Pediatric Cardiology
Pediatric Palliative Care
Rapoport A
The Canadian Journal Of Cardiology
Wan A
Weingarten 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
September 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2018 List
URL Address
<a href="http://doi.org/10.1186/s12887-018-1021-2" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12887-018-1021-2</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
Patterns of paediatric end-of-life care: A chart review across different care settings in Switzerland
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
2018
Subject
The topic of the resource
terminal care; human; child; female; male; cohort analysis; neurology; newborn; article; neonatology; home care; major clinical study; retrospective study; child care; Switzerland; oncology; resuscitation; medical record review; child death; life sustaining treatment; treatment withdrawal; health care utilization; hospital admission; 103-90-2 (paracetamol); paracetamol; adolescent; infant; intensive care unit; cause of death; length of stay; drug use; cardiology; community care; invasive procedure; narcotic analgesic agent
Creator
An entity primarily responsible for making the resource
Zimmermann K; Cignacco E; Engberg S; Ramelet AS; von der Weid N; Eskola K; Bergstraesser E; Ansari M; Aebi C; Baer R; Popovic MB; Bernet V; Brazzola P; Bucher HU; Buder R; Cagnazzo S; Dinten B; Dorsaz A; Elmer F; Enriquez R; Fahrni-Nater P; Finkbeiner G; Frey B; Frey U; Greiner J; Hassink RI; Keller S; Kretschmar O; Kroell J; Laubscher B; Leibundgut K; Malaer R; Meyer A; Stuessi C; Nelle M; Neuhaus T; Niggli F; Perrenoud G; Pfammatter JP; Plecko B; Rupf D; Sennhauser F; Stade C; Steinlin M; Stoffel L; Thomas K; Vonarburg C; von Vigier R; Wagner B; Wieland J; Wernz B
Description
An account of the resource
Background: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of paediatric end-of-life care. The aim of this study was to comprehensively describe, explore and compare current practices in paediatric end-of-life care in four distinct diagnostic groups across healthcare settings including all relevant levels of healthcare providers in Switzerland. Methods: In this nationwide retrospective chart review study, data from paediatric patients who died in the years 2011 or 2012 due to a cardiac, neurological or oncological condition, or during the neonatal period were collected in 13 hospitals, two long-term institutions and 10 community-based healthcare service providers throughout Switzerland. Results: Ninety-three (62%) of the 149 reviewed patients died in intensive care units, 78 (84%) of them following withdrawal of life-sustaining treatment. Reliance on invasive medical interventions was prevalent, and the use of medication was high, with a median count of 12 different drugs during the last week of life. Patients experienced an average number of 6.42 symptoms. The prevalence of various types of symptoms differed significantly among the four diagnostic groups. Overall, our study patients stayed in the hospital for a median of six days during their last four weeks of life. Seventy-two patients (48%) stayed at home for at least one day and only half of those received community-based healthcare. Conclusions: The study provides a wide-ranging overview of current end-of-life care practices in a real-life setting of different healthcare providers. The inclusion of patients with all major diagnoses leading to disease- and prematurity-related childhood deaths, as well as comparisons across the diagnostic groups, provides additional insight and understanding for healthcare professionals. The provision of specialised palliative and end-of-life care services in Switzerland, including the capacity of community healthcare services, need to be expanded to meet the specific needs of seriously ill children and their families.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12887-018-1021-2" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1021-2</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
103-90-2 (paracetamol)
2018
Adolescent
Aebi C
Ansari M
Article
Baer R
Bergstraesser E
Bernet V
Bmc Pediatrics
Brazzola P
Bucher HU
Buder R
Cagnazzo S
Cardiology
Cause Of Death
Child
Child Care
Child Death
Cignacco E
Cohort Analysis
community care
Dinten B
Dorsaz A
Drug Use
Elmer F
Engberg S
Enriquez R
Eskola K
Fahrni-Nater P
Female
Finkbeiner G
Frey B
Frey U
Greiner J
Hassink RI
Health Care Utilization
Home Care
Hospital Admission
Human
Infant
Intensive Care Unit
invasive procedure
Keller S
Kretschmar O
Kroell J
Laubscher B
Leibundgut K
Length Of Stay
Life Sustaining Treatment
Major Clinical Study
Malaer R
Male
Medical Record Review
Meyer A
narcotic analgesic agent
Nelle M
Neonatology
Neuhaus T
Neurology
Newborn
Niggli F
October 2018 List
Oncology
Paracetamol
Perrenoud G
Pfammatter JP
Plecko B
Popovic MB
Ramelet AS
Resuscitation
Retrospective Study
Rupf D
Sennhauser F
September 2018 List
Stade C
Steinlin M
Stoffel L
Stuessi C
Switzerland
Terminal Care
Thomas K
Treatment Withdrawal
Von der Weid N
von Vigier R
Vonarburg C
Wagner B
Wernz B
Wieland J
Zimmermann K