1
40
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2022 Special Edition 4 - 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
2022 Special Edition Low Resource Setting Issue
URL Address
<a href="http://doi.org/10.1590/1678-4324-2022210615" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1590/1678-4324-2022210615</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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Overview of Perinatal Palliative Care in Brazil
Publisher
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Brazilian Archives of Biology and Technology
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
quality of life; palliative care; Brazil; mothers; epidemiology; pregnancy; Chordata; eukaryotes; health care; Hominidae; Homo; human diseases; Latin America; mammals; man; primates; South America; vertebrates; birth; America; animals; neonates; epidemics; gestation; women; guidelines; recommendations; birth defects; Community of Portuguese Language Countries; congenital abnormalities; congenital malformations; drug abusers; drug users; high Human Development Index countries; malformations; microcephaly; upper-middle income countries
Creator
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Saffi Junior MC; de Moraes AMSM; Favero GM
Description
An account of the resource
Significant attention to palliative care in terminally ill patients has only been effective in Brazil since the year 2000, although there have been isolated actions since the 1980s. When the case involves fetuses or neonates unable to cure, communication and care with the family members only received attention and effective organization starting in 2017. Notably in the years 2015 and 2016 there was an epidemic of microcephaly and along with the persistent crisis of drug users has raised the indices of malformations to a level higher than 3% of the world average. Here we aim the evaluation of: (a) social, educational and spiritual profile of the mothers; (b) structure of the specific teams related to palliative care in neonatology; (c) recommendations and protocols currently used in the country. The method used is an electronic retrospective on databases and government data; evaluation of the location and composition of palliative care teams in the country. The data found clearly point out that for Brazilian women, the characteristics of regionality in the country, educational level, religiousness and quality of life directly influence pregnancy and the acceptance or not of the possibility of death, directly influencing perinatal palliative care, which, by the way, is still developing methodologies for this type of action.
Identifier
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<a href="http://doi.org/10.1590/1678-4324-2022210615" target="_blank" rel="noreferrer noopener">10.1590/1678-4324-2022210615</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
2022 Special Edition Low Resource Setting Issue
America
Animals
Birth
Birth defects
Brazil
Brazilian Archives of Biology and Technology
Chordata
Community of Portuguese Language Countries
Congenital Abnormalities
Congenital malformations
de Moraes AMSM
drug abusers
drug users
epidemics
Epidemiology
Eukaryotes
Favero GM
gestation
Guidelines
Health Care
high Human Development Index countries
Hominidae
Homo
Human Diseases
Latin America
Malformations
Mammals
Man
microcephaly
Mothers
Neonates
Palliative Care
Pregnancy
Primates
Quality Of Life
Recommendations
Saffi Junior MC
South America
upper-middle income countries
Vertebrates
Women
-
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/10.1371/journal.pone.0210574" target="_blank" rel="noreferrer noopener">http://doi.org/10.1371/journal.pone.0210574</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
Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: a population-based retrospective cohort study (2003-2014)
Publisher
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PLoS ONE
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; adolescent; adult; article; child; cohort analysis; female; human; major clinical study; male; palliative therapy; retrospective study; controlled study; palliative care; school child; Ontario; aged; health insurance; infant; young adult; age; America; amyotrophic lateral sclerosis; amyotrophic lateral sclerosis/ep [Epidemiology]; animals; APEC countries; Canada; childhood disease/ep [Epidemiology]; childhood diseases; Chordata; cohort studies; Commonwealth of Nations; data base; death rate; Developed Countries; disease course; disease prevalence; disease progression; eukaryotes; health care; Hominidae; Homo; human diseases; incidence; International Classification of Diseases; mammals; man; middle aged; mortality; mortality rates; muscles; neuromuscular disease/ep [Epidemiology]; neuromuscular diseases; neuromuscular disorders; North America; OECD Countries; planning; population research; preschool child; prevalence; primates; retrospective studies; sclerosis; spinal muscular atrophy/ep [Epidemiology]; spine; survival; trend study; trends; vertebrates
Creator
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Rose L; McKim D; Leasa D; Nonoyama M; Tandon A; Bai Y; Amin R; Katz S; Goldstein R; Gershon A
Description
An account of the resource
Background: Population trends of disease prevalence and incidence over time measure burden of disease and inform healthcare planning. Neuromuscular disorders (NMD) affect muscle and nerve function with varying degrees of severity and disease progression. Objective: Using health administrative databases we described trends in incidence, prevalence, and mortality of adults and children with NMD. We also explored place of death and use of palliative care. Methods: Population-based (Ontario, Canada) cohort study (2003 to 2014) of adults and children with NMD identified using International Classification of Disease and health insurance billing codes within administrative health databases. Results: Adult disease prevalence increased on average per year by 8% (95% confidence interval (CI) 6% to 10%, P<.001), with the largest increase in adults 18-39 years. Childhood disease prevalence increased by 10% (95% CI 8% to 11%, P<.0001) per year, with the largest increase in children 0 to 5 years. Prevalence increased across all diagnoses except amyotrophic lateral sclerosis and spinal muscular atrophy for adults and all diagnoses for children. Adult incidence decreased by 3% (95% CI -4% to -2%, P<.0001) but incidence remained stable in children. Death occurred in 34,336 (18.5%) adults; 21,236 (61.8%) of whom received palliative care. Death occurred in 1,009 (5.6%) children; 507 (50.2%) of whom received palliative care. Mortality decreased over time in adults (odds ratio (OR) 0.86, 95% CI 0.86-0.87, P<.0001) and children (OR 0.79, 95% CI 0.76-0.82, P<.0001). Use of palliative care over time increased for adults (OR 1.18, 95% CI 1.09 to 1.28, P <.0001) and children (OR 1.22, 95% CI 1.20 to 1.23, P <.0001). Conclusions: In both adults and children, NMD prevalence is rising and mortality rates are declining. In adults incidence is decreasing while in children it remains stable. This confirms on a population-based level the increased survival of children and adults with NMD.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1371/journal.pone.0210574" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0210574</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
Adult
Age
Aged
America
Amin R
amyotrophic lateral sclerosis
amyotrophic lateral sclerosis/ep [Epidemiology]
Animals
APEC countries
Article
August 2019 List
Bai Y
Canada
Child
childhood disease/ep [Epidemiology]
childhood diseases
Children
Chordata
Cohort Analysis
Cohort Studies
Commonwealth of Nations
Controlled Study
Data Base
death rate
Developed Countries
Disease Course
disease prevalence
Disease Progression
Eukaryotes
Female
Gershon A
Goldstein R
Health Care
health Insurance
Hominidae
Homo
Human
Human Diseases
Incidence
Infant
International Classification of Diseases
Katz S
Leasa D
Major Clinical Study
Male
Mammals
Man
McKim D
Middle Aged
Mortality
mortality rates
muscles
neuromuscular disease/ep [Epidemiology]
Neuromuscular Diseases
Neuromuscular Disorders
Nonoyama M
North America
OECD Countries
Ontario
Palliative Care
Palliative Therapy
planning
PLoS One
Population Research
Preschool Child
Prevalence
Primates
Retrospective Studies
Retrospective Study
Rose L
School Child
sclerosis
spinal muscular atrophy/ep [Epidemiology]
Spine
Survival
Tandon A
trend study
Trends
Vertebrates
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
n/a
URL Address
<a href="http://www.rmu.org.uy/revista/33/1/2/en/4/abstract/" target="_blank" rel="noreferrer">http://www.rmu.org.uy/revista/33/1/2/en/4/abstract/</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
Directives of adequacy of the therapeutic effort in children. Experience of the Pediatric Palliative Care Unit of Pereira Rossell Hospital Center (2009-2015)
Publisher
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Revista Medica Del Uruguay
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
America; Animals; Children; Choice; Chordata; Decision Making; Developing Countries; Eukaryotes; Health Care; Hominidae; Homo; Human Diseases; Latin America; Mammals; Man; Paediatrics; Palliative Care; Pediatrics; Primates; South America; Threshold Countries; Uruguay; Vertebrates
Creator
An entity primarily responsible for making the resource
Pereira I; Koziol S; Mauvezin J; Notejane M; Bernadá M
Description
An account of the resource
Introduction: In certain patients, "directives on the adequacy of therapeutic effort" (DAET) known as advanced care planning are important tools to align medical care to patient's and family's objectives of care. Purpose: To describe characteristics of patients assisted by a paediatric palliative care unit (PPCU) with DAET and the degree in which they were respected in children who died. Methods: Descriptive, retrospective study. Period: 1/January/2009-31/December/2015. Population: children assisted by the UCPP with DAET. Variables: age, pathology, prosthesis carried, primary caregiver, participants in decision-making process, form of registration, measures "TO PERFORM" and "NOT TO PERFORM", time between recruitment by PPCU/DAET, death, time between DAET/death, place of death, DAET accomplished. Results: DAET was found in 11.8% (73/618) of patients; median age: 3.8 years old; 75.3% had severe neurological impairment; 84.9% carried at least one prosthesis; primary caregiver: mother 72.6%. Participants in decision-making process: healthcare team and primary caregiver 94.5%. Registration in specific document: 60.3%. DAET included: "TO PERFORM": analgesia and comfort care: 100%, admission to moderate care: 86.3% and "NOT TO PERFORM": cardiopulmonary resuscitation: 100%, admission to intensive care: 86.3%, mechanical ventilator assistance 83.5%. Time between recruitment by PPCU/DAET: median: 13 months. 53.4% (39/73) died, in the hospital 76.9%. Time between DAET/death, median: 7 months. DAET were followed in 97.4%. Discussion and conclusions: 11.8% of children assisted by PPCU had DAET. Decision-making was shared between health providers and caregivers in most cases. DAET were respected in almost all children who had them and died.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://www.rmu.org.uy/revista/33/1/2/en/4/abstract/" target="_blank" rel="noreferrer">[direct link; no identifier]</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
America
Animals
Bernadá M
Children
Choice
Chordata
Decision Making
Developing Countries
Eukaryotes
Health Care
Hominidae
Homo
Human Diseases
Koziol S
Latin America
Mammals
Man
Mauvezin J
Notejane M
Paediatrics
Palliative Care
Pediatrics
Pereira I
Primates
Revista Medica Del Uruguay
South America
Threshold Countries
Uruguay
Vertebrates