1
40
10
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Title
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January 2023 List
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January List 2023
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<a href="http://doi.org/10.1038/s41390-022-02370-8" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1038/s41390-022-02370-8</a>
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Incidence of anxiety and depression in children and young people with life-limiting conditions
Publisher
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Pediatric Research
Date
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2022
Subject
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Anxiety; Child; Depression; Young People
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Barker MM; Beresford B; Fraser LK
Description
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BACKGROUND: The aim of this study was to investigate the incidence of anxiety and depression in children and young people with life-limiting conditions. METHODS: A comparative cohort study was conducted, using primary and secondary care data from the Clinical Practice Research Datalink (CPRD) in England. Anxiety and depression codes were identified using diagnostic, symptom and prescription codes. Incidence rates of anxiety and depression were compared across condition groups using Poisson regression, adjusting for sex, age, ethnicity, and deprivation status. RESULTS: A total of 25,313 children and young people were included in the study: 5527 with life-limiting conditions, 6729 with chronic conditions, and 13,057 with no long-term conditions. The incidence of anxiety (IRR(adj): 1.39, 95% CI: 1.09-1.77) and depression (IRR(adj): 1.41, 95% CI: 1.08-1.83) was significantly higher in children and young people with life-limiting conditions, compared to children and young people with no long-term conditions. CONCLUSIONS: The higher incidence of anxiety and depression observed among children and young people with life-limiting conditions highlights the need for psychological support in this population, including further efforts to prevent, identify, and treat anxiety and depression. IMPACT: The analysis of primary and secondary healthcare data from England revealed that the incidence of anxiety and depression was higher among children and young people with life-limiting conditions, compared to those with no long-term conditions. This is the first study to investigate the incidence of anxiety and depression in children and young people with a wide range of life-limiting conditions. The higher incidence of anxiety and depression observed in children and young people with life-limiting conditions highlights the need for psychological support aiming to prevent, identify, and treat anxiety and depression in this population group.
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<a href="http://doi.org/10.1038/s41390-022-02370-8" target="_blank" rel="noreferrer noopener">10.1038/s41390-022-02370-8</a>
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Child
2022
anxiety
Barker MM
Beresford B
Depression
Fraser LK
January List 2023
Pediatric Research
Young People
-
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Title
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April 2022 List
Text
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April 2022 List
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<a href="http://doi.org/10.1038/s41390-022-01975-3" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41390-022-01975-3</a>
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Adult healthcare is associated with more emergency healthcare for young people with life-limiting conditions
Publisher
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Pediatric Research
Date
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2022
Subject
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Adolescent; Adult; Children; Cohort analysis; Diabetes mellitus; Hospital care; Retrospective studies
Creator
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Jarvis S; Flemming K; Richardson G; Fraser L
Description
An account of the resource
Background: Children with life-limiting conditions receive specialist paediatric care in childhood, but the transition to adult care during adolescence. There are concerns about transition, including a lack of continuity in care and that it may lead to increases in emergency hospital visits. Method(s): A retrospective cohort was constructed from routinely collected primary and hospital care records for young people aged 12-23 years in England with (i) life-limiting conditions, (ii) diabetes or (iii) no long-term conditions. Transition point was estimated from the data and emergency inpatient admissions and Emergency Department visits per person-year compared for paediatric and adult care using random intercept Poisson regressions. Result(s): Young people with life-limiting conditions had 29% (95% CI: 14-46%) more emergency inpatient admissions and 24% (95% CI: 12-38%) more Emergency Department visits in adult care than in paediatric care. There were no significant differences associated with the transition for young people in the diabetes or no long-term conditions groups. Conclusion(s): The transition from paediatric to adult healthcare is associated with an increase in emergency hospital visits for young people with life-limiting conditions, but not for young people with diabetes or no long-term conditions. There may be scope to improve the transition for young people with life-limiting conditions. Impact: There is evidence for increases in emergency hospital visits when young people with life-limiting conditions transition to adult healthcare.These changes are not observed for comparator groups - young people with diabetes and young people with no known long-term conditions, suggesting they are not due to other transitions happening at similar ages.Greater sensitivity to changes at transition is achieved through estimation of the transition point from the data, reducing misclassification bias. Copyright © 2022, The Author(s).
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<a href="http://doi.org/10.1038/s41390-022-01975-3" target="_blank" rel="noreferrer noopener">10.1038/s41390-022-01975-3</a>
2022
Adolescent
Adult
April 2022 List
Children
Cohort Analysis
Diabetes Mellitus
Flemming K
Fraser L
Hospital care
Jarvis S
Pediatric Research
Retrospective Studies
Richardson G
-
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February 2022 List
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February 2022 List
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<a href="http://doi.org/10.1038/s41390-021-01909-5" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41390-021-01909-5</a>
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Choiceless options: when hospital-based services represent the only palliative care offering
Publisher
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Pediatric Research
Date
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2021
Subject
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availability; palliative care; pediatric; rural
Creator
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Weaver MS; Lindley LC
Description
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Lack of availability of community-based pediatric palliative care and home-based hospice services for children limits care location options for families. For many families from rural regions, hospital-based care models may be perceived as the only viable choice due to geographic gaps in service coverage. Gaps exist not only in access to these key services but also in service quality without national pediatric service standards. While families from rural regions may express a goal to be home with their child for relational and communal care purposes the current setting of services may limit the feasibility of home-based care. Several potential pediatric systems changes (workforce, finance, policy) have the capacity to create and sustain a care model that allows a child with complex, chronic, or life-limiting diagnoses to experience a home other than the hospital. The existence of community-based pediatric palliative and pediatric home-based hospice services with a sustained workforce and high-quality national standard for children would bolster the ultimate congruence of a family's preference with actual care choices. IMPACT: Families of children with life-limiting diagnoses may express a preference to be home together. Disparities in access to community-based pediatric palliative care and hospice exist for children, particularly in rural regions. These gaps may translate into families experiencing hospital-based settings as the only feasible care model which may result in care escalations and medicalization. Expansion of the community-based workforce and development of pediatric-specific standards for key palliative services would increase home-based care options for families. This paper acknowledges the pediatric palliative and hospice availability crisis in rural regions and urges for improved access to high-quality, community-based services for children.
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<a href="http://doi.org/10.1038/s41390-021-01909-5" target="_blank" rel="noreferrer noopener">10.1038/s41390-021-01909-5</a>
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2021
availability
February 2022 List
Lindley LC
Palliative Care
Pediatric
Pediatric Research
Rural
Weaver MS
-
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February 2022 List
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February 2022 List
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<a href="http://doi.org/10.1038/s41390-021-01396-8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41390-021-01396-8</a>
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Transition of children with life-limiting conditions to adult care and healthcare use: a systematic review
Publisher
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Pediatric Research
Date
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1120
Subject
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child; life-limiting condition; systematic review; Transition to adult care
Creator
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Jarvis SW; Roberts D; Flemming K; Richardson G; Fraser LK
Description
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Background: Improved survival has led to increasing numbers of children with life-limiting conditions transitioning to adult healthcare services. There are concerns that transition may lead to a reduction in care quality and increases in emergency care. This review explores evidence for differences in health or social care use post- versus pre-transition to adult services.
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<a href="http://doi.org/10.1038/s41390-021-01396-8" target="_blank" rel="noreferrer noopener">10.1038/s41390-021-01396-8</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
1120
Child
February 2022 List
Flemming K
Fraser LK
Jarvis SW
Life-limiting Condition
Pediatric Research
Richardson G
Roberts D
Systematic Review
Transition To Adult Care
-
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Title
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June 2021 List
Text
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June 2021 List
URL Address
<a href="http://doi.org/10.1038/s41390-021-01522-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41390-021-01522-6</a>
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Measuring communication quality in the Neonatal Intensive Care Unit
Publisher
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Pediatric Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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communication; communication quality; neonatal intensive care unit; neonatology; nicu; pediatric palliative care
Creator
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Guttmann KF; Orfali K; Kelley AS
Description
An account of the resource
BACKGROUND: High quality communication between providers and parents of seriously ill neonatal patients is vital and yet poorly understood. Feudtner summarized five challenges and seven priorities to the study and advancement of pediatric palliative care. Improvement of communication is a priority, while lack of specification and measurement of outcomes relevant to the pediatric population remains a challenge. Specifically, measurement of communication quality in pediatrics, and especially neonatology, is problematic. METHODS: We conducted a focused review of this topic which we hope will serve to support further research. We reviewed the current literature in Pubmed and searched the Palliative Care Research Cooperative (PCRC) instrument library. RESULTS: We found five validated instruments which met our criteria, relied on patient or surrogate report, and were developed to measure quality of communication and/or satisfaction with communication with adult patients or their surrogates. Our Pubmed search yielded 249 unique results, only two of which met our inclusion criteria. CONCLUSION: We conclude that development and exhaustive testing of a validated, comprehensive measure of communication quality for the neonatal population is needed. Without such a measure, it will be difficult to advance the field and achieve high quality prognostic communication for the parents of seriously ill babies. IMPACT: Measurement of communication quality in pediatrics, and especially neonatology, is problematic, understudied, and yet critical to the advancement of the field. There has not been an overview of existing measures of communication quality in the NICU published, nor has there been a comprehensive discussion of this important topic. Our paper provides such an overview and initiates such a discussion. We present a narrative review of existing measures of communication quality in the NICU in order to highlight the need for further study.
Identifier
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<a href="http://doi.org/10.1038/s41390-021-01522-6" target="_blank" rel="noreferrer noopener">10.1038/s41390-021-01522-6</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Communication
communication quality
Guttmann KF
June 2021 List
Kelley AS
Neonatal Intensive Care Unit
Neonatology
Nicu
Orfali K
Pediatric Palliative Care
Pediatric Research
-
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Title
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November 2020 List
Text
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Citation List Month
November 2020 List
URL Address
<a href="http://doi.org/10.1038/s41390-020-01137-3" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41390-020-01137-3</a>
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Responses of pediatric palliative care to the COVID-19 pandemic in China
Publisher
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Pediatric Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Children's hospitals; China; COVID-19; COVID-19 Pandemic; Pandemic; pediatric palliative care
Creator
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Zhou X; Cai S; Guo Q
Identifier
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<a href="http://doi.org/10.1038/s41390-020-01137-3" target="_blank" rel="noreferrer noopener">10.1038/s41390-020-01137-3</a>
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2020
Cai S
Children's hospitals
China
COVID-19
COVID-19 Pandemic
Guo Q
November 2020 List
Pandemic
Pediatric Palliative Care
Pediatric Research
Zhou X
-
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Title
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September 2020 List
Text
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Citation List Month
September 2020 List
URL Address
<a href="http://doi.org/10.1038/s41390-020-1036-x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41390-020-1036-x</a>
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Healthcare interventions improving and reducing quality of life in children at the end of life: a systematic review
Publisher
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Pediatric Research
Date
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2020
Subject
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children; end-of-life; healthcare interventions; quality of life; systematic review
Creator
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Piette V; Beernaert K; Cohen J; Pauwels N S; Scherrens A L; van der Werff ten Bosch J; Deliens L
Description
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Background: Children with serious illness suffer from symptoms at the end of life that often fail to be relieved. An overview is required of healthcare interventions improving and decreasing quality of life (QOL) for children with serious illness at the end of life. Method(s): A systematic review was performed in five databases, January 2000 to July 2018 without language limit. Reviewers selected quantitative studies with a healthcare intervention, for example, medication or treatment, and QOL outcomes or QOL-related measures, for example, symptoms, for children aged 1-17 years with serious illness. One author assessed outcomes with the QualSyst and GRADE (Grades of Recommendation, Assessment, Development, and Evaluation) Framework; two authors checked a 25% sample. QOL improvement or reduction was categorized. Result(s): Thirty-six studies met the eligibility criteria studying 20 unique interventions. Designs included 1 randomized controlled trial, 1 cross-sectional study, and 34 cohort studies. Patient-reported symptom monitoring increased QOL significantly in cancer patients in a randomized controlled trial. Dexmedetomidine, methadone, ventilation, pleurodesis, and palliative care were significantly associated with improved QOL, and chemotherapy, stem cell transplant, and hospitalization with reduced QOL, in cohort studies. Conclusion(s): Use of patient-controlled symptom feedback, multidisciplinary palliative care teams with full-time practical support, inhalation therapy, and off-label sedative medication may improve QOL. Curative therapy may reduce QOL. Impact: QOL for children at the end of life may be improved with patient-controlled symptom feedback, multidisciplinary palliative care teams with full-time practical support, inhalation therapy, and off-label sedative medication.QOL for children at the end of life may be reduced with therapy with a curative intent, such as curative chemotherapy or stem cell transplant.A comprehensive overview of current evidence to elevate currently often-failing QOL management for children at the end of life.New paradigm-level indicators for appropriate and inappropriate QOL management in children at the end of life.New hypotheses for future research, guided by the current knowledge within the field.Various healthcare interventions (as described above) could or might be employed as tools to provide relief in QOL management for children with serious illness, such as cancer, at the end of life, and therefore could be discussed in pediatrician end-of-life training to limit the often failed QOL management in this population, cave the one-size-fits-all approach for individual cases.Multidisciplinary team efforts and 24/7 presence, especially practical support for parents, might characterize effective palliative care team interventions for children with serious illness at the end of life, suggesting a co-regulating link between well-being of the child partly to that of the parentsHypothesis-oriented research is needed, especially for children with nonmalignant disorders, such as genetic or neurological disorders at the end of life, as well as QOL outcomes for intervention research and psychosocial or spiritual outcomes. Copyright © 2020, International Pediatric Research Foundation, Inc.
Identifier
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<a href="http://doi.org/10.1038/s41390-020-1036-x" target="_blank" rel="noreferrer noopener">10.1038/s41390-020-1036-x</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
Beernaert K
Children
Cohen J
Deliens L
end-of-life
healthcare interventions
Pauwels N S
Pediatric Research
Piette V
Quality Of Life
Scherrens A L
September 2020 List
Systematic Review
Van Der Werff Ten Bosch J
-
Dublin Core
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Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
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URL Address
<a href="http://doi.org/10.1203/01.pdr.0000238302.84552.d0" target="_blank" rel="noreferrer noopener">http://doi.org/10.1203/01.pdr.0000238302.84552.d0</a>
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Title
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Autonomic nervous system dysregulation: Breathing and heart rate perturbation during wakefulness in young girls with Rett syndrome
Publisher
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Pediatric Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Pediatrics; patterns; disorder; dysfunction; hyperventilation; explanation; long qt syndrome; mecp2; mutations; sudden-death; breathing difficulties; Rett syndrome; trajectory; characteristics; irregular breathing; increased breathing frequency; increased mean airflow increased hear rate
Creator
An entity primarily responsible for making the resource
Weese-Mayer D E; Lieske S P; Boothby C M; Kenny A S; Bennett H L; Silvestri J M; Ramirez J M
Description
An account of the resource
This study characterizes cardiorespiratory dysregulation in young girls with MECP2 mutation-confirmed Rett syndrome (RS). Respiratory inductance plethysmography of chest/abdomen and ECG was obtained during daytime wakefulness in 47 girls with MECP2 mutation-confirmed RS and 47 age-, gender-, and ethnicity-matched controls (ages 2-7 y). An in-home breath-to-breath and beat-to-beat characterization was conducted and revealed that breathing was more irregular, with an increased breathing frequency, mean airflow. and heart rate in RS versus controls. There was a decreased correlation between normal breathing and heart rate variability, and an exaggerated increase in heart rate response to breathholds in RS versus controls. We conclude that girls with RS have cardiorespiratory dysregulation during breathholds as well as during "normal" breaths and during breaths before and subsequent to breathholds. This dysregulation may offer insight into the mechanisms that render girls With RS more vulnerable to sudden death.
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<a href="http://doi.org/10.1203/01.pdr.0000238302.84552.d0" target="_blank" rel="noreferrer noopener">10.1203/01.pdr.0000238302.84552.d0</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).
2006
Bennett H L
Boothby C M
breathing difficulties
characteristics
Disorder
dysfunction
explanation
hyperventilation
increased breathing frequency
increased mean airflow increased hear rate
irregular breathing
Kenny A S
Lieske S P
long qt syndrome
mecp2
mutations
Patterns
Pediatric Research
Pediatrics
Ramirez J M
Rett syndrome
Silvestri J M
sudden-death
Trajectory
Weese-Mayer D E
-
Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1203/01.pdr.0000190572.68191.13" target="_blank" rel="noreferrer">http://doi.org/10.1203/01.pdr.0000190572.68191.13</a>
Dublin Core
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Title
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Retrospective, multicentric study of 180 children with cytochrome C oxidase deficiency
Publisher
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Pediatric Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Prognosis; Mutation; adolescent; Preschool; infant; Q3 Literature Search; Newborn; DNA; Mitochondrial/genetics; Proteins/genetics; Sequence Deletion; Membrane Proteins; Mitochondrial Proteins; Carrier Proteins; Cytochrome-c Oxidase Deficiency/diagnosis/genetics/mortality; Czech Republic; Poland; Slovakia
Creator
An entity primarily responsible for making the resource
Bohm M; Pronicka E; Karczmarewicz E; Pronicki M; Piekutowska-Abramczuk D; Sykut-Cegielska J; Mierzewska H; Hansikova H; Vesela K; Tesarova M; Houstkova H; Houstek J; Zeman J
Description
An account of the resource
A retrospective, multicenter study of 180 children with cytochrome c oxidase (COX) deficiency analyzed the clinical features, prognosis, and molecular bases of the COX deficiency. Clinical symptoms including failure to thrive, encephalopathy, hypotony, Leigh syndrome, cardiac involvement, and hepatopathy appeared in most patients early after birth or in early childhood. Two thirds of all children died. Biochemical examination revealed an isolated COX deficiency in 101 children and COX deficiency combined with disturbances of other respiratory chain complexes in 79 children. Blood and cerebrospinal fluid lactate increased in 85% and 81% of examined cases, respectively. Pathogenic mutations in mitochondrial or nuclear DNA were established in 75 patients. Mutations in surfeit locus protein 1 gene (SURF1) were found in 47 children with Leigh syndrome; 2bp deletion 845-846delCT was found in 89% of independent alleles. Mutations in a mitochondrial copper-binding protein (SCO2) gene were found in nine children with encephalomyopathy and/or cardiomyopathy; all of them were homozygotes or heterozygotes for 1541G>A mutation. Different mitochondrial DNA (mtDNA) deletion or depletion were found in nine children, mtDNA mutation 3243A>G in six, mtDNA mutation 8363G>A in two children with Leigh syndrome and mtDNA mutations 8344A>G, and 9205-9206delTA in one child each. COX deficiency represents a heterogeneous group of diseases with unfavorable prognosis. Marked prevalence of two nuclear DNA mutations (845-846delCT in the SURF1 gene and 1541G>A in the SCO2 gene) associated with COX deficiency in a Slavonic population suggests the existence of regional differences in the genetic basis of COX deficiency.
2006
Identifier
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<a href="http://doi.org/10.1203/01.pdr.0000190572.68191.13" target="_blank" rel="noreferrer">10.1203/01.pdr.0000190572.68191.13</a>
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Type
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Journal Article
2006
Adolescent
Backlog
Bohm M
Carrier Proteins
Child
Cytochrome-c Oxidase Deficiency/diagnosis/genetics/mortality
Czech Republic
DNA
Female
Hansikova H
Houstek J
Houstkova H
Humans
Infant
Journal Article
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Text
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Citation List Month
September 2016 List
Dublin Core
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Title
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Moral Distress In The Everyday Life Of An Intensivist
Publisher
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Frontiers In Pediatrics
Date
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2016
Subject
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Judgment (ethics); Physicians; Critical Care Medicine; Research; Practice; Pediatric Research; Decision Making; Rj1-57
Moral Distress; Ethics; Medical; End-of-life Care; Decision-making; Pediatric Critical Care Medicine
Creator
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Daniel Garros
Description
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A regular work day for intensivists can be emotionally draining, as we witness suffering, fear, pain,
tragedies, unfair treatment of children, death…. We may experience the mental stress of dealing with
nursing shortages, increasing family demands, and frustration related to interpersonal conflicts (e.g.,
between parents and specialists) among other issues (1). For the most part, we learn to manage this
type of stress.
Several studies involving nearly every medical and surgical specialty indicate, however, that
approximately one of every three physicians experiences burnout at any given time. Burnout is characterized
by behaviors such as losing enthusiasm for work (emotional exhaustion), treating people as
if they were objects (depersonalization), and having a sense that work is no longer meaningful (low
personal accomplishment) (2).
Physicians, like other health-care professionals, can be at risk for another phenomenon, that of
moral distress (MoD). This concept emerged in nursing ethics: “a challenge that arises when one
has an ethical or moral judgment about care that differs from those who are in charge” (3). Thus,
institutional constraints were seen as its key source (inadequate staffing, other professionals’ influence,
family or patient choices, administrative agendas, institutional policies, and legislation) (3).
Unlike a moral dilemma in which one is uncertain what ethical action to take, MoD is experienced
by those who feel constrained from acting on their ethical judgment. Constraints are still recognized
frequently as external, institutional ones (4). Internal constraints may be related to perceived powerless,
lack of knowledge, increased moral sensitivity, or even lack of full understanding of a particular
situation. It could also represent a lack of “moral courage” (5).
In 2006, Nathaniel extended the definition, highlighting the consequences of not acting according
with ones’ moral judgment and be participating in perceived moral wrongdoing (6). The word
perceived is very crucial, since we may feel strongly that an action is unethical while a colleague
may feel just as strongly the opposite. It is well known that MoD in pediatric intensive care (PICU)
can be linked to aggressive treatment, witnessing repeated suffering, futile care, and high levels of
chronic disability post discharge and may be aggravated by work environment issues such as power
imbalances, improper communication, decision-making conflicts, unrealistic expectations, lack of
resources or personnel, and a high index of medical errors (2, 7) Corley and colleagues have developed
a scale (MDS), containing 20 clinical situations to assess the frequency to which MoD occurs, as
well as the intensity of the feeling (8) This scale, now on its second version, has been utilized in several
studies (4, 5), including some in the PICU environment (9). As MoD has been more thoroughly
investigated, discussion about the topic has become more prominent in the bioethics literature, with
several journal issues being fully dedicated to the theme (10, 11).
Identifier
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doi: 10.3389/fped.2016.00091
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Critical Care Medicine
Daniel Garros
Decision Making
Decision-making
End-of-life Care
Ethics
Frontiers in Pediatrics
Judgment (ethics)
Medical
Moral Distress
Pediatric Critical Care Medicine
Pediatric Research
Physicians
Practice
Research
Rj1-57
September 2016 List