1
40
5
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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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June 2021 List
Text
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June 2021 List
URL Address
<a href="http://doi.org/10.1097/pcc.0000000000002722" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/pcc.0000000000002722</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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A Cross-Sectional Study of the Clinical Metrics of Functional Status Tools in Pediatric Critical Illness
Publisher
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Pediatric Critical Care Medicine
Date
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2021
Subject
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Pediatric intensive care unit; quality of life; outcome; skeletal muscle
Creator
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Ong C; Lee JH; Yang L; Wong JJM; Leow MKS; Puthucheary ZA
Description
An account of the resource
OBJECTIVES: To determine the clinical metrics of functional assessments in pediatric critical illness survivors. DESIGN: Cross-sectional observational study. SETTING: PICU follow-up clinic. PATIENTS: Forty-four PICU survivors 6-12 months post PICU stay, and 52 healthy controls 0-18 years old. INTERVENTIONS: Nil. MEASUREMENTS AND MAIN RESULTS: Function was assessed using the Pediatric Quality of Life Inventory 4.0 generic scales and infant scales, the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test, and the Functional Status Scale. Muscle strength was assessed by hand grip strength in children greater than or equal to 6 years. Clinical metrics assessed included floor and ceiling effects, known-group, and convergent validity. Floor and ceiling effects were present if the participants achieving the worst or best scores exceeded 15%, respectively. Known-group validity was assessed by comparing scores between those with and without complex chronic conditions and abnormal versus good baseline function. Convergent validity was assessed using partial correlation between two tools. Functional Status Scale and Pediatric Quality of Life Inventory physical domain scores showed significant ceiling effects in PICU survivors (69.2% and 15.4%, respectively, achieved the highest possible score). Functional scores were not significantly different between children with or without complex chronic conditions or children with good versus abnormal baseline function. In healthy children, Pediatric Quality of Life Inventory physical correlated moderately with hand grip strength (partial r = 0.66; p < 0.001), whereas Pediatric Quality of Life Inventory psychosocial correlated moderately with Pediatric Evaluation of Disability Inventory-Computer Adaptive Test social/cognitive score (partial r = 0.53; p < 0.001). In PICU survivors, only Pediatric Quality of Life Inventory physical and Pediatric Evaluation of Disability Inventory-Computer Adaptive Test mobility scores were correlated (partial r = 0.55; p < 0.001). CONCLUSIONS: PICU functional assessment tools have varying clinical metrics. Considering ceiling effects, Pediatric Evaluation of Disability Inventory-Computer Adaptive Test may be more suitable in survivors than Functional Status Scale. Differences in scores between children with or without complex chronic conditions, and with or without baseline functional impairment, were not observed. Functional assessments likely require a combination of tools to measure the spectrum of pediatric critical illness and recovery.
Identifier
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<a href="http://doi.org/10.1097/pcc.0000000000002722" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002722</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
June 2021 List
Lee JH
Leow MKS
Ong C
Outcome
Pediatric Critical Care Medicine
Pediatric Intensive Care Unit
Puthucheary ZA
Quality Of Life
skeletal muscle
Wong JJM
Yang L
-
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/10.1007/s00415-009-5261-9" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00415-009-5261-9</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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An evaluation of rating scales utilized for deep brain stimulation for dystonia
Publisher
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Journal of Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
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Dystonia; Neurosciences & Neurology; Deep brain stimulation; cervical dystonia; globus-pallidus internus; primary generalized dystonia; electrical-stimulation; Globus pallidus internus; movement-disorders; Outcome; pallidotomy; Rating; scales; secondary dystonia; segmental dystonia; term-follow-up; torsion dystonia; tone and motor problems; unspecified Q3 conditions; Q3 conditions; tool development; scale development; surgical intervention; deep brain stimulation
Creator
An entity primarily responsible for making the resource
Susatia F; Malaty I A; Foote K D; Wu S S; Zeilman P R; Mishra M; Rodriguez R L; ul Haq I; Jacobson C E; Sun A Q; Okun M S
Description
An account of the resource
The objective of this study was to examine globus pallidus internus deep brain stimulation (GPi-DBS) outcomes in primary and secondary dystonia, derived from blinded ratings using two scales and two raters. Twenty-five patients with variable presentations of dystonia were evaluated with videotaped standardized dystonia rating scales at preoperative baseline and at 6 and 12 months following GPi-DBS implantation. These 75 examination videos were retrospectively evaluated, independently and in random order, by two movement disorder neurologists who were blinded to the treatment status. Both neurologists scored each videotaped evaluation using the Burke-Fahn-Marsden Dystonia Rating Scale-motor part (BFMDRS-M) and the Unified Dystonia Rating Scale (UDRS). A final score for each video was assigned by averaging the raters' scores. An intra-class correlation coefficient was used to calculate inter-rater reliability. A linear mixed model was fitted to investigate the time effect and its interaction with type of dystonia (primary versus secondary) for each rating scale. Inter-rater reliability was excellent. Intraclass correlation coefficients ranged from 0.994 to 0.997 for both scales at baseline, 6 and 12 months. The average motor improvement scores after GPi DBS for the entire heterogeneous group of dystonia patients after 6 and 12 months of stimulation was 21.32% (p = 0.0010) and 28.95% (p = 0.0017), respectively, when the UDRS score was used. Similar levels of improvement 20.46% (p = 0.0055) at 6 months and 27.39% (p = 0.00197) at 12 months were found using the BFMDRS-M score. Analysis using unblinded scores from our database revealed a 32.99 and 37.27% UDRS improvement at 6 and 12 months, and an improvement in UDRS score of 38.5 and 43.7% when the analysis was limited to only primary dystonia. If the data were further segregated to include only cases of DYT-1 primary generalized dystonia, the UDRS benefit increased to 48.24%. Our primary dystonia group was diluted by the presence of both old- and young-onset patients, as well as focal, segmental and generalized dystonia. In conclusion, (1) evaluating motor outcomes of DBS therapy for dystonia using independent, randomized retrospective rating by blinded raters' results in lower improvement scores than when outcomes are rated by unblinded treating neurologists. Blinded methodology may be superior and might produce a more realistic assessment of motor outcomes after DBS in patients with dystonia; (2) outcomes were similar whether the BFMDRS-M or UDRS was utilized; (3) GPi-DBS was effective in treating sustained involuntary motor co-contractions in medication refractory dystonia patients, more so in primary dystonia.
Identifier
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<a href="http://doi.org/10.1007/s00415-009-5261-9" target="_blank" rel="noreferrer noopener">10.1007/s00415-009-5261-9</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).
2010
cervical dystonia
deep brain stimulation
Dystonia
electrical-stimulation
Foote K D
globus pallidus internus
globus-pallidus internus
Jacobson C E
Journal Of Neurology
Malaty I A
Mishra M
movement-disorders
Neurosciences & Neurology
Okun M S
Outcome
pallidotomy
primary generalized dystonia
Q3 conditions
Rating
Rodriguez R L
scale development
scales
secondary dystonia
segmental dystonia
Sun A Q
surgical intervention
Susatia F
term-follow-up
tone and motor problems
tool development
torsion dystonia
ul Haq I
unspecified Q3 conditions
Wu S S
Zeilman P R
-
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/10.1542/peds.2012-2990" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-2990</a>
<a href="http://pediatrics.aappublications.org/content/132/3/e727" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/132/3/e727</a>
Dublin Core
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Title
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Outcomes of Children With Severe Bronchopulmonary Dysplasia Who Were Ventilator Dependent at Home
Publisher
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Pediatrics
Date
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2013
Subject
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bronchopulmonary dysplasia; outcome; home; positive pressure ventilation; Tracheostomy
Creator
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Cristea AI; Carroll AE; Davis SD; Swigonski NL; Ackerman VL
Description
An account of the resource
OBJECTIVE: To describe the incidence and outcomes of children with chronic respiratory failure secondary to severe bronchopulmonary dysplasia (BPD) on chronic positive pressure ventilation (PPV) via tracheostomy at home. METHODS: We retrospectively reviewed medical charts of patients with severe BPD who were PPV dependent at home and who were enrolled in a university-affiliated home ventilator program between 1984 and 2010. We excluded patients with other comorbidities that could contribute to the development of chronic respiratory failure. We reported the incidence of these children in Indiana and cumulative incidences of survival, liberation from PPV, and decannulation. RESULTS: Over 27 years, 628 children were cared for in our home ventilator program. Of these, 102 patients met inclusion criteria: 83 (81.4%) were alive and 19 (18.6%) were deceased. Sixty-nine patients (67.6%) were liberated from PPV, and 97.1% of them were weaned before their fifth birthday, with a median age at liberation of 24 months (interquartile range, 19–33). Similarly, 60 patients (58.8%) were decannulated, of which 96.7% completed this process before their sixth birthday, with a median age at decannulation of 37.5 months (interquartile range, 31.5–45). The incidence of children with chronic respiratory failure secondary to BPD who were PPV-dependent at home in Indiana was 1.23 per 100 000 live births in 1984 and increased to 4.77 per 100 000 live births in 2010. CONCLUSIONS: Although extreme prematurity associated with severe BPD necessitating PPV at home carries significant risks of morbidity and mortality, successful liberation from mechanical ventilation and decannulation are likely to occur.
2013-09
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2012-2990" target="_blank" rel="noreferrer">10.1542/peds.2012-2990</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).
Type
The nature or genre of the resource
Journal Article
2013
Ackerman VL
Backlog
Bronchopulmonary Dysplasia
Carroll AE
Cristea AI
Davis SD
Home
Journal Article
Outcome
Pediatrics
positive pressure ventilation
Swigonski NL
Tracheostomy
-
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/10.4314/ahs.v16i1.10" target="_blank" rel="noreferrer">http://doi.org/10.4314/ahs.v16i1.10</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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Outcome of childhood malignancies at the University of Port Harcourt Teaching Hospital: a call for implementation of palliative care
Publisher
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African Health Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Palliative Care; childhood malignancies; implementation; outcome
Creator
An entity primarily responsible for making the resource
Eke GK; Akani NA
Description
An account of the resource
BACKGROUND: Cancers in children are yet to be recognised as an important cause of childhood morbidity and mortality in developing countries where more than 70% of the world annual cases occur. Despite the limited resources and whatever the projected outcome, children with cancer need treatment, be it curative or palliative. OBJECTIVES: To determine outcome of cancers in children at the UPTH; identify factors that influence outcome, highlight the need for palliative care. METHOD: A retrospective study of cases of childhood malignancies admitted into Paediatric Oncology unit of UPTH over a two year period. Clinical profile of patients and outcome were analyzed using SPSS version 20.0. RESULTS: Sixty cases were analysed: 35(58.3%) males, 25(41.7%) females giving a M:F ratio of 1.4:1. Under-fives constituted 55%. Twenty-seven (45%) patients presented within 4 weeks of onset of symptoms. Median duration of symptoms before presentation was 8 weeks while 36 (60%) had metastatic disease at diagnosis. Twenty patients (33.3%) defaulted with or without specific treatment. Mortality was recorded in 26(43.4%) of cases. CONCLUSION: There were more cases of cancer amongst under-fives with male preponderance. Late presentation, financial constraints and high default rate were contributory factors to poor outcome in most cases. Lack of palliative care left many families to face their sufferings.
2016-03
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.4314/ahs.v16i1.10" target="_blank" rel="noreferrer">10.4314/ahs.v16i1.10</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
2016
African Health Sciences
Akani NA
Backlog
childhood malignancies
Eke GK
Implementation
Journal Article
Outcome
Palliative Care
-
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 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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Families' Priorities In Life-limiting Illness: Improving Quality With Online Empowerment
Publisher
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Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Child; Child Preschool; Disabled Children/psychology; Family; Female; Hospice; Humans; Infant; Internet; Longitudinal Studies; Male; Palliative Care; Parents/psychology; Power (psychology); Quality Of Life/psychology; Social Support; Surveys And Questionnaires; United Kingdom; Young Adult
Child; Hospice; Outcome; Parents; Quality Of Life
Creator
An entity primarily responsible for making the resource
Harris N; Beringer A; Fletcher M
Description
An account of the resource
OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose and monitor parameters they identify as having an impact on their QOL, which aims to improve patient-professional communications and also to enhance patient empowerment within healthcare dialogues.
DESIGN:
A longitudinal, multisite mixed-method evaluation of MyQuality. Families were invited to use MyQuality and completed semi-structured interviews and a Family Empowerment Scale (FES) at T=0 and T+3 months.
PATIENTS AND SETTING:
Thirty-two families of children with LLIs, attending three children's hospices in one UK region.
OUTCOME MEASURES:
Website access, usage patterns and parameter choice, FES scores and qualitative evaluation of interviews.
RESULTS:
23/32 families chose to use the website. Mean duration of use was 106 days (range 2-301), with families choosing two or three parameters (range 1-15), most commonly seizures (24/32), constipation (9/32), pain (6/32) and sleep problems (6/32). Mean FES scores increased over time (3.45-3.85). Interview feedback confirmed the acceptability and ease of use of the website, and the value of a graphic record of change over time to support ongoing management and collaborative review of medical, nursing or social interventions.
CONCLUSIONS:
The identification and monitoring of patient-generated priorities via the MyQuality website empowers families and supports collaboration between parents and professionals to ensure that palliative care is truly patient and family centred.
Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Identifier
An unambiguous reference to the resource within a given context
doi: 10.1136/archdischild-2015-308769
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
Adolescent
Archives of Disease in Childhood
Beringer A
Child
Child Preschool
Disabled Children/psychology
Family
Female
Fletcher M
Harris N
Hospice
Humans
Infant
Internet
July 2016 List
Longitudinal Studies
Male
Outcome
Palliative Care
Parents
Parents/psychology
Power (psychology)
Quality Of Life
Quality Of Life/psychology
Social Support
Surveys And Questionnaires
United Kingdom
Young Adult