1
40
71
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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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March 2021 List
Text
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March 2021 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2020.18109" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2020.18109</a>
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Title
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Genome Sequencing as a Diagnostic Test in Children With Unexplained Medical Complexity
Publisher
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JAMA Network Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Child; Female; Humans; Male; Reproducibility of Results; Child Preschool; Canada; Prospective Studies; Predictive Value of Tests; Genetic Testing/statistics & numerical data; Somatoform Disorders/diagnosis; Whole Genome Sequencing/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Costain G; Walker S; Marano M; Veenma D; Snell M; Curtis M; Luca S; Buera J; Arje D; Reuter MS; Thiruvahindrapuram B; Trost B; Sung WWL; Yuen RKC; Chitayat D; Mendoza-Londono R; Stavropoulos DJ; Scherer SW; Marshall CR; Cohn RD; Cohen E; Orkin J; Meyn MS; Hayeems RZ
Description
An account of the resource
IMPORTANCE: Children with medical complexity (CMC) represent a growing population in the pediatric health care system, with high resource use and associated health care costs. A genetic diagnosis can inform prognosis, anticipatory care, management, and reproductive planning. Conventional genetic testing strategies for CMC are often costly, time consuming, and ultimately unsuccessful. OBJECTIVE: To evaluate the analytical and clinical validity of genome sequencing as a comprehensive diagnostic genetic test for CMC. DESIGN, SETTING, AND PARTICIPANTS: In this cohort study of the prospective use of genome sequencing and comparison with standard-of-care genetic testing, CMC were recruited from May 1, 2017, to November 30, 2018, from a structured complex care program based at a tertiary care pediatric hospital in Toronto, Canada. Recruited CMC had at least 1 chronic condition, technology dependence (child is dependent at least part of each day on mechanical ventilators, and/or child requires prolonged intravenous administration of nutritional substances or drugs, and/or child is expected to have prolonged dependence on other device-based support), multiple subspecialist involvement, and substantial health care use. Review of the care plans for 545 CMC identified 143 suspected of having an undiagnosed genetic condition. Fifty-four families met inclusion criteria and were interested in participating, and 49 completed the study. Probands, similarly affected siblings, and biological parents were eligible for genome sequencing. EXPOSURES: Genome sequencing was performed using blood-derived DNA from probands and family members using established methods and a bioinformatics pipeline for clinical genome annotation. MAIN OUTCOMES AND MEASURES: The primary study outcome was the diagnostic yield of genome sequencing (proportion of CMC for whom the test result yielded a new diagnosis). RESULTS: Genome sequencing was performed for 138 individuals from 49 families of CMC (29 male and 20 female probands; mean [SD] age, 7.0 [4.5] years). Genome sequencing detected all genomic variation previously identified by conventional genetic testing. A total of 15 probands (30.6%; 95% CI 19.5%-44.6%) received a new primary molecular genetic diagnosis after genome sequencing. Three individuals had novel diseases and an additional 9 had either ultrarare genetic conditions or rare genetic conditions with atypical features. At least 11 families received diagnostic information that had clinical management implications beyond genetic and reproductive counseling. CONCLUSIONS AND RELEVANCE: This study suggests that genome sequencing has high analytical and clinical validity and can result in new diagnoses in CMC even in the setting of extensive prior investigations. This clinical population may be enriched for ultrarare and novel genetic disorders. Genome sequencing is a potentially first-tier genetic test for CMC.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2020.18109" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.18109</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
Arje D
Buera J
Canada
Child
Child Preschool
Chitayat D
Cohen E
Cohn RD
Costain G
Curtis M
Female
Genetic Testing/statistics & numerical data
Hayeems RZ
Humans
JAMA Network Open
Luca S
Male
Marano M
March 2021 List
Marshall CR
Mendoza-Londono R
Meyn MS
Orkin J
Predictive Value of Tests
Prospective Studies
Reproducibility of Results
Reuter MS
Scherer SW
Snell M
Somatoform Disorders/diagnosis
Stavropoulos DJ
Sung WWL
Thiruvahindrapuram B
Trost B
Veenma D
Walker S
Whole Genome Sequencing/statistics & numerical data
Yuen RKC
-
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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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
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URL Address
<a href="http://doi.org/10.1212/WNL.0b013e318237f649" target="_blank" rel="noreferrer noopener">http://doi.org/10.1212/WNL.0b013e318237f649</a>
Dublin Core
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Title
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Quantifying physical decline in juvenile neuronal ceroid lipofuscinosis (Batten disease)
Publisher
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Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
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Cross-Sectional Studies; Disease Progression; Young Adult; Child; Humans; Adult; Prospective Studies; Adolescent; Child Preschool; Regression Analysis; Reproducibility of Results; Analysis of Variance; Neuropsychological Tests; Mutation; Disabled Persons; Genotype; Homozygote; Membrane Glycoproteins; Molecular Chaperones; Neuronal Ceroid-Lipofuscinoses; tone and motor problems; NCL3; tool development; scale development; UBDRS
Creator
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Kwon J M; Adams H; Rothberg P G; Augustine E F; Marshall F J; Deblieck E A; Vierhile A; Beck C A; Newhouse N J; Cialone J; Levy E; Ramirez-Montealegre D; Dure L S; Rose K R; Mink J W
Description
An account of the resource
OBJECTIVE: To use the Unified Batten Disease Rating Scale (UBDRS) to measure the rate of decline in physical and functional capability domains in patients with juvenile neuronal ceroid lipofuscinosis (JNCL) or Batten disease, a neurodegenerative lysosomal storage disorder. We have evaluated the UBDRS in subjects with JNCL since 2002; during that time, the scale has been refined to improve reliability and validity. Now that therapies are being proposed to prevent, slow, or reverse the course of JNCL, the UBDRS will play an important role in quantitatively assessing clinical outcomes in research trials. METHODS: We administered the UBDRS to 82 subjects with JNCL genetically confirmed by CLN3 mutational analysis. Forty-four subjects were seen for more than one annual visit. From these data, the rate of physical impairment over time was quantified using multivariate linear regression and repeated-measures analysis. RESULTS: The UBDRS Physical Impairment subscale shows worsening over time that proceeds at a quantifiable linear rate in the years following initial onset of clinical symptoms. This deterioration correlates with functional capability and is not influenced by CLN3 genotype. CONCLUSION: The UBDRS is a reliable and valid instrument that measures clinical progression in JNCL. Our data support the use of the UBDRS to quantify the rate of progression of physical impairment in subjects with JNCL in clinical trials.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1212/WNL.0b013e318237f649" target="_blank" rel="noreferrer noopener">10.1212/WNL.0b013e318237f649</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).
2011
Adams H
Adolescent
Adult
Analysis of Variance
Augustine E F
Beck C A
Child
Child Preschool
Cialone J
Cross-sectional Studies
Deblieck E A
Disabled Persons
Disease Progression
Dure L S
Genotype
Homozygote
Humans
Kwon J M
Levy E
Marshall F J
Membrane Glycoproteins
Mink J W
Molecular Chaperones
Mutation
NCL3
Neurology
Neuronal Ceroid-Lipofuscinoses
Neuropsychological Tests
Newhouse N J
Prospective Studies
Ramirez-Montealegre D
Regression Analysis
Reproducibility of Results
Rose K R
Rothberg P G
scale development
tone and motor problems
tool development
UBDRS
Vierhile A
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2021 List
URL Address
<a href="http://doi.org/10.1136/bmjopen-2020-039713" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjopen-2020-039713</a>
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Title
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Evaluating the validity, reliability and clinical utility of the Music therapy Sensory Instrument for Cognition, Consciousness and Awareness (MuSICCA): protocol of a validation study
Publisher
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BMJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Adolescent; Child; Reproducibility of Results; Ireland; Music Therapy; Consciousness; paediatric palliative care; rehabilitation medicine; developmental neurology & neurodisability; State Medicine; neurological injury; paediatric neurology
Creator
An entity primarily responsible for making the resource
Pool JW; Siegert RJ; Taylor S; Dunford C; Magee W
Description
An account of the resource
INTRODUCTION: A growing number of children and young people are surviving severe acquired brain injuries due to advances in healthcare. However, many fail to emerge from coma and continue to live with disorders of consciousness (DOC). Diagnostic, clinical and ethical challenges are prominent in this group. Misdiagnosis can have severe consequences for children and their families, including inadequate care, insufficient access to rehabilitation and stimulation, reduced accessibility to services and inappropriately limited opportunities for participation. The proposed project will develop and validate a diagnostic measure that supports detailed goal-planning-the Music therapy Sensory Instrument for Cognition, Consciousness and Awareness (MuSICCA). METHODS AND ANALYSIS: Face validity will be assessed using a short questionnaire and the MuSICCA will be amended if face validity is insufficient. Once face validity is sufficient, 80 participants with suspected DOC will be recruited from multiple sites around the UK, USA and Ireland.Validity will be assessed using external reference standards (Coma Recovery Scale-Revised, Coma Near-Coma Scale and Nociception Coma Scale). Intra-rater reliability will be established using repeated ratings of video recordings from the assessment sessions. Inter-rater reliability will be assessed through video ratings by a second blinded assessor. In addition to these analyses, the clinical utility of the MuSICCA will be evaluated using a questionnaire to be completed by clinicians and relatives of the participants following the completion of the MuSICCA assessment. ETHICS AND DISSEMINATION: Ethical approval has been obtained for this study from the Research Ethics Committee and Health Research Authority of the National Health Service of the UK (ID: 167534). Results will be presented at national and international conferences, published in scientific journals and disseminated to participant representatives, clinicians, educators and care providers. TRIAL REGISTRATION DETAILS: This study was registered at ClinicalTrials.gov Protocol Registration and Results System on 7(th) August 2019 (ID: NCT04050995); Pre-results.
Identifier
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<a href="http://doi.org/10.1136/bmjopen-2020-039713" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2020-039713</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
Adolescent
Bmj Open
Child
Consciousness
developmental neurology & neurodisability
Dunford C
Ireland
July 2021 List
Magee W
Music Therapy
neurological injury
paediatric neurology
paediatric palliative care
Pool JW
rehabilitation medicine
Reproducibility of Results
Siegert RJ
State Medicine
Taylor S
-
Dublin Core
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Title
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2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1186/s12904-022-01025-z" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-022-01025-z</a>
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Title
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Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool
Publisher
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BMC Palliative Care
Date
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2022
Creator
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Avoine-Blondin J; Dumont É; Marquis MA; Duval M; Sultan S
Description
An account of the resource
BACKGROUND: Advanced childhood cancer, a condition with no available cancer-focused treatment options, greatly impacts Quality of Life (QoL). We need appropriate assessment strategies to select adapted treatment targets, improve care and optimize communication. Our first goal was to identify the domains of patients' QoL by combining for the first time the perspectives of patients and parents with previously collected reports in professionals. Our second goal was to develop a simple QoL assessment tool and optimize its format and content for use in the childhood advanced cancer population. METHODS: To identify QoL domains, we conducted qualitative interviews with 7 young patients (4 girls, 3 boys, aged 13 ± 4 yrs) and 9 parents (7 mothers, 2 fathers) from our treatment centre. We used inductive thematic content analysis to code and categorize respondents' viewpoints. The first version of the tool (Advance QoL) was then drafted, and structured feedback was collected through interviews and a survey with 15 experts. We computed content validity indices. RESULTS: Apart from the physical, psychological, and social domains, participants insisted on four original themes: autonomy, pleasure, the pursuit of achievement, and the sense of feeling heard. This was in line with the categories found in a preliminary study involving professionals (PMID: 28137343). Experts evaluated the tool as clear, relevant, acceptable, and usable. They formulated recommendations on instructions, timeframe, and item formulations, which we implemented in the refined version. CONCLUSIONS: Advance QoL is an innovative tool targeting key life domains in childhood advanced cancer. It is focused on preserved abilities and targets of care. The refined version is appropriate for adult respondents within families and professionals. Future studies will develop versions for young ages to collect the experience of patients themselves. This will open on future reliability, validity, sensitivity, and implementation studies.
Identifier
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<a href="http://doi.org/10.1186/s12904-022-01025-z" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-01025-z</a>
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).
2022
2022 Special Edition 3 - Oncology List
Adolescent
Adult
Advanced Cancer
Avoine-Blondin J
BMC Palliative Care
Child
Concept Formation
Dumont É
Duval M
Female
Humans
Male
Marquis MA
Mixed-method
Neoplasms
Palliative Care
Pediatrics
psychology/therapy
Quality Of Life
Reproducibility of Results
Sultan S
Surveys And Questionnaires
-
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/10.1097/BPO.0b013e3181558bc1" target="_blank" rel="noreferrer">http://doi.org/10.1097/BPO.0b013e3181558bc1</a>
Dublin Core
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Title
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Diagnostic evaluation using whole-body technetium bone scan in children with cerebral palsy and pain.
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Orthopedics
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Female; Humans; Male; Pain Measurement; Adult; Severity of Illness Index; Reproducibility of Results; adolescent; Preschool; retrospective studies; Emission-Computed; Tomography; Diagnosis; Differential; Bone and Bones/radionuclide imaging; Cerebral Palsy/complications/radionuclide imaging; Pain/etiology/radionuclide imaging; Single-Photon/methods; Technetium/diagnostic use; Whole Body Imaging/methods
Creator
An entity primarily responsible for making the resource
Bajelidze G; Belthur MV; Littleton AG; Dabney Kirk W; Miller F
Description
An account of the resource
BACKGROUND: Pain in noncommunicative children can be difficult to localize and diagnose. The purpose of this study is to report our experience using a 3-phase whole-body technetium bone scan as a screening tool in identifying the source of persistent pain in children with profound disabilities who cannot communicate. METHODS: We reviewed the medical and imaging records of 45 patients who met the inclusion criteria of the study, which included a diagnosis of spastic quadriplegic cerebral palsy with severe motor and cognitive impairment, persistent pain of more than 1 week in duration with no recognizable source, and a 3-phase whole-body bone scan as part of the pain workup. RESULTS: The study group included 26 females and 19 males with an average age at presentation of 13.5 years (range, 3-20 years). A positive bone scan was seen in 24 patients (53%). The diagnosis and the source of pain were identified in all 24 patients with a positive bone scan, with the bone scan being instrumental in establishing a diagnosis or localization in 22 patients. An orthopaedic diagnosis was not established in the 21 other patients with a negative bone scan. Based on the bone scan results, additional imaging was obtained at the anatomical location indicated. The bone scan was used to establish a diagnosis of fracture in 10 of 24 patients. Other diagnoses included 3 patients with painful internal hardware, 2 with sinusitis, 2 with infections, and 1 with an obstructed kidney. CONCLUSIONS: Whole-body bone scan is a viable imaging option to identify the source of persistent pain in children who are noncommunicative. The bone scan can assist in localizing the source of pain and direct the location for further imaging as needed.
2008-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/BPO.0b013e3181558bc1" target="_blank" rel="noreferrer">10.1097/BPO.0b013e3181558bc1</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
2008
Adolescent
Adult
Backlog
Bajelidze G
Belthur MV
Bone and Bones/radionuclide imaging
Cerebral Palsy/complications/radionuclide imaging
Child
Dabney Kirk W
Diagnosis
Differential
Emission-Computed
Female
Humans
Journal Article
Journal Of Pediatric Orthopedics
Littleton AG
Male
Miller F
Pain Measurement
Pain/etiology/radionuclide imaging
Preschool
Reproducibility of Results
Retrospective Studies
Severity Of Illness Index
Single-Photon/methods
Technetium/diagnostic use
Tomography
Whole Body Imaging/methods
-
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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March 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
March 2018 List
URL Address
<a href="http://doi.org/10.1177/1359105314550349" target="_blank" rel="noreferrer">http://doi.org/10.1177/1359105314550349</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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Development and validation of the Communicating with Family about Brain Death Scale
Publisher
An entity responsible for making the resource available
Journal Of Health Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Communication; Family; Tissue and Organ Procurement; adolescent; Adult; Attitudes; brain-dead organ donation; Brain Death/ diagnosis; communicating with family about brain death; Cross-Sectional Studies; decision making; end-of-life decision making; FACTOR analysis; Female; first-person organ donation consent laws; Health Knowledge; Humans; Male; Middle Aged; misconceptions about brain death; Practice; Reproducibility of Results; statistical; Young Adult
Creator
An entity primarily responsible for making the resource
Bresnahan M; Zhuang J
Description
An account of the resource
This study reports development of a scale assessing communication with family about brain-dead organ donation. Two cross-sectional studies demonstrated scale validity. Tests of internal, external, and predictive validity were conducted using confirmatory factor analysis. In both studies, the same 6 items were shown to be unidimensional with acceptable reliability. Parallelism was shown between the Brain Death Scale and a measure of communication with family. Predictive validity was exhibited between participants' donor status and the Brain Death Scale. The scale was associated with knowledge about brain death confirming misconceptions about brain-dead organ donation.
2016-07
Identifier
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<a href="http://doi.org/10.1177/1359105314550349" target="_blank" rel="noreferrer">10.1177/1359105314550349</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
Adolescent
Adult
Attitudes
Brain Death/ diagnosis
brain-dead organ donation
Bresnahan M
communicating with family about brain death
Communication
Cross-sectional Studies
Decision Making
End-of-life Decision Making
Factor Analysis
Family
Female
first-person organ donation consent laws
Health Knowledge
Humans
Journal Of Health Psychology
Male
March 2018 List
Middle Aged
misconceptions about brain death
Practice
Reproducibility of Results
statistical
Tissue and Organ Procurement
Young Adult
Zhuang J
-
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/10.1007/bf02532424" target="_blank" rel="noreferrer">http://doi.org/10.1007/bf02532424</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
On the mathematical modelling of pain
Publisher
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Neurochemical Research
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Humans; Analgesia; Reproducibility of Results; Animals; Models; Pain/physiopathology; Axons/physiology; Nerve Net/physiology; Neurological; Neuronal Plasticity; Neurons/physiology; Theoretical
Creator
An entity primarily responsible for making the resource
Britton NF; Skevington SM
Description
An account of the resource
In this review a case is presented for the use of mathematical modelling in the study of pain. The philosophy of mathematical modelling is outlined and a recommendation is made for the use of modern nonlinear techniques and computational neuroscience in the modelling of pain. Classic and more recent examples of modelling in neurobiology in general and pain in particular, at three different levels-molecular, cellular and neural networks-are described and evaluated. Directions for further progress are indicated, particularly in plasticity and in modelling brain mechanisms. Major advantages of mathematical modelling are that it can handle extremely complex theories and it is non-invasive, and so is particularly valuable in the investigation of chronic pain.
1996
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/bf02532424" target="_blank" rel="noreferrer">10.1007/bf02532424</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
1996
Analgesia
Animals
Axons/physiology
Backlog
Britton NF
Humans
Journal Article
Models
Nerve Net/physiology
Neurochemical Research
Neurological
Neuronal Plasticity
Neurons/physiology
Pain/physiopathology
Reproducibility of Results
Skevington SM
Theoretical
-
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/10.1177/0272989x9801800302" target="_blank" rel="noreferrer">http://doi.org/10.1177/0272989x9801800302</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
Using a treatment-tradeoff method to elicit preferences for the treatment of locally advanced non-small-cell lung cancer
Publisher
An entity responsible for making the resource available
Medical Decision Making
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; Attitude to Health; Aged; Treatment Outcome; Choice Behavior; Decision Support Techniques; Survival Analysis; Feasibility Studies; Reproducibility of Results; Non-U.S. Gov't; Research Support; Comparative Study; Adjuvant; Chemotherapy; Carcinoma; Questionnaires/standards; Antineoplastic Agents/adverse effects/therapeutic use; Lung Neoplasms/psychology/radiotherapy; Non-Small-Cell Lung/psychology/radiotherapy; Prostatic Neoplasms/psychology/radiotherapy; Radiotherapy/adverse effects/methods
Creator
An entity primarily responsible for making the resource
Brundage MD; Davidson JR; Mackillop WJ; Feldman-Stewart D; Groome P
Description
An account of the resource
The study was designed to evaluate a treatment-tradeoff method for its potential in helping lung cancer patients make treatment decisions. A treatment-tradeoff interview was conducted to determine how patients weighed potential survival benefits against the potential toxicities of different treatment options: 1) low-dose versus high-dose radiotherapy, and 2) high-dose radiotherapy versus combination chemo-radiotherapy. Fifty-six patients who had experienced cancer and 20 clinic staff participated; twenty of these participants repeated the interview in an assessment of response consistency. The treatment-tradeoff method proved feasible: all staff and 53 of the 56 patients were able to complete the process. A wide range of threshold scores across participants was observed for both tradeoffs. Sixty percent of the patients would accept the more toxic combination therapy over high-dose radiotherapy if the former offered a 10% absolute improvement in three-year survival. The method also proved reliable: test-retest correlations were high (tau ranged from 0.7 to 0.87 and r from 0.82 to 0.94) and test-retest mean score differences were low (1.3-4.2). The most clinically useful measure of consistency was a "preference consistency" index, which revealed that most patients declared the same treatment preference at test and retest. The authors conclude that, while there is great interindividual variability in willingness to accept aggressive treatments for lung cancer, patients' values can be consistently elicited with the tradeoff method. The method has potential for clinical application in decision making and for health-care policy development.
1998
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0272989x9801800302" target="_blank" rel="noreferrer">10.1177/0272989x9801800302</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
Adjuvant
Aged
Antineoplastic Agents/adverse effects/therapeutic use
Attitude To Health
Backlog
Brundage MD
Carcinoma
Chemotherapy
Choice Behavior
Comparative Study
Davidson JR
Decision Support Techniques
Feasibility Studies
Feldman-Stewart D
Female
Groome P
Humans
Journal Article
Lung Neoplasms/psychology/radiotherapy
Mackillop WJ
Male
Medical Decision Making
Non-Small-Cell Lung/psychology/radiotherapy
Non-U.S. Gov't
Prostatic Neoplasms/psychology/radiotherapy
Questionnaires/standards
Radiotherapy/adverse effects/methods
Reproducibility of Results
Research Support
Survival Analysis
Treatment Outcome
-
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/10.1017/s0012162203000306" target="_blank" rel="noreferrer">http://doi.org/10.1017/s0012162203000306</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
Assessing the impact of pediatric epilepsy and concomitant behavioral, cognitive, and physical/neurologic disability: Impact of Childhood Neurologic Disability Scale
Publisher
An entity responsible for making the resource available
Developmental Medicine And Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Child; Female; Humans; Male; Questionnaires; Follow-Up Studies; Longitudinal Studies; Reproducibility of Results; Disability Evaluation; Diagnostic and Statistical Manual of Mental Disorders; adolescent; Preschool; Chronic disease; Child Behavior Disorders/diagnosis/etiology; Cognition Disorders/diagnosis/etiology; Epilepsy/complications/diagnosis
Creator
An entity primarily responsible for making the resource
Camfield C; Breau L; Camfield P
Description
An account of the resource
Epilepsy has a significant impact on a child's life, the extent to which is based on four factors: epilepsy, cognition, behavioral, and physical/neurologic function. This study evaluates the ability of the 44-item Impact of Childhood Neurologic Disability Scale (ICND) to assess each of these four realms. Parents of children (aged 2 to 18 years) with epilepsy rated their child's overall quality of life and completed the ICND. External validation compared the ICND with (1) neurologists' reports of children's behavior, cognitive abilities, physical/neurologic disability, and epilepsy; and (2) parents, teachers, and children's ratings on six 'criterion standard' questionnaires. Families of 68 children with epilepsy only and 29 children with 'epilepsy-plus' (additional cognitive, behavioral, or physical/neurologic disability; 39 males, 58 females; mean age at testing 10 years 3 months [SD 4.5] age range 2 to 17 years) participated. Internal consistency was excellent (Cronbach's alpha=0.92) as was test-retest reliability (intraclass correlation=0.89). Caregivers distinguished the impact of each of the four realms. Scores were negatively related to quality of life (Pearson's r=-0.59). Children with high ICND scores had more difficulties at home and school. Their parents saw them as less rewarding and adaptable and the children saw themselves as less intelligent and less popular with more emotional problems. In addition, children with 'epilepsy-plus' had significantly higher total ICND scores as well as markedly elevated scores within each of the four realms when compared with the epilepsy-only group. It is concluded that the ICND is an accurate, quick measurement tool reflecting the impact of behavior, cognitive learning ability, physical/neurologic disability, and epilepsy on children and their families.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/s0012162203000306" target="_blank" rel="noreferrer">10.1017/s0012162203000306</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
2003
Adolescent
Backlog
Breau L
Camfield C
Camfield P
Child
Child Behavior Disorders/diagnosis/etiology
Chronic Disease
Cognition Disorders/diagnosis/etiology
Developmental Medicine and Child Neurology
Diagnostic and Statistical Manual of Mental Disorders
Disability Evaluation
Epilepsy/complications/diagnosis
Female
Follow-up Studies
Humans
Journal Article
Longitudinal Studies
Male
Preschool
Questionnaires
Reproducibility of Results
-
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/10.1080/10615800903094273" target="_blank" rel="noreferrer">http://doi.org/10.1080/10615800903094273</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A short form of the Posttraumatic Growth Inventory
Publisher
An entity responsible for making the resource available
Anxiety, Stress, And Coping
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Female; Humans; Male; Young Adult; Adult; Aged; Middle Aged; Life Change Events; Reproducibility of Results; Psychometrics; adolescent; 80 and over; Adaptation; Psychological; bereavement; Statistical; Psychological Tests; Factor Analysis; Domestic Violence/psychology; Leukemia/psychology
Creator
An entity primarily responsible for making the resource
Cann A; Calhoun LG; Tedeschi RG; Taku K; Vishnevsky T; Triplett KN; Danhauer SC
Description
An account of the resource
A short form of the Posttraumatic Growth Inventory (PTGI-SF) is described. A sample of 1351 adults who had completed the Posttraumatic Growth Inventory (PTGI) in previous studies provided the basis for item selection. The resulting 10-item form includes two items from each of the five subscales of the original PTGI, selected on the basis of loadings on the original factors and breadth of item content. A separate sample of 186 completed the short form of the scale (PTGI-SF). Confirmatory factor analyses on both data sets demonstrated a five-factor structure for the PTGI-short form (PTGI-SF) equivalent to that of the PTGI. Three studies of homogenous clinical samples (bereaved parents, intimate partner violence victims, and acute leukemia patients) demonstrated that the PTGI-SF yields relationships with other variables of interest that are equivalent to those found using the original form of the PTGI. A final study demonstrated that administering the 10 short-form items in a random order, rather than in the fixed context of the original scale, did not impact the performance of the PTGI-SF. Overall, these results indicate that the PTGI-SF could be substituted for the PTGI with little loss of information.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/10615800903094273" target="_blank" rel="noreferrer">10.1080/10615800903094273</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
2010
80 And Over
Adaptation
Adolescent
Adult
Aged
Anxiety, Stress, And Coping
Backlog
Bereavement
Calhoun LG
Cann A
Danhauer SC
Domestic Violence/psychology
Factor Analysis
Female
Humans
Journal Article
Leukemia/psychology
Life Change Events
Male
Middle Aged
Psychological
Psychological Tests
Psychometrics
Reproducibility of Results
statistical
Taku K
Tedeschi RG
Triplett KN
Vishnevsky T
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
Backlog
URL Address
<a href="http://doi.org/10.1089/jpm.2005.8.s-148" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2005.8.s-148</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
Ethical considerations in end-of-life care and research
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Humans; Mental Competency; Reproducibility of Results; Research; Ethics; quality of life; Palliative Care/ethics; Psychological; Stress; Multi-site Ethics; Decision Making/ethics; Empirical Research; Human Experimentation/ethics; Research Subjects; Terminal Care/ethics; Beneficence
Creator
An entity primarily responsible for making the resource
Casarett D
Description
An account of the resource
The goal of good palliative care is to relieve suffering and to improve quality of life. However, it is clear that access to palliative care is inconsistent. At least in part, these deficiencies exist because of a lack of solid evidence on which to base clinical decisions. Therefore, there is an urgent need for research that can define the standard of care and can increase access to quality care. This paper discusses six ethical aspects of end-of-life research that investigators and clinicians should consider in designing and conducting palliative care research. These include: (1) whether a study is research or quality improvement; (2) the study's potential benefits to future patients; (3) the study's potential benefits to subjects; (4) the study's risks to subjects; (5) subjects' decision-making capacity; and (6) the voluntariness of subjects' choices to participate in research.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2005.8.s-148" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.s-148</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
2005
Backlog
Beneficence
Casarett D
Decision Making/ethics
Empirical Research
Ethics
Human Experimentation/ethics
Humans
Journal Article
Journal of Palliative Medicine
Mental Competency
Multi-site Ethics
Palliative Care/ethics
Psychological
Quality Of Life
Reproducibility of Results
Research
Research Subjects
Stress
Terminal Care/ethics
-
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/10.2307/3562922" target="_blank" rel="noreferrer">http://doi.org/10.2307/3562922</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The sorcerer's broom: medicine's rampant technology
Publisher
An entity responsible for making the resource available
The Hastings Center Report
Date
A point or period of time associated with an event in the lifecycle of the resource
1993
Subject
The topic of the resource
Humans; Attitude to Health; Attitude of Health Personnel; Social Values; Risk Assessment; Reproducibility of Results; Power (Psychology); Ethics; Uncertainty; Medical; Physicians/psychology; Diffusion of Innovation; Health Care and Public Health; Technology; science; Dehumanization
Creator
An entity primarily responsible for making the resource
Cassell EJ
Description
An account of the resource
Discusses the impact of technology on the practice of medicine. Effect of technology to medical inflation; Influence of technology on the attempt to reform the health care system and on the redirection of the goals of health care system; Problems related to medical technology; Technological solutions to medical problems, Pitfalls of technology as it relates to medical practice.
1993
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.2307/3562922" target="_blank" rel="noreferrer">10.2307/3562922</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
1993
Attitude Of Health Personnel
Attitude To Health
Backlog
Cassell EJ
Dehumanization
Diffusion of Innovation
Ethics
Health Care and Public Health
Humans
Journal Article
Medical
Physicians/psychology
Power (psychology)
Reproducibility of Results
Risk Assessment
Science
Social Values
Technology
The Hastings Center Report
Uncertainty
-
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/10.1177/026921639701100102" target="_blank" rel="noreferrer">http://doi.org/10.1177/026921639701100102</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
Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Humans; Palliative Care; Questionnaires; Longitudinal Studies; Mental Health; Sensitivity and Specificity; Reproducibility of Results; quality of life; Neoplasms/psychology; Mental Status Schedule; Multicenter Studies as Topic
Creator
An entity primarily responsible for making the resource
Cohen SR; Mount BM; Bruera E; Provost M; Rowe J; Tong K
Description
An account of the resource
This study was carried out in eight palliative care services in four Canadian cities. A revised version of The McGill Quality of Life Questionnaire (MQOL) is compared to a single-item scale measuring overall quality of life (SIS), and the self-administered version of the Spitzer Quality of Life Index (SA-QLI), to obtain evidence of validity. MQOL total score predicts SIS better than does SA-QLI, although much of the variance remains to be explained. The results of principal components analysis of data using this revised version of MQOL are similar to those from previous MQOL studies with different patient populations. The MQOL subscales, constructed on the basis of principal components analysis, demonstrate acceptable internal consistency reliability. The MQOL measures reflecting physical well-being and existential well-being are important for predicting SIS.
1997
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/026921639701100102" target="_blank" rel="noreferrer">10.1177/026921639701100102</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
1997
Backlog
Bruera E
Cohen SR
Humans
Journal Article
Longitudinal Studies
Mental Health
Mental Status Schedule
Mount BM
Multicenter Studies as Topic
Neoplasms/psychology
Palliative Care
Palliative Medicine
Provost M
Quality Of Life
Questionnaires
Reproducibility of Results
Rowe J
Sensitivity and Specificity
Tong K
-
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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=7582177" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=7582177</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
1995
Subject
The topic of the resource
Female; Male; Palliative Care; Adult; Aged; Reproducibility of Results; Predictive Value of Tests; Karnofsky Performance Status; 80 and over; Non-U.S. Gov't; Comparative Study; Human; quality of life; Support; Middle Age; Questionnaires; Neoplasms/psychology/therapy
Creator
An entity primarily responsible for making the resource
Cohen SR; Mount BM; Strobel MG; Bui F
Description
An account of the resource
This is the first report on the McGill Quality of Life Questionnaire (MQOL), a questionnaire relevant to all phases of the disease trajectory for people with a life-threatening illness. This questionnaire differs from most others in three ways: the existential domain is measured; the physical domain is important but not predominant; positive contributions to quality of life are measured. This study was conducted in a palliative care setting. Principal components analysis suggests four subscales: physical symptoms, psychological symptoms, outlook on life, and meaningful existence. Construct validity of the subscales is demonstrated through the pattern of correlations with the items from the Spitzer Quality of Life Index. The importance of measuring the existential domain is highlighted by the finding that, of all the MQOL subscales and Spitzer items, only the meaningful existence subscale correlated significantly with a single item scale rating overall quality of life.
1995
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
1995
80 And Over
Adult
Aged
Backlog
Bui F
Cohen SR
Comparative Study
Female
Human
Journal Article
Karnofsky Performance Status
Male
Middle Age
Mount BM
Neoplasms/psychology/therapy
Non-U.S. Gov't
Palliative Care
Palliative Medicine
Predictive Value of Tests
Quality Of Life
Questionnaires
Reproducibility of Results
Strobel MG
Support
-
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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=8450136" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=8450136</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
Exploring consumer views of care provided by the Macmillan nurse using the critical incident technique
Publisher
An entity responsible for making the resource available
Journal Of Advanced Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
1993
Subject
The topic of the resource
Reproducibility of Results; Human; Patient Satisfaction; London; Research Design/standards; Attitude of Health Personnel; Role; Nurse Clinicians/standards; Nursing Evaluation Research/methods/standards; Oncologic Nursing/methods/standards
Creator
An entity primarily responsible for making the resource
Cox K; Bergen A; Norman IJ
Description
An account of the resource
This study focuses on descriptive accounts of one Macmillan nurse's work, as provided by key individuals coming into contact with this specialist professional service. Twenty respondents (eight patients, five carers, five district nurses and two general practitioners) were interviewed using a variation of the critical incident technique. Data were analysed in terms of meaningful observed events (critical happenings) that were perceived as effective or ineffective with respect to the delivery of high-quality nursing care. Some variations were found between groups of respondents in their perception of the nurse's role. However, there was a general emphasis on the possession of specialist knowledge of terminal cancer care and the positive impact of interventions to both the patient and to lay and professional carers. The critical incident technique was found to be a valuable method for eliciting detailed accounts of the work of the nurse in this specialized field of practice.
1993
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
1993
Attitude Of Health Personnel
Backlog
Bergen A
Cox K
Human
Journal Article
Journal Of Advanced Nursing
London
Norman IJ
Nurse Clinicians/standards
Nursing Evaluation Research/methods/standards
Oncologic Nursing/methods/standards
Patient Satisfaction
Reproducibility of Results
Research Design/standards
Role
-
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/10.1097/00006199-199703000-00010" target="_blank" rel="noreferrer">http://doi.org/10.1097/00006199-199703000-00010</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The Delphi method?
Publisher
An entity responsible for making the resource available
Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Humans; decision making; Data Collection; Research Design; Organizational Objectives; Reproducibility of Results; Delphi Technique; Organizational Policy; Non-U.S. Gov't; Research Support; Organizational; Nursing Research/methods/organization & administration
Creator
An entity primarily responsible for making the resource
Crisp J; Pelletier D; Duffield C; Adams A; Nagy S
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00006199-199703000-00010" target="_blank" rel="noreferrer">10.1097/00006199-199703000-00010</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
Description
An account of the resource
1997
1997
Adams A
Backlog
Crisp J
Data Collection
Decision Making
Delphi Technique
Duffield C
Humans
Journal Article
Nagy S
Non-U.S. Gov't
Nursing Research
Nursing Research/methods/organization & administration
Organizational
Organizational Objectives
Organizational Policy
Pelletier D
Reproducibility of Results
Research Design
Research Support
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1002/mds.27129" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/mds.27129</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
Clinical rating scale for pantothenate kinase-associated neurodegeneration: A pilot study
Publisher
An entity responsible for making the resource available
Movement Disorders
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Cross-Sectional Studies; Middle Aged; Aged; Young Adult; Child; Humans; Adult; Adolescent; Disabled Persons; Reproducibility of Results; Pilot Projects; Mental Disorders/et [Etiology]; Severity of Illness Index; Dystonia/di [Diagnosis]; Pantothenate Kinase-Associated Neurodegeneration/di [Diagnosis]; Parkinsonian Disorders/di [Diagnosis]; Cognitive Dysfunction/di [Diagnosis]; Cognitive Dysfunction/et [Etiology]; Dystonia/et [Etiology]; Mental Disorders/di [Diagnosis]; Ocular Motility Disorders/di [Diagnosis]; Ocular Motility Disorders/et [Etiology]; Pantothenate Kinase-Associated Neurodegeneration/co [Complications]; Pantothenate Kinase-Associated Neurodegeneration/ge [Genetics]; Parkinsonian Disorders/et [Etiology]; behavior; tone and motor problems; IND; tool development; scale development; PKANDRS;
Creator
An entity primarily responsible for making the resource
Darling A; Tello C; Marti M J; Garrido C; Aguilera-Albesa S; Tomas V M; Gaston I; Madruga M; Gonzalez G L; Ramos L J; Pujol M; Gavilan I T; Tustin K; Lin J P; Zorzi G; Nardocci N; Martorell L; Lorenzo S G; Gutierrez F; Garcia P J; Vela L; Hernandez L C; Ortigoza E J D; Marti S L; Moreira F; Coelho M; Correia G L; Castro C A; Ferreira J; Pires P; Costa C; Rego P; Magalhaes M; Stamelou M; Cuadras P D; Rodriguez-Blazquez C; Martinez-Martin P; Lupo V; Stefanis L; Pons R; Espinos C; Temudo T; Perez D B
Description
An account of the resource
BACKGROUND: Pantothenate kinase-associated neurodegeneration is a progressive neurological disorder occurring in both childhood and adulthood. The objective of this study was to design and pilot-test a disease-specific clinical rating scale for the assessment of patients with pantothenate kinase-associated neurodegeneration. METHODS: In this international cross-sectional study, patients were examined at the referral centers following a standardized protocol. The motor examination was filmed, allowing 3 independent specialists in movement disorders to analyze 28 patients for interrater reliability assessment. The scale included 34 items (maximal score, 135) encompassing 6 subscales for cognition, behavior, disability, parkinsonism, dystonia, and other neurological signs. RESULTS: Forty-seven genetically confirmed patients (30 +/- 17 years; range, 6-77 years) were examined with the scale (mean score, 62 +/- 21; range, 20-106). Dystonia with prominent cranial involvement and atypical parkinsonian features were present in all patients. Other common signs were cognitive impairment, psychiatric features, and slow and hypometric saccades. Dystonia, parkinsonism, and other neurological features had a moderate to strong correlation with disability. The scale showed good internal consistency for the total scale (Cronbach's alpha = 0.87). On interrater analysis, weighted kappa values (0.30-0.93) showed substantial or excellent agreement in 85% of the items. The scale also discriminated a subgroup of homozygous c.1583C>T patients with lower scores, supporting construct validity for the scale. CONCLUSIONS: The proposed scale seems to be a reliable and valid instrument for the assessment of pediatric and adult patients with pantothenate kinase-associated neurodegeneration. Additional validation studies with a larger sample size will be required to confirm the present results and to complete the scale validation testing. © 2017 International Parkinson and Movement Disorder Society.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/mds.27129" target="_blank" rel="noreferrer noopener">10.1002/mds.27129</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
Aged
Aguilera-Albesa S
Behavior
Castro C A
Child
Coelho M
Cognitive Dysfunction/di [Diagnosis]
Cognitive Dysfunction/et [Etiology]
Correia G L
Costa C
Cross-sectional Studies
Cuadras P D
Darling A
Disabled Persons
dystonia/di [Diagnosis]
Dystonia/et [Etiology]
Espinos C
Ferreira J
Garcia P J
Garrido C
Gaston I
Gavilan I T
Gonzalez G L
Gutierrez F
Hernandez L C
Humans
IND
Lin J P
Lorenzo S G
Lupo V
Madruga M
Magalhaes M
Marti M J
Marti S L
Martinez-Martin P
Martorell L
Mental Disorders/di [Diagnosis]
Mental Disorders/et [Etiology]
Middle Aged
Moreira F
Movement Disorders
Nardocci N
Ocular Motility Disorders/di [Diagnosis]
Ocular Motility Disorders/et [Etiology]
Ortigoza E J D
Pantothenate Kinase-Associated Neurodegeneration/co [Complications]
Pantothenate Kinase-Associated Neurodegeneration/di [Diagnosis]
Pantothenate Kinase-Associated Neurodegeneration/ge [Genetics]
Parkinsonian Disorders/di [Diagnosis]
Parkinsonian Disorders/et [Etiology]
Perez D B
Pilot Projects
Pires P
PKANDRS
Pons R
Pujol M
Ramos L J
Rego P
Reproducibility of Results
Rodriguez-Blazquez C
scale development
Severity Of Illness Index
Stamelou M
Stefanis L
Tello C
Temudo T
Tomas V M
tone and motor problems
tool development
Tustin K
Vela L
Young Adult
Zorzi G
-
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/10.1016/j.tips.2005.01.009" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.tips.2005.01.009</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
Individual responder analyses for pain: does one pain scale fit all?
Publisher
An entity responsible for making the resource available
Trends In Pharmacological Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Humans; Reproducibility of Results; P.H.S.; Research Support; U.S. Gov't; Comparative Study; Pain/drug therapy/physiopathology; Clinical Trials/methods/trends; Pain Measurement/drug effects/methods/standards
Creator
An entity primarily responsible for making the resource
Dionne RA; Bartoshuk L; Mogil J; Witter J
Description
An account of the resource
The outcomes of clinical trials are based on the mean responses of large numbers of subjects but fail to address inter-individual differences. The molecular mechanisms that underlie pain vary among individuals over time and among different types of pain to produce wide inter-individual variations in pain perception and response. Gender, ethnicity, temperament and genetic factors also contribute to individual variation in pain sensitivity and responses to analgesics. Pain measurement scales can be used differently across individuals based on the past pain experiences of individuals. We propose that individual responder analyses could be used in clinical trials to better detect analgesic activity across patient groups and within sub-groups, and to identify molecular-genetic mechanisms that contribute to individual variation.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.tips.2005.01.009" target="_blank" rel="noreferrer">10.1016/j.tips.2005.01.009</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
2005
Backlog
Bartoshuk L
Clinical Trials/methods/trends
Comparative Study
Dionne RA
Humans
Journal Article
Mogil J
P.H.S.
Pain Measurement/drug effects/methods/standards
Pain/drug therapy/physiopathology
Reproducibility of Results
Research Support
Trends In Pharmacological Sciences
U.S. Gov't
Witter J
-
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/10.1046/j.1365-2648.1999.01116.x" target="_blank" rel="noreferrer">http://doi.org/10.1046/j.1365-2648.1999.01116.x</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Can the needs of the critically ill child be identified using scenarios? Experiences of a modified Delphi study
Publisher
An entity responsible for making the resource available
Journal Of Advanced Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
1999
Subject
The topic of the resource
Child; Humans; Questionnaires; Pilot Projects; Reproducibility of Results; Delphi Technique; Evaluation Studies; Intensive Care/statistics & numerical data; Critical Illness/nursing; Health Services Needs and Demand/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Endacott R; Clifford CM; Tripp JH
Description
An account of the resource
The Delphi technique enables the structuring of group opinion and discussion using a survey approach, maintaining the anonymity of panel members and preventing contamination of individual responses through peer pressure. The Delphi technique was used by the authors to form an expert opinion regarding the needs of a critically ill child. The abstract and evaluative nature of need was a key issue to arise during early pilot work and stimulated the first author to undertake a concept analysis of the term 'need'. The defining attributes arising from the concept analysis were used to construct two hypothetical case studies for the modified Delphi; these were used as part of the questionnaire for all three rounds. In the first round, the panel was asked to identify the needs of the child in the two case studies; in subsequent rounds the panel activity involved modifying these need statements and indicating the importance, frequency and maximum acceptable delay in meeting each need. Extensive pilot work was required for each round of the modified Delphi. This article evaluates the use of this technique to identify needs, discusses key features arising from the results and examines the difficulties experienced by the respondents in completing the time scales.
1999
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1046/j.1365-2648.1999.01116.x" target="_blank" rel="noreferrer">10.1046/j.1365-2648.1999.01116.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
1999
Backlog
Child
Clifford CM
Critical Illness/nursing
Delphi Technique
Endacott R
Evaluation Studies
Health Services Needs and Demand/statistics & numerical data
Humans
Intensive Care/statistics & numerical data
Journal Article
Journal Of Advanced Nursing
Pilot Projects
Questionnaires
Reproducibility of Results
Tripp JH
-
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/10.1136/bmj.327.7408.195" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmj.327.7408.195</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A systematic review of physicians' survival predictions in terminally ill cancer patients.
Publisher
An entity responsible for making the resource available
Bmj (clinical Research Ed.)
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Humans; Terminally Ill; Survival Analysis; Longitudinal Studies; Reproducibility of Results; Analysis of Variance; Regression Analysis; Empirical Approach; Death and Euthanasia; decision making; Charting the Territory; Neoplasms/mortality; Clinical Competence/standards; Physicians/standards
Creator
An entity primarily responsible for making the resource
Glare P; Virik K; Jones M; Hudson M; Eychmuller S; Simes J; Christakis NA
Description
An account of the resource
OBJECTIVE: To systematically review the accuracy of physicians' clinical predictions of survival in terminally ill cancer patients. DATA SOURCES: Cochrane Library, Medline (1996-2000), Embase, Current Contents, and Cancerlit databases as well as hand searching. STUDY SELECTION: Studies were included if a physician's temporal clinical prediction of survival (CPS) and the actual survival (AS) for terminally ill cancer patients were available for statistical analysis. Study quality was assessed by using a critical appraisal tool produced by the local health authority. DATA SYNTHESIS: Raw data were pooled and analysed with regression and other multivariate techniques. RESULTS: 17 published studies were identified; 12 met the inclusion criteria, and 8 were evaluable, providing 1563 individual prediction-survival dyads. CPS was generally overoptimistic (median CPS 42 days, median AS 29 days); it was correct to within one week in 25% of cases and overestimated survival by at least four weeks in 27%. The longer the CPS the greater the variability in AS. Although agreement between CPS and AS was poor (weighted kappa 0.36), the two were highly significantly associated after log transformation (Spearman rank correlation 0.60, P < 0.001). Consideration of performance status, symptoms, and use of steroids improved the accuracy of the CPS, although the additional value was small. Heterogeneity of the studies' results precluded a comprehensive meta-analysis. CONCLUSIONS: Although clinicians consistently overestimate survival, their predictions are highly correlated with actual survival; the predictions have discriminatory ability even if they are miscalibrated. Clinicians caring for patients with terminal cancer need to be aware of their tendency to overestimate survival, as it may affect patients' prospects for achieving a good death. Accurate prognostication models incorporating clinical prediction of survival are needed.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmj.327.7408.195" target="_blank" rel="noreferrer">10.1136/bmj.327.7408.195</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
2003
Analysis of Variance
Backlog
Bmj (clinical Research Ed.)
Christakis NA
Clinical Competence/standards
Death and Euthanasia
Decision Making
Empirical Approach
Eychmuller S
Glare P
Hudson M
Humans
Jones M
Journal Article
Longitudinal Studies
Neoplasms/mortality
Physicians/standards
Regression Analysis
Reproducibility of Results
Simes J
Survival Analysis
Terminally Ill
Virik K
-
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/10.1177/000992280304200206" target="_blank" rel="noreferrer">http://doi.org/10.1177/000992280304200206</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
Parents' evaluation of developmental status: how well do parents' concerns identify children with behavioral and emotional problems?
Publisher
An entity responsible for making the resource available
Clinical Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Child; Female; Humans; Male; Parents; Age Factors; Socioeconomic Factors; Risk Factors; Reproducibility of Results; Predictive Value of Tests; Preschool; infant; Child Behavior Disorders/diagnosis/etiology; Affective Symptoms/diagnosis/etiology; Developmental Disabilities/diagnosis/etiology
Creator
An entity primarily responsible for making the resource
Glascoe FP
Description
An account of the resource
This study was undertaken to determine which parental concerns are most associated with significant behavioral/emotional problems and the extent to which parents' concerns can be depended on in the detection of mental health problems. An additional goal is to view how well a recently published screening test relying on parents' concerns, Parents' Evaluation of Developmental Status (PEDS), detects behavioral and emotional problems. Subjects were a national sample of 472 parents and their children (21 months to 8 years old) who were participants in 1 of 2 test standardization and validation studies. Sites included various pediatric settings, public schools, and Head Start programs in 5 diverse geographic locations. Subjects were representative of U.S. demographics in terms of ethnicity, parental level of education, gender, and socioeconomic status. At each site, psychological examiners, educational diagnosticians, or school psychologists recruited families, and obtained informed consent. Examiners disseminated a demographics questionnaire (in English or Spanish) and a developmental screening test that relies on parents' concerns (PEDS). Examiners were blinded to PEDS' scoring and interpretation administered either by interview or in writing, the Eyberg Child Behavior Inventory (ECBI) or the Possible Problems Checklist (PPC), a subtest of the Child Development Inventory that includes items measuring emotional well-being and behavioral self-control. PEDS was used to sort children into risk for developmental disabilities according to various types of parental concern. Those identified as having high or moderate risk were nominated for diagnostic testing or screening followed by developmental and mental health services when indicated. Because their emotional and behavioral needs would have been identified and addressed, these groups were removed from the analysis (N = 177). Of the 295 children who would not have been nominated for further scrutiny on PEDS due to their low risk of developmental problems, 102 had parents with concerns not predictive of developmental disabilities (e.g., behavior, social skills, self-help skills) and 193 had no concerns at all. Of the 295 children, 12% had scores on either the ECBI or the PPC indicative of mental health problems. Two parental concerns were identified through logistic regression as predictive of mental health status: behavior (OR = 4.74, CI = 1.69-13.30); and social skills (OR = 5.76, CI = 2.46-13.50). If one or more of these concerns was present, children had 8.5 times the risk of mental health problems (CI = 3.69-19.71) In children 434 years of age and older, one or both concerns was 87% sensitive and 79% specific to mental health status, figures keeping with standards for screening test accuracy. In young children, the presence of one or both concerns was 68% sensitive and 66% specific to mental health status. The findings suggest that certain parental concerns, if carefully elicited, can be depended on to detect mental health problems when children are 41 years and older and at low risk of developmental problems. For younger children, clinicians should counsel parents in disciplinary techniques, follow up, and if suggestions were not effective, administer a behavioral-emotional screening test such as the Pediatric Symptoms Checklist or the ECBI before making a referral decision.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/000992280304200206" target="_blank" rel="noreferrer">10.1177/000992280304200206</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
2003
Affective Symptoms/diagnosis/etiology
Age Factors
Backlog
Child
Child Behavior Disorders/diagnosis/etiology
Clinical Pediatrics
Developmental Disabilities/diagnosis/etiology
Female
Glascoe FP
Humans
Infant
Journal Article
Male
Parents
Predictive Value of Tests
Preschool
Reproducibility of Results
Risk Factors
Socioeconomic Factors
-
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/10.1007/s11126-006-9034-7" target="_blank" rel="noreferrer">http://doi.org/10.1007/s11126-006-9034-7</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
Posttraumatic growth in treatment-seeking female assault victims
Publisher
An entity responsible for making the resource available
The Psychiatric Quarterly
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Female; Humans; Adult; Health Status; Outcome Assessment (Health Care); Life Change Events; Reproducibility of Results; Personality Inventory; Diagnostic and Statistical Manual of Mental Disorders; Adaptation; Psychological; Models; Parent caregivers; Depressive Disorder/diagnosis/psychology; Psychiatric Status Rating Scales; Stress Disorders; Post-Traumatic/diagnosis/psychology; Educational Status; Patient Acceptance of Health Care/psychology; Rape/psychology; Violence/psychology
Creator
An entity primarily responsible for making the resource
Grubaugh AL; Resick PA
Description
An account of the resource
The importance of measuring growth outcomes following a traumatic event has been highlighted in recent literature (e.g., Linley, Joseph: Journal of Traumatic Stress 17:11-21, 2004). Although reports of growth are abundant, the relationship between growth outcomes and post-trauma distress remains unclear, with studies yielding conflicting results regarding this relationship. The purpose of the present study was to explore the interrelationships among growth outcomes and measures of depression and posttraumatic stress disorder (PTSD) among 100 female treatment-seeking physical and sexual assault victims. Although the majority of women reported some degree of growth in this study, and growth scores were comparable to those from other samples, measures of depression and PTSD were not significantly related to growth scores. The implication of these findings and future direction for research are discussed.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s11126-006-9034-7" target="_blank" rel="noreferrer">10.1007/s11126-006-9034-7</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
2007
Adaptation
Adult
Backlog
Depressive Disorder/diagnosis/psychology
Diagnostic and Statistical Manual of Mental Disorders
Educational Status
Female
Grubaugh AL
Health Status
Humans
Journal Article
Life Change Events
Models
Outcome Assessment (health Care)
Parent caregivers
Patient Acceptance of Health Care/psychology
Personality Inventory
Post-Traumatic/diagnosis/psychology
Psychiatric Status Rating Scales
Psychological
Rape/psychology
Reproducibility of Results
Resick PA
Stress Disorders
The Psychiatric Quarterly
Violence/psychology
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
November 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
November 2019 List
URL Address
<a href="http://doi.org/10.1111/dmcn.14045" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.14045</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
Reliability and predictive validity of the Standardized Infant NeuroDevelopmental Assessment neurological scale
Publisher
An entity responsible for making the resource available
Developmental Medicine and Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Severity of Illness Index; Diagnostic Techniques; Female; Humans; Infant; Longitudinal Studies; Male; Neurodevelopmental Disorders/diagnosis; Neurological/standards; Reproducibility of Results
Creator
An entity primarily responsible for making the resource
Hadders-Algra M; Tacke U; Pietz J; Rupp A; Philippi H
Description
An account of the resource
AIM: To assess reliability and predictive validity of the neurological scale of the Standardized Infant NeuroDevelopmental Assessment (SINDA), a recently developed assessment for infants aged 6 weeks to 12 months. METHOD: To assess reliability, three assessors independently rated video-recorded neurological assessments of 24 infants twice. Item difficulty and discrimination were determined. To evaluate predictive validity, 181 infants (median gestational age 30wks [range 22-41wks]; 92 males, 89 females) attending a non-academic outpatient clinic were assessed with SINDA's neurological scale (28 dichotomized items). Atypical neurodevelopmental outcome at 24 months or older corrected age implied a Bayley Mental Developmental Index or Psychomotor Developmental Index lower than 70 or a diagnosis of cerebral palsy (CP). Predictive values were calculated from SINDA (2-12mo corrected age, median 3mo) and typical versus atypical outcome. RESULTS: Intraclass correlation coefficients of intrarater and interrater agreement of the neurological score varied between 0.923 and 0.965. Item difficulty and discrimination were satisfactory. At 24 months or older, 56 children (31%) had an atypical outcome (29 had CP). Atypical neurological scores (below 25th centile,
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/dmcn.14045" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14045</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
Developmental Medicine and Child Neurology
Diagnostic Techniques
Female
Hadders-Algra M
Humans
Infant
Longitudinal Studies
Male
Neurodevelopmental Disorders/diagnosis
Neurological/standards
November 2019 List
Philippi H
Pietz J
Reproducibility of Results
Rupp A
Severity Of Illness Index
Tacke U
-
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/10.1006/jado.2000.0393" target="_blank" rel="noreferrer">http://doi.org/10.1006/jado.2000.0393</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
Subjective health complaints in adolescence--reliability and validity of survey methods
Publisher
An entity responsible for making the resource available
Journal Of Adolescence
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Female; Humans; Male; Adolescent Psychology; Interviews as Topic; Mental Health; Reproducibility of Results; Psychometrics; Health Status Indicators; Chi-Square Distribution; adolescent; Norway/epidemiology
Creator
An entity primarily responsible for making the resource
Haugland S; Wold B
Description
An account of the resource
This paper studies test-retest reliability and validity of one measure of adolescent health complaints. The test-retest included an eight-item symptom checklist developed for the survey of Health Behaviour in School-aged Children (n=344). Qualitative analysis showed adequate validity for most items. For the total sample, all items were found to have adequate intraclass correlation coefficients (ICC) in the range 0.61-0.75. There were inter-item differences and girls generally received the higher values. Most changes were within one category. Adolescents' understanding of 16 complaints was studied by interviews with 38 adolescents. A few items showed ambiguity in interviews despite adequate test-retest stability.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1006/jado.2000.0393" target="_blank" rel="noreferrer">10.1006/jado.2000.0393</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
2001
Adolescent
Adolescent Psychology
Backlog
Chi-Square Distribution
Female
Haugland S
Health Status Indicators
Humans
Interviews As Topic
Journal Article
Journal Of Adolescence
Male
Mental Health
Norway/epidemiology
Psychometrics
Reproducibility of Results
Wold 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/10.1016/s0304-3959(01)00314-1" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0304-3959(01)00314-1</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The Faces Pain Scale-Revised: toward a common metric in pediatric pain measurement
Publisher
An entity responsible for making the resource available
Pain
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Child; Humans; Adult; Communication; Child Psychology; Reproducibility of Results; Preschool; Biomarkers of Pain; Biomarkers Reference List; Face; Pain Measurement/standards; Pain/diagnosis/psychology
Creator
An entity primarily responsible for making the resource
Hicks CL; von Baeyer CL; Spafford PA; van Korlaar I; Goodenough B
Description
An account of the resource
The Faces Pain Scale (FPS; Bieri et al., Pain 41 (1990) 139) is a self-report measure used to assess the intensity of children's pain. Three studies were carried out to revise the original scale and validate the adapted version. In the first phase, the FPS was revised from its original seven faces to six, while maintaining its desirable psychometric properties, in order to make it compatible in scoring with other self-rating and observational scales which use a common metric (0-5 or 0-10). Using a computer-animated version of the FPS developed by Champion and colleagues (Sydney Animated Facial Expressions Scale), psychophysical methods were applied to identify four faces representing equal intervals between the scale values representing least pain and most pain. In the second phase, children used the new six-face Faces Pain Scale-Revised (FPS-R) to rate the intensity of pain from ear piercing. Its validity is supported by a strong positive correlation (r=0.93, N=76) with a visual analogue scale (VAS) measure in children aged 5-12 years. In the third phase, a clinical sample of pediatric inpatients aged 4-12 years used the FPS-R and a VAS or the colored analogue scale (CAS) to rate pain during hospitalization for surgical and non-surgical painful conditions. The validity of the FPS-R was further supported by strong positive correlations with the VAS (r=0.92, N=45) and the CAS (r=0.84, N=45) in this clinical sample. Most children in all age groups including the youngest were able to use the FPS-R in a manner that was consistent with the other measures. There were no significant differences between the means on the FPS-R and either of the analogue scales. The FPS-R is shown to be appropriate for use in assessment of the intensity of children's acute pain from age 4 or 5 onward. It has the advantage of being suitable for use with the most widely used metric for scoring (0-10), and conforms closely to a linear interval scale.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0304-3959(01)00314-1" target="_blank" rel="noreferrer">10.1016/s0304-3959(01)00314-1</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).
Type
The nature or genre of the resource
Journal Article
2001
Adult
Backlog
Biomarkers of Pain
Biomarkers Reference List
Child
Child Psychology
Communication
Face
Goodenough B
Hicks CL
Humans
Journal Article
Pain
Pain Measurement/standards
Pain/diagnosis/psychology
Preschool
Reproducibility of Results
Spafford PA
van Korlaar I
von Baeyer CL
-
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/10.1177/0193945906295533" target="_blank" rel="noreferrer">http://doi.org/10.1177/0193945906295533</a>
<a href="http://wjn.sagepub.com.ezproxy.library.ubc.ca/content/29/4/448" target="_blank" rel="noreferrer">http://wjn.sagepub.com.ezproxy.library.ubc.ca/content/29/4/448</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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Conducting End-of-Life Studies in Pediatric Oncology
Publisher
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Western Journal Of Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Humans; Terminal Care; Pediatrics; Pediatric Nursing; Longitudinal Studies; Reproducibility of Results; Oncology at EOL; Pediatric oncology; Clinical Nursing Research; dying children and adolescents; end-of-life research; Oncologic Nursing/ethics
Creator
An entity primarily responsible for making the resource
Hinds PS; Burghen E; Pritchard M
Description
An account of the resource
Improving our ability to prevent or diminish suffering in dying children and adolescents and their families is dependent on the completion of high-quality pediatric end-of-life studies. The purpose of this article is to provide useful evidence-based strategies that have been used to implement and complete clinically useful pediatric end-of-life studies in oncology. The article describes specific peer-review and methodological challenges and links those to evidence-based solutions. The challenges and solutions described in this article are from eight end-of-life studies involving pediatric oncology patients. It is hoped that the solutions described here will benefit others in their efforts to implement pediatric end-of-life studies so that clinically useful findings will result and will improve the care of dying children and adolescents.
2007-06
Identifier
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<a href="http://doi.org/10.1177/0193945906295533" target="_blank" rel="noreferrer">10.1177/0193945906295533</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).
Type
The nature or genre of the resource
Journal Article
2007
Backlog
Burghen E
Clinical Nursing Research
dying children and adolescents
end-of-life research
Hinds PS
Humans
Journal Article
Longitudinal Studies
Oncologic Nursing/ethics
Oncology at EOL
Pediatric Nursing
Pediatric Oncology
Pediatrics
Pritchard M
Reproducibility of Results
Terminal Care
Western Journal of Nursing Research
-
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/10.1017/s0012162204000039" target="_blank" rel="noreferrer">http://doi.org/10.1017/s0012162204000039</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
Clinical validation of the paediatric pain profile
Publisher
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Developmental Medicine And Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Child; Female; Humans; Male; Sensitivity and Specificity; Analgesia; Reproducibility of Results; Communication Disorders; adolescent; Preschool; Non-U.S. Gov't; Research Support; infant; Q3 Literature Search; Nervous System Diseases/complications; disabled children; Pain Measurement/methods; Operative; Surgical Procedures
Creator
An entity primarily responsible for making the resource
Hunt A; Goldman A; Seers K; Crichton N; Mastroyannopoulou K; Moffat V; Oulton K; Brady M
Description
An account of the resource
The Paediatric Pain Profile (PPP) is a 20-item behaviour rating scale designed to assess pain in children with severe neurological disability. We assessed the validity and reliability of the scale in 140 children (76 females, mean age 9 years 11 months, SD 4 years 7 months; range 1 to 18 years), unable to communicate through speech or augmentative communication. Parents used the PPP to rate retrospectively their child's behaviour when 'at their best' and when in pain. To assess interrater reliability, two raters concurrently observed and individually rated each child's behaviour. To assess construct validity and responsiveness of the scale, behaviour of 41 children was rated before and for four hours after administration of an 'as required' analgesic. Behaviour of 30 children was rated before surgery and for five days after. Children had significantly higher scores when reported to have pain than 'at their best' and scores increased in line with global evaluations of pain. Internal consistency ranged from 0.75 to 0.89 (Cronbach's alpha) and interrater reliability from 0.74 to 0.89 (intraclass correlation). Sensitivity (1.00) and specificity (0.91) were optimized at a cut-off of 14/60. PPP score was significantly greater before administration of the analgesic than after (paired-sample t-tests, p<0.001). Though there was no significant difference in mean pre- and postoperative scores, highest PPP score occurred in the first 24 hours after surgery in 14 (47%) children. Results suggest that the PPP is reliable and valid and has potential for use both clinically and in intervention research.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/s0012162204000039" target="_blank" rel="noreferrer">10.1017/s0012162204000039</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).
Type
The nature or genre of the resource
Journal Article
2004
Adolescent
Analgesia
Backlog
Brady M
Child
Communication Disorders
Crichton N
Developmental Medicine and Child Neurology
Disabled Children
Female
Goldman A
Humans
Hunt A
Infant
Journal Article
Male
Mastroyannopoulou K
Moffat V
Nervous System Diseases/complications
Non-U.S. Gov't
Operative
Oulton K
Pain Measurement/methods
Preschool
Q3 Scoping Review Results
Reproducibility of Results
Research Support
Seers K
Sensitivity and Specificity
Surgical Procedures
-
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/10.1016/j.jpainsymman.2006.08.011" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2006.08.011</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
Development of the paediatric pain profile: role of video analysis and saliva cortisol in validating a tool to assess pain in children with severe neurological disability
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Child; Female; Humans; Male; Reproducibility of Results; Child Behavior; adolescent; Preschool; Biomarkers of Pain; Hydrocortisone/metabolism; Nervous System Diseases/complications/metabolism/psychology; Pain Measurement/methods; Pain/etiology/metabolism/psychology; Saliva/metabolism; Videotape Recording
Creator
An entity primarily responsible for making the resource
Hunt A; Wisbeach A; Seers K; Goldman A; Crichton N; Perry L; Mastroyannopoulou K
Description
An account of the resource
The Paediatric Pain Profile (PPP) is a 20-item behavior-rating scale designed to assess pain in children with severe to profound neurological impairment. Three raters independently used the PPP to rate behavior of 29 children (mean age 9.6, SD 5.8) filmed during everyday morning activities. The validation process included assessment of interrater reliability and exploration of the relationship of PPP scores with saliva cortisol concentration. There was substantial agreement between raters. The PPP showed strong association with global pain assessments and differentiated between preselected high- and low-pain groups. PPP score showed moderate correlation with saliva cortisol concentration, but a single child explained the strength of the relationship and overall, saliva cortisol concentrations appeared low. The data provide additional evidence that the PPP is a reliable and valid instrument for pain assessment in neurologically impaired children. Cortisol levels are not a useful criterion for pain in this population and further study of cortisol response to stress/pain in children with severe neurological impairments is needed.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2006.08.011" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2006.08.011</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
2007
Adolescent
Backlog
Biomarkers of Pain
Child
Child Behavior
Crichton N
Female
Goldman A
Humans
Hunt A
Hydrocortisone/metabolism
Journal Article
Journal of Pain and Symptom Management
Male
Mastroyannopoulou K
Nervous System Diseases/complications/metabolism/psychology
Pain Measurement/methods
Pain/etiology/metabolism/psychology
Perry L
Preschool
Reproducibility of Results
Saliva/metabolism
Seers K
Videotape Recording
Wisbeach A
-
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/10.1016/s0885-3924(00)00171-8" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0885-3924(00)00171-8</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
An evaluation of the Faces Pain Scale with young children
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Child; Female; Humans; Male; Reproducibility of Results; Facial Expression; Preschool; Non-U.S. Gov't; Research Support; Pain Measurement/methods/psychology
Creator
An entity primarily responsible for making the resource
Hunter M; McDowell L; Hennessy R; Cassey J
Description
An account of the resource
The psychometric characteristics of the Faces Pain Scale (FPS) were evaluated in three groups of preschool and school-aged children (3. 5-4.5; 4.5-5.5 and 5.5-6.5 years, respectively). The FPS was adequately comprehended by even young children. It was easily administered and was valid and discriminating. It did not, however, possess the linear scalability claimed by its authors.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0885-3924(00)00171-8" target="_blank" rel="noreferrer">10.1016/s0885-3924(00)00171-8</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
2000
Backlog
Cassey J
Child
Facial Expression
Female
Hennessy R
Humans
Hunter M
Journal Article
Journal of Pain and Symptom Management
Male
McDowell L
Non-U.S. Gov't
Pain Measurement/methods/psychology
Preschool
Reproducibility of Results
Research Support
-
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/10.1002/pon.1026" target="_blank" rel="noreferrer">http://doi.org/10.1002/pon.1026</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
Psychometric properties of the Dutch version of the posttraumatic growth inventory among cancer patients
Publisher
An entity responsible for making the resource available
Psycho-oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Female; Humans; Male; Adult; Emotions; Aged; Middle Aged; Netherlands; Reproducibility of Results; 80 and over; Adaptation; Psychological; Statistical; Psychological Tests; Parent caregivers; Stress Disorders; Neoplasms/psychology; Factor Analysis; Human Development; Post-Traumatic/diagnosis/psychology
Creator
An entity primarily responsible for making the resource
Jaarsma TA; Pool G; Sanderman R; Ranchor AV
Description
An account of the resource
In the current study, we investigated the psychometric properties of a Dutch translation of the posttraumatic growth inventory in a heterogeneous group of cancer patients. Its original five-factor structure was maintained. The internal consistency of the total scale, as well as its subdimensions, was satisfactory. As expected, the experience of posttraumatic growth was positively related to: emotional expression about the illness, openness to experience, and feelings of innerness. Furthermore, the scale appeared to be sensitive for the demographics age and gender. The experience of posttraumatic growth was not related to negative feelings such as avoidance, anxiety, depression, and neuroticism. Our Dutch translation of the instrument appeared to be a sound measure for the experience of posttraumatic growth in cancer patients.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pon.1026" target="_blank" rel="noreferrer">10.1002/pon.1026</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
2006
80 And Over
Adaptation
Adult
Aged
Backlog
Emotions
Factor Analysis
Female
Human Development
Humans
Jaarsma TA
Journal Article
Male
Middle Aged
Neoplasms/psychology
Netherlands
Parent caregivers
Pool G
Post-Traumatic/diagnosis/psychology
Psycho-Oncology
Psychological
Psychological Tests
Ranchor AV
Reproducibility of Results
Sanderman R
statistical
Stress Disorders
-
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/10.1111/dmcn.12226" target="_blank" rel="noreferrer">http://doi.org/10.1111/dmcn.12226</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A systematic review of activities of daily living measures for children and adolescents with cerebral palsy
Publisher
An entity responsible for making the resource available
Developmental Medicine And Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Child; Female; Humans; Male; Cerebral Palsy; Activities of Daily Living; Reproducibility of Results; Psychometrics; Disability Evaluation; PEDI Study
Creator
An entity primarily responsible for making the resource
James S; Ziviani J; Boyd R
Description
An account of the resource
AIM: This study aimed to systematically review the psychometric properties and clinical utility of measures of activities of daily living (ADL) for children with cerebral palsy (CP) aged 5 to 18 years. METHOD: Five electronic databases were searched to identify available ADL measures with published psychometric data for school-aged children with CP. Measures were included if at least 60% of the items addressed ADL in the full assessment or in an independent domain. A modified CanChild Outcome Rating Form was used to report the validity, reliability, responsiveness, and clinical utility of the measures. RESULTS: Twenty-six measures were identified and eight met inclusion criteria. The Pediatric Evaluation of Disability Inventory (PEDI) had the strongest psychometric properties but was limited by its age range. The Assessment of Motor and Process Skills (AMPS) was the most comprehensive evaluation of underlying motor and cognitive abilities yet further psychometric testing is required for children with CP. INTERPRETATION: The PEDI should be used to measure ADL capability in elementary school aged children. The AMPS is the best measure to evaluate ADL performance or capacity and is suitable for all ages. Future research should examine the reliability of the AMPS to determine its stability in children and adolescents with CP.
2014-03
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/dmcn.12226" target="_blank" rel="noreferrer">10.1111/dmcn.12226</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
2014
Activities of Daily Living
Adolescent
Backlog
Boyd R
Cerebral Palsy
Child
Developmental Medicine and Child Neurology
Disability Evaluation
Female
Humans
James S
Journal Article
Male
PEDI Study
Psychometrics
Reproducibility of Results
Ziviani J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1002/ajmg.a.31623" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ajmg.a.31623</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
Behavioral problems in relation to intelligence in children with 22q11.2 deletion syndrome: a matched control study
Publisher
An entity responsible for making the resource available
American Journal of Medical Genetics Part A
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Male; Case-Control Studies; Child; Humans; Child Behavior Disorders/psychology; Female; Reproducibility of Results; Syndrome; Psychometrics/methods; Chromosome Deletion; Chromosomes Human Pair 22; Intelligence; Abnormalities Multiple/genetics/pathology/psychology; Craniofacial Abnormalities/psychology; behavioral problems; 22q11.2 deletion syndrome; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Jansen P W; Duijff S N; Beemer F A; Vorstman J A; Klaassen P W; Morcus M E; Heineman-de B J A
Description
An account of the resource
The 22q11.2 deletion syndrome (22q11DS) is a genetic disorder associated with palatal abnormalities, cardiac defects, a characteristic facial appearance, learning difficulties, and delays in speech and language development. Various behavioral disorders and psychiatric illnesses have also been reported. There is much debate as to whether the behavioral problems are caused by factors such as medical discomfort, facial abnormalities or a lower intelligence, or whether they are independently related to the genetic abnormality ("behavioral phenotype"). We examined the relationship between intelligence level and behavioral problems. A group of 69 children with 22q11DS was compared with 69 children with craniofacial anomalies (CFA) using the child behavior checklist (CBCL). The matches between individual children were based on their total IQ scores. Use of the CBCL norm scores covered the corrections for age and sex. The group of 22q11DS children showed significantly more behavioral problems than the CFA group: this was especially apparent on the CBCL subscales "withdrawn," "anxious/depressed," "delinquent behavior," "aggressive behavior," "somatic complaints," and "social problems." We found no correlation between IQ score and behavioral problems in the 22q11DS group, which was remarkable because, comparable with the general population, intellectual disabilities were a predictor of behavioral problems in the CFA group. 22q11DS children with relatively higher IQs showed more problems of an internalizing than an externalizing nature, whereas the 22q11DS children with lower IQs showed various behavioral problems. The absence of a statistically significant correlation between intelligence and behavior problems in the group of 22q11DS children is tentative evidence for a 22q11DS behavioral phenotype.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ajmg.a.31623" target="_blank" rel="noreferrer noopener">10.1002/ajmg.a.31623</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).
2007
22q11.2 Deletion Syndrome
Abnormalities Multiple/genetics/pathology/psychology
American Journal of Medical Genetics Part A
Beemer F A
behavioral problems
Case-Control Studies
characteristics
Child
Child Behavior Disorders/psychology
Chromosome Deletion
Chromosomes Human Pair 22
Craniofacial Abnormalities/psychology
Duijff S N
Female
Heineman-de B J A
Humans
Intelligence
Jansen P W
Klaassen P W
Male
Morcus M E
Psychometrics/methods
Reproducibility of Results
Syndrome
Trajectory
Vorstman J A
-
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/10.1111/j.1365-2648.2006.03716.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1365-2648.2006.03716.x</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Consulting the oracle: ten lessons from using the Delphi technique in nursing research
Publisher
An entity responsible for making the resource available
Journal Of Advanced Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Humans; Consensus; Research Design; Reproducibility of Results; Delphi Technique; Adolescent Transitions; Nursing Research/methods
Creator
An entity primarily responsible for making the resource
Keeney S; Hasson F; McKenna H
Description
An account of the resource
AIM: The aim of this paper was to provide insight into the Delphi technique by outlining our personal experiences during its use over a 10-year period in a variety of applications. BACKGROUND: As a means of achieving consensus on an issue, the Delphi research method has become widely used in healthcare research generally and nursing research in particular. The literature on this technique is expanding, mainly addressing what it is and how it should be used. However, there is still much confusion and uncertainty surrounding it, particularly about issues such as modifications, consensus, anonymity, definition of experts, how 'experts' are selected and how non-respondents are pursued. DISCUSSION: This issues that arise when planning and carrying out a Delphi study include the definition of consensus; the issue of anonymity vs. quasi-anonymity for participants; how to estimate the time needed to collect the data, analyse each 'round', feed back results to participants, and gain their responses to this feedback; how to define and select the 'experts' who will be asked to participate; how to enhance response rates; and how many 'rounds' to conduct. CONCLUSION: Many challenges and questions are raised when using the Delphi technique, but there is no doubt that it is an important method for achieving consensus on issues where none previously existed. Researchers need to adapt the method to suit their particular study.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1365-2648.2006.03716.x" target="_blank" rel="noreferrer">10.1111/j.1365-2648.2006.03716.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2006
Adolescent Transitions
Backlog
Consensus
Delphi Technique
Hasson F
Humans
Journal Article
Journal Of Advanced Nursing
Keeney S
McKenna H
Nursing Research/methods
Reproducibility of Results
Research Design
-
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/10.1016/s0020-7489(00)00044-4" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0020-7489(00)00044-4</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A critical review of the Delphi technique as a research methodology for nursing
Publisher
An entity responsible for making the resource available
International Journal Of Nursing Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Humans; decision making; Communication; Group Processes; Reproducibility of Results; Delphi Technique; Organizational; Research Design/standards; Data Collection/methods/standards; Nursing Research/methods/standards; Questionnaires/standards
Creator
An entity primarily responsible for making the resource
Keeney S; Hasson F; McKenna HP
Description
An account of the resource
The Delphi technique is an approach used to gain consensus among a panel of experts. This is normally achieved through a series of rounds where information is fed back to panel members using questionnaires. It has been used extensively within social science research and is being increasingly employed by nurse researchers. This popularity has meant that the technique has been adapted in various ways and there is the possibility that the rigour associated with the original format has been threatened. This signals the need for a critical review of the Delphi as a robust and systematic approach to data collection. While there is a great volume of literature surrounding the "Delphi", there is a dearth of papers critically analysing the technique. This paper aims to examine critically the Delphi technique from a range of perspectives. Discussion will focus on problems of definition and the advantages and disadvantages and the techniques' application in nursing. The critique will be structured through an analysis of the key aspects of the Delphi process. These key aspects include analysis of sampling, anonymity, use of experts, rounds and application. The critical analysis highlights the increasing popularity of the Delphi and the modifications to the process which may cause methodological problems. Ultimately, the Delphi has much to offer in terms of gaining consensus from a wide range of individuals on specific topics.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0020-7489(00)00044-4" target="_blank" rel="noreferrer">10.1016/s0020-7489(00)00044-4</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).
Type
The nature or genre of the resource
Journal Article
2001
Backlog
Communication
Data Collection/methods/standards
Decision Making
Delphi Technique
Group Processes
Hasson F
Humans
International Journal Of Nursing Studies
Journal Article
Keeney S
McKenna HP
Nursing Research/methods/standards
Organizational
Questionnaires/standards
Reproducibility of Results
Research Design/standards
-
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/10.1089/jpm.2012.0183" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2012.0183</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The effectiveness of a self-reporting bedside pain assessment tool for oncology inpatients
Publisher
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Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Female; Humans; Male; Neoplasms; Pain Measurement; Adult; Prospective Studies; Aged; Middle Aged; Patient Satisfaction; Reproducibility of Results; Self Report; 80 and over; Republic of Korea
Creator
An entity primarily responsible for making the resource
Kim EB; Han Hye-Suk; Chung JH; Park BR; Lim Sung-Nam; Yim KH; Shin YD; Lee KH; Kim Wun-Jae; Kim ST
Description
An account of the resource
BACKGROUND: Pain is common during cancer treatment, and patient self-reporting of pain is an essential first step for ideal cancer pain management. However, many studies on cancer pain management report that, because pain may be underestimated, it is often inadequately managed. OBJECTIVE: The aim of this study was to evaluate the effectiveness of bedside self-assessment of pain intensity for inpatients using a self-reporting pain board. METHODS: Fifty consecutive inpatients admitted to the Oncology Department of Chungbuk National University Hospital were included in this observational prospective study from February 2011 to December 2011. The medical staff performed pain assessments by asking patients questions and using verbal rated scales (VRS) over 3 consecutive days. Then, for 3 additional days, patients used a self-reporting pain board attached to the bed, which had movable indicators representing 0-10 on a numeric rating scale (NRS) and the frequency of breakthrough pain. RESULTS: Patient reliability over the medical staff's pain assessment increased from 74% to 96% after applying the self-reporting pain board (p=0.004). The gap (mean±standard deviation [SD]) between the NRS reported by patients and the NRS recorded on the medical records decreased from 3.16±2.08 to 1.00±1.02 (p<0.001), and the level of patient satisfaction with pain management increased from 54% to 82% (p=0.002). CONCLUSION: This study suggests that the self-reporting bedside pain assessment tool provides a reliable and effective means of assessing pain in oncology inpatients.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2012.0183" target="_blank" rel="noreferrer">10.1089/jpm.2012.0183</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).
Type
The nature or genre of the resource
Journal Article
2012
80 And Over
Adult
Aged
Backlog
Chung JH
Female
Han Hye-Suk
Humans
Journal Article
Journal of Palliative Medicine
Kim EB
Kim ST
Kim Wun-Jae
Lee KH
Lim Sung-Nam
Male
Middle Aged
Neoplasms
Pain Measurement
Park BR
Patient Satisfaction
Prospective Studies
Reproducibility of Results
Republic of Korea
Self Report
Shin YD
Yim KH
-
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/10.1186/1471-2288-12-80" target="_blank" rel="noreferrer">http://doi.org/10.1186/1471-2288-12-80</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The quality of the evidence base for clinical pathway effectiveness: room for improvement in the design of evaluation trials.
Publisher
An entity responsible for making the resource available
Bmc Medical Research Methodology
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Humans; Length of Stay; Risk Assessment; Clinical Trials as Topic; Reproducibility of Results; Randomized Controlled Trials as Topic; Bias (Epidemiology); Meta-Analysis as Topic; Evidence-Based Medicine; Selection Bias; Critical Pathways/st [Standards]; Guidelines as Topic; Outcome and Process Assessment (Health Care); Research Design/st [Standards]
Creator
An entity primarily responsible for making the resource
Kinsman L; James E; Machotta A; Steyerberg EW
Description
An account of the resource
BACKGROUND: The purpose of this article is to report on the quality of the existing evidence base regarding the effectiveness of clinical pathway (CPW) research in the hospital setting. The analysis is based on a recently published Cochrane review of the effectiveness of CPWs., METHODS: An integral component of the review process was a rigorous appraisal of the methodological quality of published CPW evaluations. This allowed the identification of strengths and limitations of the evidence base for CPW effectiveness. We followed the validated Cochrane Effective Practice and Organisation of Care Group (EPOC) criteria for randomized and non-randomized clinical pathway evaluations. In addition, we tested the hypotheses that simple pre-post studies tend to overestimate CPW effects reported., RESULTS: Out of the 260 primary studies meeting CPW content criteria, only 27 studies met the EPOC study design criteria, with the majority of CPW studies (more than 70%) excluded from the review on the basis that they were simple pre-post evaluations, mostly comparing two or more annual patient cohorts. Methodologically poor study designs are often used to evaluate CPWs and this compromises the quality of the existing evidence base., CONCLUSIONS: Cochrane EPOC methodological criteria, including the selection of rigorous study designs along with detailed descriptions of CPW development and implementation processes, are recommended for quantitative evaluations to improve the evidence base for the use of CPWs in hospitals.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1471-2288-12-80" target="_blank" rel="noreferrer">10.1186/1471-2288-12-80</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
2012
Backlog
Bias (Epidemiology)
Bmc Medical Research Methodology
Clinical Trials as Topic
Critical Pathways/st [Standards]
Evidence-based Medicine
Guidelines As Topic
Humans
James E
Journal Article
Kinsman L
Length Of Stay
Machotta A
Meta-Analysis as Topic
Outcome And Process Assessment (health Care)
Randomized Controlled Trials as Topic
Reproducibility of Results
Research Design/st [Standards]
Risk Assessment
Selection Bias
Steyerberg EW
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1016/j.nmd.2006.03.015" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.nmd.2006.03.015</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A modified Hammersmith functional motor scale for use in multi-center research on spinal muscular atrophy
Publisher
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Neuromuscular Disorders
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Male; Severity of Illness Index; Videotape Recording; Humans; Child Preschool; Reproducibility of Results; Infant; Disability Evaluation; Observer Variation; Contracture/di [Diagnosis]; Contracture/pp [Physiopathology]; Spinal Muscular Atrophies of Childhood/di [Diagnosis]; Spinal Muscular Atrophies of Childhood/pp [Physiopathology]; tone and motor problems; SMA1; tool development; scale development; HFMS
Creator
An entity primarily responsible for making the resource
Krosschell K J; Maczulski J A; Crawford T O; Scott C; Swoboda K J
Description
An account of the resource
The Hammersmith functional motor scale for children with spinal muscular atrophy was modified to establish a standard measure of functional ability in children with non-ambulant spinal muscular atrophy types 2 and 3 in a longitudinal multi-center clinical trial. This study assessed the intra- and interrater reliability and the test-retest stability of a modified version of the scale. Both intra- and interrater reliability were established. Results indicate that the scale is reliable and stable over a 6 month period. Reliability was maintained when patient sample criteria were expanded to include children younger than 30 months and children with popliteal angles greater than 20 degrees . These data establish the modified Hammersmith functional motor scale for children with spinal muscular atrophy as a reliable instrument for use in multi-center treatment trials in non-ambulant spinal muscular atrophy children. Our data provides additional support for the use of original scale items in terms of ease of administration, usefulness and reliability, while incorporating modifications to optimize its use in a multi-center clinical research setting.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.nmd.2006.03.015" target="_blank" rel="noreferrer noopener">10.1016/j.nmd.2006.03.015</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).
2006
Child Preschool
Contracture/di [Diagnosis]
Contracture/pp [Physiopathology]
Crawford T O
Disability Evaluation
HFMS
Humans
Infant
Krosschell K J
Maczulski J A
Male
Neuromuscular Disorders
Observer Variation
Reproducibility of Results
scale development
Scott C
Severity Of Illness Index
SMA1
Spinal Muscular Atrophies of Childhood/di [Diagnosis]
Spinal Muscular Atrophies of Childhood/pp [Physiopathology]
Swoboda K J
tone and motor problems
tool development
Videotape Recording
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1097/PEP.0b013e31828a205f" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/PEP.0b013e31828a205f</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
Reliability and Validity of the TIMPSI for Infants With Spinal Muscular Atrophy Type I
Publisher
An entity responsible for making the resource available
Pediatric Physical Therapy
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
infant; children; Pediatrics; Rehabilitation; motor; female; male; assessments; childhood/physiopathology; humans; spinal muscular atrophies of; child development; childhood/diagnosis; functional motor scale; observer variation; performance; physical therapy; physical therapy specialty/standards; reproducibility of results; skills/physiology; specialty/instrumentation; video recording; tone and motor problems; SMA1; tool development; scale development; TIMP
Creator
An entity primarily responsible for making the resource
Krosschell K J; Mazulski J A; Scott C; King W; Hartman J T; Case L E; Viazzo-Trussell D; Wood J; Roman C A; Hecker E; Meffert M; Leveille M; Kienitz K; Swoboda K J; Project Cure Spinal Muscular Atrophy Investigators
Description
An account of the resource
Purpose: This study examined the reliability and validity of the Test of Infant Motor Performance Screening Items (TIMPSI) in infants with type I spinal muscular atrophy (SMA). Methods: After training, 12 evaluators scored 4 videos of infants with type I SMA to assess interrater reliability. Intrarater and test-retest reliability was further assessed for 9 evaluators during a SMA type I clinical trial, with 9 evaluators testing a total of 38 infants twice. Relatedness of the TIMPSI score to ability to reach and ventilatory support was also examined. Results: Excellent interrater video score reliability was noted (intraclass correlation coefficient, 0.97-0.98). Intrarater reliability was excellent (intraclass correlation coefficient, 0.91-0.98) and test-retest reliability ranged from r = 0.82 to r = 0.95. The TIMPSI score was related to the ability to reach (P <= .05). Conclusion: The TIMPSI can reliably be used to assess motor function in infants with type I SMA. In addition, the TIMPSI scores are related to the ability to reach, an important functional skill in children with type I SMA. (Pediatr Phys Ther 2013;25:140-148)
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/PEP.0b013e31828a205f" target="_blank" rel="noreferrer noopener">10.1097/PEP.0b013e31828a205f</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).
2013
assessments
Case L E
Child Development
Childhood/diagnosis
childhood/physiopathology
Children
Female
functional motor scale
Hartman J T
Hecker E
Humans
Infant
Kienitz K
King W
Krosschell K J
Leveille M
Male
Mazulski J A
Meffert M
motor
Observer Variation
Pediatric Physical Therapy
Pediatrics
performance
Physical Therapy
physical therapy specialty/standards
Project Cure Spinal Muscular Atrophy Investigators
Rehabilitation
Reproducibility of Results
Roman C A
scale development
Scott C
skills/physiology
SMA1
specialty/instrumentation
spinal muscular atrophies of
Swoboda K J
TIMP
tone and motor problems
tool development
Viazzo-Trussell D
Video Recording
Wood J
-
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/10.1097/00005650-199709000-00004" target="_blank" rel="noreferrer">http://doi.org/10.1097/00005650-199709000-00004</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
Measurement of the validity of utility elicitations performed by computerized interview
Publisher
An entity responsible for making the resource available
Medical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Humans; Adult; Aged; Middle Aged; Choice Behavior; Patient Satisfaction; Reproducibility of Results; adolescent; Non-U.S. Gov't; P.H.S.; Research Support; U.S. Gov't; Nonparametric; Statistics; Akathisia; Drug-Induced/etiology; Antipsychotic Agents/adverse effects; Dyskinesia; Interviews/standards; Multimedia/standards; Parkinson Disease; Schizophrenia/drug therapy; Schizophrenic Psychology; Secondary/chemically induced
Creator
An entity primarily responsible for making the resource
Lenert LA; Morss S; Goldstein MK; Bergen MR; Faustman WO; Garber AM
Description
An account of the resource
OBJECTIVES: The authors evaluate a measure of the validity of utility elicitations and study the potential effects of invalid elicitations on population utility values. METHODS: The authors used a computerized survey to describe and measure preferences for three common side-effects of anti-psychotic drugs (tardive dyskinesia [TD], akathesia [AKA], pseudo-parkinsonism). The authors compared the validity of elicitations in 41 healthy volunteers to 22 schizophrenic patients. Preferences were measured using visual analog scale (VAS), pair-wise comparison (PWC), and the Standard Gamble (SG) methods. To assess the validity of each groups' responses, the authors compared the consistency of subjects' rank-order of the desirability of states across methods of preferences assessment (CAMPA). RESULTS: All healthy volunteers and 82% of patients completed the computer survey; of these subjects, 97% of healthy volunteers and 70% of patients indicated they thought they understood the task required of them. However, only 78% of healthy subjects and 44% of patients had a consistent rank ordering of preferences among VAS and PWC ratings; only 80% and 61%, respectively, had a consistent rank ordering preferences among SG and PWC ratings. For two of the three health states, inconsistent subjects had statistically higher SG utilities (for TD, 0.94 versus 0.87, and for AKA 0.92 versus 0.86; P < 0.05). CONCLUSIONS: The CAMPA test can identify potentially invalid preference ratings. Potentially invalid preference ratings may bias the "population" utilities for health states.
1997
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00005650-199709000-00004" target="_blank" rel="noreferrer">10.1097/00005650-199709000-00004</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
1997
Adolescent
Adult
Aged
Akathisia
Antipsychotic Agents/adverse effects
Backlog
Bergen MR
Choice Behavior
Drug-Induced/etiology
Dyskinesia
Faustman WO
Garber AM
Goldstein MK
Humans
Interviews/standards
Journal Article
Lenert LA
Medical Care
Middle Aged
Morss S
Multimedia/standards
Non-U.S. Gov't
Nonparametric
P.H.S.
Parkinson Disease
Patient Satisfaction
Reproducibility of Results
Research Support
Schizophrenia/drug therapy
Schizophrenic Psychology
Secondary/chemically induced
Statistics
U.S. Gov't
-
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/10.1080/13607863.2010.543658" target="_blank" rel="noreferrer">http://doi.org/10.1080/13607863.2010.543658</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The Spanish version of the dementia quality of life questionnaire: a validation study
Publisher
An entity responsible for making the resource available
Aging & Mental Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Female; Humans; Male; Aged; Middle Aged; Severity of Illness Index; European Continental Ancestry Group; Sensitivity and Specificity; Reproducibility of Results; Spain; Diagnostic and Statistical Manual of Mental Disorders; Language; 80 and over; Quality of Life/psychology; Questionnaires/standards; Dementia/diagnosis/physiopathology/psychology; Psychometrics/instrumentation; Translations
Creator
An entity primarily responsible for making the resource
Lucas-Carrasco R; Gomez-Benito J; Rejas J; Brod M
Description
An account of the resource
BACKGROUND: The aim of the study was to adapt and validate culturally the dementia-specific health-related quality of life instrument (HRQoL) into Spanish for patients with mild to moderate dementia. METHODS: Two forward translations, a reconciled version, and then a back translation were completed and subjected to expert review. A total of 112 patients with dementia, diagnosed according to DSM-IV criteria, from six centres providing care for persons with dementia in Spain participated in the study. The following patient-reported information was obtained by interview: demographics, subjective perception of health, depressive symptoms (Geriatric Depression Scale-15; GDS-15), functional ability (Barthel Index), and both generic (World Health Organization Quality of Life; WHOQOL-BREF) and dementia-specific quality of life (DQoL). RESULTS: The Spanish version of the DQoL showed acceptable psychometric properties. Internal consistency (Cronbach's alpha) was acceptable for most of the DQoL scales. As expected, associations were found between DQoL scales and the WHOQOL-BREF psychological domain and the GDS-15, indicating good validity. Neither functional status nor severity of dementia was associated with QoL; but depressive symptoms and self-reported feeling ill had a negative association on QoL. CONCLUSIONS: The results showed that the Spanish version of the DQoL has comparable psychometric properties to the US version. The DQoL appears to be a reliable and valid instrument intended to be administered to patients with mild/moderate dementia who are living at home.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/13607863.2010.543658" target="_blank" rel="noreferrer">10.1080/13607863.2010.543658</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
2011
80 And Over
Aged
Aging & Mental Health
Backlog
Brod M
Dementia/diagnosis/physiopathology/psychology
Diagnostic and Statistical Manual of Mental Disorders
European Continental Ancestry Group
Female
Gomez-Benito J
Humans
Journal Article
Language
Lucas-Carrasco R
Male
Middle Aged
Psychometrics/instrumentation
Quality Of Life/psychology
Questionnaires/standards
Rejas J
Reproducibility of Results
Sensitivity and Specificity
Severity Of Illness Index
Spain
Translations