1
40
71
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Title
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July 2023 List
Text
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July List 2023
URL Address
<a href="http://doi.org/10.20344/amp.18071" target="_blank" rel="noreferrer noopener"> http://doi.org/10.20344/amp.18071</a>
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[Validation of the European Portuguese Version of a Pediatric Palliative Needs Assessment Tool: The Pediatric Palliative Screening Scale]
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Acta Médica Portuguesa
Date
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2023
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Translations; Adolescent; Child; Chronic Disease; Humans; Needs Assessment; Portugal; Psychometrics; Reproducibility of Results; Surveys and Questionnaires; Young Adult
Creator
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Simoes MJP; Tavares F; Machado MdC
Description
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INTRODUCTION: The Pediatric Palliative Screening Scale (PaPaS Scale) was designed to help professionals to identify life-limiting or life-threatening children/young people with complex chronic conditions who would benefit from pediatric palliative care and facilitate their timely and appropriate referral. The aim of this study was to translate, culturally adapt and validate the PaPaS Scale for the Portuguese pediatric population., MATERIAL AND METHODS: A quantitative methodological study involving translation, cultural adaptation and validation of a scale was performed. In the first phase, the translation and cultural adaptation of the original version of the PaPaS Scale from English to European Portuguese was undertaken. The second phase consisted of evaluating the psychometric properties of the Portuguese version of the PaPaS Scale., RESULTS: Fifty-one enquires pertaining to children/young adults with complex chronic conditions were completed and returned, the sum of the responses to the items on the scale revealed that 84.4% of the patients had an indication for referral to pediatric palliative care. The internal consistency analysis obtained a value of Cronbach's alpha above 0.80, so the scale was considered adequate for the analyzed data. In our sample, the item-total correlation values indicated that the 11 variables measured the PaPaS Scale with good reliability and unidimensionally. The confirmatory factor analysis suggested that the items were significant, consistent, and presented convergent validity globally. Only item "2.2. Treatment side effects" obtained a value below the defined threshold., CONCLUSION: The PaPaS Scale was translated and adapted to the European Portuguese version, allowing its immediate use in the Portuguese population. It will be essential to design multicentric studies to expand the knowledge about the psychometric characteristics of this scale.
Identifier
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<a href="http://doi.org/10.20344/amp.18071" target="_blank" rel="noreferrer noopener">10.20344/amp.18071</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).
2023
Acta Médica Portuguesa
Adolescent
Child
Chronic Disease
Humans
July List 2023
Machado MdC
Needs Assessment
Portugal
Psychometrics
Reproducibility of Results
Simoes MJP
Surveys And Questionnaires
Tavares F
Translations
Young Adult
-
Dublin Core
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Title
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2022 Special Edition 3 - Oncology List
Text
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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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Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool
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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
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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>
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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
-
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Title
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November 2022 List
Text
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November 2022 List
URL Address
<a href="http://doi.org/10.1177/02692163221105599" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163221105599</a>
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Title
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Measuring Quality of Dying, Death and End-Of-Life Care for Children and Young People: A Scoping Review of Available Tools
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Hospice Care; Terminal Care; Adolescent; Child; Humans; Palliative Care; Quality of Life; Reproducibility of Results; Adolescent; Palliative Care; Quality of Death; Quality of Dying; Review; Terminal Care; Tools
Creator
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Mayland CR; Sunderland KA; Cooper M; Taylor P; Powell PA; Zeigler L; Cox V; Gilman C; Turner N; Flemming K; Fraser LK
Description
An account of the resource
BACKGROUND: The circumstances and care provided at the end of a child's life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to ensure high quality of care is provided. AIM: To identify available tools which measure the quality of dying, death and end-of-life care for children and young people; describe the content, and data on validity and reliability of existing tools. DESIGN: Scoping review was conducted following the Arksey and O'Malley methodological framework. DATA SOURCES: Four electronic databases (MEDLINE, EMBASE, CINAHL and PsycINFO) and grey literature were searched for studies published in English (January 2000-June 2021). A review of reference lists and citation searching was also undertaken. Tools needed to include a focus on the 'dying' phase of illness (defined as the last month of life). RESULTS: From 2078 articles, a total of 18 studies, reporting on 11 tools were identified. All tools were completed by primary caregivers or healthcare professionals as 'proxy' assessments; all except one was undertaken after death. Question items about quality of life and preparation for death were found in all tools; items relating to cultural aspects of care, grief and financial costs were less common. Only 6/11 had undergone psychometric testing within a paediatric palliative care setting. CONCLUSIONS: Future research should include ways to adapt, refine and improve existing tools. Assessing their wider application in different clinical and cultural settings and conducting further psychometric assessment represent areas of focus.
Identifier
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<a href="http://doi.org/10.1177/02692163221105599" target="_blank" rel="noreferrer noopener">10.1177/02692163221105599</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).
Adolescent
Child
Palliative Care
Quality of Life
Terminal Care
2022
Cooper M
Cox V
Flemming K
Fraser LK
Gilman C
Hospice Care
Humans
Mayland CR
November 2022 List
Palliative Medicine
Powell PA
Quality Of Death
quality of dying
Reproducibility of Results
Review
Sunderland KA
Taylor P
tools
Turner N
Zeigler L
-
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Title
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September 2022 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.
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September 2022 List
URL Address
<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163221093145</a>
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Title
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Quality of End-of-Life Care in Children With Neurological Conditions in Belgium: A Population-Level Evaluation Using Face-Validated Quality Indicators
Publisher
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Palliative Medicine
Date
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2022
Subject
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child; human; female; male; consultation; surgery; palliative; therapy; imaging; study; clinical; abstract; care; conference; intensive; major; unit; retrospective; system; follow; up; Belgium; nervous; terminal; general; magnetic; nuclear; observational; overtreatment; practitioner; ray; resonance; X
Creator
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Piette V; Smets T; Deliens L; Van Berlaer G; Beernaert K; Cohen J
Description
An account of the resource
Background/aims: Neurological conditions, such as cerebral palsy and muscular dystrophy, are the main diagnoses of referral for many pediatric palliative care teams. Nevertheless, parents of children with such conditions globally report insufficient end-of-life care. Population-level measurement of end-of-life care appropriateness provides a quality-ofcare overview that is currently lacking, and offers options for care improvement. Therefore, the aim of this study was to evaluate the quality of end-of-life care in children who died with neurological conditions using face-validated quality indicators.
Identifier
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<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</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).
2022
Beernaert K
Cohen J
Consensus
Deliens L
Palliative Medicine
Piette V
Quality Assurance
Reproducibility of Results
September 2022 List
Smets T
Terminal Care
Van Berlaer G
-
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Title
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July 2021 List
Text
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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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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
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2020
Subject
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Adolescent; Child; Reproducibility of Results; Ireland; Music Therapy; Consciousness; paediatric palliative care; rehabilitation medicine; developmental neurology & neurodisability; State Medicine; neurological injury; paediatric neurology
Creator
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Pool JW; Siegert RJ; Taylor S; Dunford C; Magee W
Description
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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
-
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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
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 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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Genome Sequencing as a Diagnostic Test in Children With Unexplained Medical Complexity
Publisher
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JAMA Network Open
Date
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2020
Subject
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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
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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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jamanetworkopen.2020.18109" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.18109</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).
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
A name given to the resource
August 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2020 List
URL Address
<a href="http://doi.org/10.1016/j.pedn.2020.05.006" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pedn.2020.05.006</a>
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Title
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Development of an instrument to measure stress in Korean nurses performing end-of-life care for children
Publisher
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Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Child; Physiological stress; reproducibility of results; Terminal care
Creator
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Park S Y; Ju H O
Description
An account of the resource
PURPOSE: This study aims to develop a scale to assess the stress of nurses caring for terminally ill children and to test the validity and reliability of the scale. BACKGROUND: Nurses caring for children experience various stressors that are different from those experienced by nurses caring for adult patients. It is important to understand the level of stress of nurses caring for dying children and their families. Instruments to measure these stress levels, however, are not available. DESIGN: This study used a methodological approach. METHOD: The initial items were identified through literature reviews and in-depth interviews. Content validation of the items was evaluated by seven experts. Participants were 357 pediatric nurses working at 11 institutions in six cities. Data were analyzed using item analysis, exploratory and confirmatory factor analysis, internal consistency, and test-retest. This study followed the STROBE checklist. FINDINGS: The final scale consisted of 22 items chosen and classified into 5 factors (psychological difficulties, conflict with parents, difficulties in communication, lack of end-of-life care knowledge, and restricted working environment), which explained 61.13% of the total variance. The 5-subscale model was validated by confirmatory factor analysis. Cronbach's alpha for the total item was 0.90, and the intra-class correlation coefficient was 0.89. CONCLUSION: This scale can be used to contribute toward the assessment of stress among nurses performing end-of-life care for children. PRACTICE IMPLICATIONS: This scale will contribute to the improvement of the quality of life of not only nurses, but also children and their families in pediatric settings.
Identifier
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<a href="http://doi.org/10.1016/j.pedn.2020.05.006" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2020.05.006</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
August 2020 List
Child
Journal of Pediatric Nursing
Ju H O
Park S Y
Physiological stress
Reproducibility of Results
Terminal Care
-
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/10.1002/ppul.21291" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ppul.21291</a>
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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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The feasibility and validity of forced spirometry in ataxia telangiectasia
Publisher
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Pediatric Pulmonology
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
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Adolescent; Ataxia Telangiectasia/di [Diagnosis]; Ataxia Telangiectasia/pp [Physiopathology]; Case-Control Studies; Child; Preschool; Feasibility Studies; Female; Humans; Male; Reproducibility of Results; Spirometry; Young Adult; breathing difficulties; Ataxia Telangiectasia; trajectory; characteristics; lung deterioration
Creator
An entity primarily responsible for making the resource
Vilozni D; Berkun Y; Levi Y; Weiss B; Jacobson J M; Efrati O
Description
An account of the resource
OBJECTIVES: To explore the feasibility and validity of forced spirometry in patients with ataxia telangiectasia (A-T). STUDY DESIGN: Twenty-eight patients (aged 3.7-19.3 years) performed spirometry on 47 occasions. Parameters studied were technical quality and relation to: predicted values, pulmonary illness. RESULTS: Start of test criteria for correct expiratory effort was significantly prolonged (183 +/- 115 ms; P < 0.001). The rise-time to peak flow in children free of respiratory symptoms (Group-FRS; n = 8) increased by 16.2 +/- 12.5 ms/year above recommended and in children having recurrent infections (n = 8) 30.4 +/- 16.1 ms/year, P < 0.01. Expiration-time was significantly shorter than requested (1.21 +/- 0.47 sec) and was ended abruptly in 57% of the patients. FEV(1) could not be established by 8/20 patients. The intra-subject reproducibility met criteria (4.4 +/- 2.7%, 5.2 +/- 2.8%, 2.9 +/- 3.2%, 6.3 +/- 5.3%, for FVC, FEV(0.5), PEF, FEF(25-75), respectively). Group-FRS showed yearly deterioration in FVC of 2.2%, while patients with hyper-reactive airways (Group-HRA; n =12) had a deterioration rate of 3.6%/year. FEV(0.5) deterioration rate was similar in both groups (2.2 and 2.0, respectively), but baseline values in Group-HRA were significantly lower than those of Group-FRS (P = 0.029) in similar young ages, indicating airway obstruction at early ages in Group-HRA. FEV(0.5) values deterioration also correlated with body mass index (P< 0.017). CONCLUSION: Forced spirometry in A-T patients is reproducible and has a distinct pattern, although curves do not meet other recommendations for acceptable criteria. The study insinuates that a rapid deterioration in lung function occurs in A-T patients with recurrent respiratory infection, suggesting that early intervention may prevent further deterioration or improve their lung function. Further studies are needed to confirm our results.Copyright © 2010 Wiley-Liss, Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ppul.21291" target="_blank" rel="noreferrer noopener">10.1002/ppul.21291</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).
2010
Adolescent
ataxia telangiectasia
ataxia telangiectasia/di [Diagnosis]
Ataxia Telangiectasia/pp [Physiopathology]
Berkun Y
breathing difficulties
Case-Control Studies
characteristics
Child
Efrati O
Feasibility Studies
Female
Humans
Jacobson J M
Levi Y
lung deterioration
Male
Pediatric Pulmonology
Preschool
Reproducibility of Results
Spirometry
Trajectory
Vilozni D
Weiss B
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
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/10.1093/ptj/69.12.1099" target="_blank" rel="noreferrer noopener">http://doi.org/10.1093/ptj/69.12.1099</a>
Dublin Core
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Title
A name given to the resource
Effect of hand splints on stereotypic hand behavior of girls with Rett syndrome: a replication study
Publisher
An entity responsible for making the resource available
Physical Therapy
Date
A point or period of time associated with an event in the lifecycle of the resource
1989
Subject
The topic of the resource
Humans; Female; Child Preschool; Reproducibility of Results; Splints; Stereotyped Behavior; Hand; Rett Syndrome/rehabilitation; tone and motor problems; Rett syndrome; physical intervention; hand splints; hand wringing
Creator
An entity primarily responsible for making the resource
Tuten H; Miedaner J
Description
An account of the resource
The purposes of this study were to replicate a recent report of the positive effects of hand splinting on the stereotypic hand movement of children with Rett syndrome and to evaluate the generality of these results to a different setting. Two 5-year-old girls diagnosed with early Stage-III Rett syndrome were introduced to hand splints in accordance with the multiple-baseline design used in the Naganuma and Billingsley study. Splint wear ranged from 30 to 50 days for the two subjects. Data were analyzed as a percentage of time and as actual time in minutes. Unlike the previous study, in which a decrease in hand-wringing behavior was noted, neither subject in our study demonstrated a decrease in stereotypic hand behavior or a subsequent increase in independent feeding skills when wearing the splints. There was also no evidence of increased hand wringing following withdrawal of the splints. The differences in ages of the subjects and different functional levels (stages) may have been contributing factors to the conflicting results and should be considered in managing this group of children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/ptj/69.12.1099" target="_blank" rel="noreferrer noopener">10.1093/ptj/69.12.1099</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).
1989
Child Preschool
Female
Hand
hand splints
hand wringing
Humans
Miedaner J
physical intervention
Physical Therapy
Reproducibility of Results
Rett syndrome
Rett Syndrome/rehabilitation
splints
Stereotyped Behavior
tone and motor problems
Tuten H
-
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/10.1212/WNL.0b013e318237f649" target="_blank" rel="noreferrer noopener">http://doi.org/10.1212/WNL.0b013e318237f649</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
Quantifying physical decline in juvenile neuronal ceroid lipofuscinosis (Batten disease)
Publisher
An entity responsible for making the resource available
Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
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
An entity primarily responsible for making the resource
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
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
-
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
An entity responsible for making the resource available
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/10.1002/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
-
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
-
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
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Title
A name given to the resource
Reliability and predictive validity of the Standardized Infant NeuroDevelopmental Assessment neurological scale
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
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
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<a href="http://doi.org/10.1111/dmcn.14045" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14045</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).
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
-
Dublin Core
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Title
A name given to the resource
2018 Oncology List
Text
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Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1007/s11136-017-1692-4" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1007/s11136-017-1692-4</a>
Dublin Core
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Title
A name given to the resource
Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review
Publisher
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Quality of Life Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Cross-Sectional Studies; Young Adult; Child; Humans; Adult; Adolescent; Reproducibility of Results; Biomedical Research; Quality of Life/psychology; Psychometrics; Adverse event self-report; Pediatric oncology; Self Report; Self-report instruments; Medical Oncology/standards
Creator
An entity primarily responsible for making the resource
Pinheiro LC; McFatrich M; Lucas N; Walker JS; Withycombe JS; Hinds PS; Sung L; Tomlinson D; Freyer DR; Mack JW; Baker JN; Reeve BB
Description
An account of the resource
OBJECTIVE: Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality self-report instruments to be used in pediatric oncology research studies. This study's objective was to conduct a systematic literature review of existing English language instruments used to measure self-reported symptoms in children and adolescents undergoing cancer treatment. METHODS: A comprehensive literature search was conducted in MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO to identify relevant articles published through November 10, 2016. Using pre-specified inclusion/exclusion criteria, six trained reviewers carefully screened abstracts and full-text articles for eligibility. RESULTS: There were 7738 non-duplicate articles identified in the literature search. Forty articles met our eligibility criteria, and within these articles, there were 38 self-report English symptom instruments. Most studies evaluated only cross-sectional psychometric properties, such as reliability or validity. Ten studies assessed an instrument's responsiveness or ability to detect changes in symptoms over time. Eight instruments met our criteria for use in future longitudinal pediatric oncology studies. CONCLUSIONS: This systematic review aids pediatric oncology researchers in identifying and selecting appropriate symptom measures with strong psychometric evidence for their studies. Enhancing the child's voice in pediatric oncology research studies allows us to better understand the impact of cancer and its treatment on the lives of children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.1007/s11136-017-1692-4" target="_blank" rel="noreferrer noopener">10.1007/s11136-017-1692-4</a>
2018
Adolescent
Adult
Adverse event self-report
Baker JN
Biomedical Research
Child
Cross-sectional Studies
Freyer DR
Hinds PS
Humans
Lucas N
Mack JW
McFatrich M
Medical Oncology/standards
Oncology 2018 List
Pediatric Oncology
Pinheiro LC
Psychometrics
Quality of Life Research
Quality Of Life/psychology
Reeve BB
Reproducibility of Results
Self Report
Self-report instruments
Sung L
Tomlinson D
Walker JS
Withycombe JS
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/10.1111/dmcn.12226" target="_blank" rel="noreferrer">http://doi.org/10.1111/dmcn.12226</a>
Dublin Core
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Title
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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
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Title
A name given to the resource
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
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Title
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Development and validation of the Communicating with Family about Brain Death Scale
Publisher
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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
An unambiguous reference to the resource within a given context
<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/10.1002/ajmg.a.33050" target="_blank" rel="noreferrer">http://doi.org/10.1002/ajmg.a.33050</a>
Dublin Core
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Title
A name given to the resource
Parental perceived value of a diagnosis for intellectual disability (ID): a qualitative comparison of families with and without a diagnosis for their child's ID
Publisher
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American Journal Of Medical Genetics.Part A
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Child; Female; Humans; Male; Family; Adult; Parents; Middle Aged; social support; Prenatal Diagnosis; Intellectual Disability; Reproducibility of Results; Perception; social support; Exploratory Behavior; Intellectual Disability/diagnosis/therapy; Parent caregivers
Creator
An entity primarily responsible for making the resource
Makela NL; Birch PH; Friedman JM; Marra CA
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ajmg.a.33050" target="_blank" rel="noreferrer">10.1002/ajmg.a.33050</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
Although new technologies such as array genomic hybridization to diagnosis the cause of intellectual disabilities (ID) are exciting to clinicians, the value of an etiological diagnosis to the families of affected children is largely unknown. Parents of 20 children with ID, 10 with and 10 without a causal or an etiological diagnosis were interviewed in depth about the value they place on such a diagnosis. They were asked about experiences acquiring services, use of support groups, interactions with family and friends, and opinions on prenatal diagnosis. Parents were also asked whether their child's diagnostic status had influenced these events or affected the couple's reproductive decisions. Finally, parents were asked whether their interest regarding the importance of an etiological diagnosis had changed over time. Interview transcripts were analyzed to determine values parents place on etiological diagnoses and comparisons were made between the two groups. These parents felt the need for a diagnosis most intensely when developmental concerns were first noted, and most parents agreed that this intensity diminished over time. All would have preferred to have an etiological diagnosis, but for some the only reason was curiosity. Validation was the most important value attributed to a diagnosis: it offered legitimacy for the child's behavior and appearance. However, a descriptive label, such as autism, was often more useful to parents than a rare but specific etiological diagnosis. Surprisingly, between the two groups there were no differences in the parents' perceptions or experiences related to the presence or absence of an etiological diagnosis for their child's ID.
2009
Adult
American Journal Of Medical Genetics.Part A
Backlog
Birch PH
Child
Exploratory Behavior
Family
Female
Friedman JM
Humans
Intellectual Disability
Intellectual Disability/diagnosis/therapy
Journal Article
Makela NL
Male
Marra CA
Middle Aged
Parent caregivers
Parents
Perception
Prenatal Diagnosis
Reproducibility of Results
Social 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/10.1007/s10545-007-0426-0" target="_blank" rel="noreferrer">http://doi.org/10.1007/s10545-007-0426-0</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
Mitochondrial disease: needs and problems of children, their parents and family. A systematic review and pilot study into the need for information of parents during the diagnostic phase.
Publisher
An entity responsible for making the resource available
Journal Of Inherited Metabolic Disease
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; Humans; Adult; Parent-Child Relations; Interviews as Topic; Questionnaires; Pilot Projects; Research Design; Longitudinal Studies; Patient Selection; Reproducibility of Results; Mitochondrial Diseases/diagnosis/psychology; Parents/education
Creator
An entity primarily responsible for making the resource
Noorda G; Hermans-Peters M; Smeitink JA; van Achterberg T; Kemps H; Goverde W; Schoonhoven L
Description
An account of the resource
OBJECTIVE: Firstly, this paper aims to systematically review the mitochondrial disease literature to identify studies assessing the needs and problems in the daily life of children with a mitochondrial disease and of their parents and family. The second aim is to provide more insight into the need for information by the parents of these children during the diagnostic process while in hospital. DESIGN: A systematic review and a pilot study, using a qualitative (focus group interviews; n = 7) and a quantitative (questionnaire; n = 37) design. RESULTS: Mothers reported great socioeconomic and psychoaffective strain and showed psychopathological symptoms in the two studies published with respect to this topic. The pilot study showed that parents considered an honest and interested attitude of the person who is giving the information as most important. Furthermore they wanted oral and written information and a central point where they could go with their questions at any time they felt the need. The need for information increased during the four phases of the diagnostic process and was highest in the fourth phase. CONCLUSIONS: The few studies found in the review, combined with expectations that having a mitochondrial disease must have a great impact on these children and their parents and family, call for more research in their needs and problems. Furthermore, there are gaps in the current information provision to parents of these children. A better understanding of the needs and problems of these children and their family is essential for effective care planning and might result in an improved quality of life.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s10545-007-0426-0" target="_blank" rel="noreferrer">10.1007/s10545-007-0426-0</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
Adult
Backlog
Child
Goverde W
Hermans-Peters M
Humans
Interviews As Topic
Journal Article
Journal Of Inherited Metabolic Disease
Kemps H
Longitudinal Studies
Mitochondrial Diseases/diagnosis/psychology
Noorda G
Parent-child Relations
Parents/education
Patient Selection
Pilot Projects
Questionnaires
Reproducibility of Results
Research Design
Schoonhoven L
Smeitink JA
van Achterberg 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/10.1007/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
-
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.jneumeth.2008.10.013" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jneumeth.2008.10.013</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
Beta-Endorphin Response to an Acute Pain Stimulus
Publisher
An entity responsible for making the resource available
Journal Of Neuroscience Methods
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Male; Pain Measurement; Time Factors; Reproducibility of Results; Animals; Mice; Acute Disease; Biomarkers of Pain; Physical Stimulation; Animal; beta-Endorphin/analysis/metabolism/secretion; Biological Markers/analysis/blood; Disease Models; Inbred DBA; Neurochemistry/methods; Pain/blood/physiopathology; Radioimmunoassay/methods; Up-Regulation/physiology
Creator
An entity primarily responsible for making the resource
Rasmussen NA; Farr LA
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jneumeth.2008.10.013" target="_blank" rel="noreferrer noopener">10.1016/j.jneumeth.2008.10.013</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
The timing of the measurement of biological samples (e.g. biomarkers) is not always standardized. Biomarkers are the focus of many recent studies and treatments. The purpose of this study was to determine the timing of the release of beta-endorphin (BE), a possible biomarker, after exposure to pain and/or handling stress in order to standardize measurements. Mouse plasma was collected for BE analysis following handling i.e. being picked up by the investigator, exposure to a painful (55 degrees C hot-plate), or exposure to a nonpainful stimulus (room temperature hot-plate). The groups exposed to either a painful or nonpainful stimulus released BE in response to the stimulus, but the duration of the response was longer in mice exposed to a painful stimulus than in mice exposed to a nonpainful stimulus. The BE in the mice exposed to a nonpainful stimulus peaked at 1 min and returned to baseline levels by 5 min while the BE response of the mice exposed to a painful stimulus peaked at 10 min and remained elevated for 25 min. The results of this study indicate that BE can be a biomarker for pain and handling stress, however, the timing of the measurement should differ.
2009
Acute Disease
Animal
Animals
Backlog
beta-Endorphin/analysis/metabolism/secretion
Biological Markers/analysis/blood
Biomarkers of Pain
Disease Models
Farr LA
Inbred DBA
Journal Article
Journal Of Neuroscience Methods
Male
Mice
Neurochemistry/methods
Pain Measurement
Pain/blood/physiopathology
Physical Stimulation
Radioimmunoassay/methods
Rasmussen NA
Reproducibility of Results
Time Factors
Up-Regulation/physiology
-
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.
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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/10.1097/BPO.0b013e3181558bc1" target="_blank" rel="noreferrer">http://doi.org/10.1097/BPO.0b013e3181558bc1</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
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>
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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
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
-
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
A name given to the resource
Conducting End-of-Life Studies in Pediatric Oncology
Publisher
An entity responsible for making the resource available
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/10.1002/pon.1026" target="_blank" rel="noreferrer">http://doi.org/10.1002/pon.1026</a>
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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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Psychometric properties of the Dutch version of the posttraumatic growth inventory among cancer patients
Publisher
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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/10.1016/j.nmd.2006.08.006" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.nmd.2006.08.006</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 scale to monitor progression and treatment of mitochondrial disease in children.
Publisher
An entity responsible for making the resource available
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
Child; Female; Humans; infant; Male; Great Britain; Prognosis; Disease Progression; Longitudinal Studies; Reproducibility of Results; Observer Variation; Predictive Value of Tests; Disability Evaluation; adolescent; Preschool; infant; Q3 Literature Search; Newborn; Pediatrics/methods; Mitochondrial Diseases/diagnosis/therapy; Mitochondrial Encephalomyopathies/diagnosis/therapy; Neurology/methods
Creator
An entity primarily responsible for making the resource
Phoenix C; Schaefer AM; Elson JL; Morava E; Bugiani M; Uziel G; Smeitink JA; Turnbull DM; McFarland R
Description
An account of the resource
Mitochondrial diseases affect all age groups, but those with childhood onset often seem to experience the greatest burden of disability. In some paediatric patients this can be explained by a cumulative disability acquired over many years. In others, additional factors, including the nature and severity of the molecular defect, must be considered. To date, no large-scale studies have attempted to document the natural history of paediatric mitochondrial disease. This is in part at least, because no assessment tool has been available to plot the temporal course of a disease with such a diverse clinical spectrum. This paper describes how a practical and semi-quantitative rating scale has been devised for children with mitochondrial disease, the Newcastle paediatric mitochondrial disease scale (NPMDS). The scale is multi-dimensional and reproducible, offering a tool through which mitochondrial disease progression can be objectively monitored. We anticipate that use of this tool will facilitate both longitudinal natural history studies and the assessment of future therapeutic interventions.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.nmd.2006.08.006" target="_blank" rel="noreferrer">10.1016/j.nmd.2006.08.006</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
Backlog
Bugiani M
Child
Disability Evaluation
Disease Progression
Elson JL
Female
Great Britain
Humans
Infant
Journal Article
Longitudinal Studies
Male
McFarland R
Mitochondrial Diseases/diagnosis/therapy
Mitochondrial Encephalomyopathies/diagnosis/therapy
Morava E
Neurology/methods
Neuromuscular Disorders
Newborn
Observer Variation
Pediatrics/methods
Phoenix C
Predictive Value of Tests
Preschool
Prognosis
Q3 Scoping Review Results
Reproducibility of Results
Schaefer AM
Smeitink JA
Turnbull DM
Uziel 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/10.1017/S0012162206001745" target="_blank" rel="noreferrer">http://doi.org/10.1017/S0012162206001745</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
Initial development and validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD).
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
2006
Subject
The topic of the resource
Child; Female; Humans; Male; Questionnaires; Health Status; Severity of Illness Index; Longitudinal Studies; Activities of Daily Living; Reproducibility of Results; quality of life; adolescent; Preschool; caregivers; Cerebral Palsy/classification/nursing/psychology; Disabled Persons/psychology/rehabilitation
Creator
An entity primarily responsible for making the resource
Narayanan UG; Fehlings D; Weir S; Knights S; Kiran S; Campbell K
Description
An account of the resource
This paper reports the development and validation of a disease-specific measure of health status and well-being of children with severe cerebral palsy (CP). The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) was constructed from recommendations from caregivers, healthcare providers, and review of other measures. Items spanning six domains are rated on an ordinal scale. Standardized scores (0-100) are reported for each domain and in total. Primary caregivers (n = 77) of 45 males and 32 females between 5 and 18 years of age (mean age 13 y 5 mo [SD 3 y 4 mo]) with CP, categorized by the Gross Motor Function Classification System (GMFCS) level, completed the CPCHILD. Caregivers of children with severe CP (GMFCS Levels IV and V) also completed a second administration of the CPCHILD 2 weeks after the first. The mean CPCHILD score for children with severe CP was 56.2 (SD 15.7; range 24-93). The mean CPCHILD scores for children in GMFCS Levels I to V were 22.0, 38.2, 23.0, 44.5, and 59.3 respectively (p < 0.001). Reliability was tested in 41/52 caregivers who reported no change in health status between the two administrations of the CPCHILD. The intraclass correlation coefficient was 0.94 (95% confidence interval 0.90-0.97). The CPCHILD seems to be a reliable and valid measure of caregivers' perspectives on the health status, functional limitations, and well-being of these children.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S0012162206001745" target="_blank" rel="noreferrer">10.1017/S0012162206001745</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
Activities of Daily Living
Adolescent
Backlog
Campbell K
Caregivers
Cerebral Palsy/classification/nursing/psychology
Child
Developmental Medicine and Child Neurology
Disabled Persons/psychology/rehabilitation
Fehlings D
Female
Health Status
Humans
Journal Article
Kiran S
Knights S
Longitudinal Studies
Male
Narayanan UG
Preschool
Quality Of Life
Questionnaires
Reproducibility of Results
Severity Of Illness Index
Weir S
-
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/10.1089/jpm.2005.8.s-30" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2005.8.s-30</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
Measuring end-of-life care outcomes prospectively
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; United States; Prospective Studies; Reproducibility of Results; quality of life; Health Services Research/methods; Data Collection/methods; Outcome and Process Assessment (Health Care)/methods; Palliative Care/psychology/standards; Psychometrics/instrumentation/methods; Terminal Care/psychology/standards
Creator
An entity primarily responsible for making the resource
Steinhauser KE
Description
An account of the resource
This paper discusses the state of the science in prospective measurement in end-of-life research and identifies particular areas for focused attention. Topics include defining the scope of inquiry, evaluating experiences of patients too ill to communicate, the role of proxy and family response, measurement sensitivity to change, the role of theory in guiding measurement efforts, evaluating relationships between domains of end-of-life experience, and measurement of cultural comprehensiveness. The state of the sciences calls for future research to (1) conduct longitudinal studies to capture transitions in end-of-life trajectories; (2) evaluate the quality of proxy reporting as it varies by rater relationship, domain, and over time; (3) use state-of-the art psychometric and longitudinal techniques to validate measures and to assess sensitivity to change; (4) develop further and test conceptual models of the experience of dying; (5) study the inter-relatedness of multiple dimensions of end-of-life trajectories; (6) compile updated information evaluating available measurement tools; and (7) conduct population- based research with attention to ethnic and age diversity.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2005.8.s-30" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.s-30</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
Data Collection/methods
Health Services Research/methods
Humans
Journal Article
Journal of Palliative Medicine
Outcome and Process Assessment (Health Care)/methods
Palliative Care/psychology/standards
Prospective Studies
Psychometrics/instrumentation/methods
Quality Of Life
Reproducibility of Results
Steinhauser KE
Terminal Care/psychology/standards
United States
-
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/10.1097/00002508-200503000-00005" target="_blank" rel="noreferrer">http://doi.org/10.1097/00002508-200503000-00005</a>
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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
Global and specific behavioral measures of pain in children with cerebral palsy.
Publisher
An entity responsible for making the resource available
The Clinical Journal Of Pain
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; Communication Barriers; Sensitivity and Specificity; Reproducibility of Results; adolescent; Cerebral Palsy/co [Complications]; Pain/et [Etiology]; Cerebral Palsy/di [Diagnosis]; Child Behavior/cl [Classification]; Pain Measurement/mt [Methods]; Pain/di [Diagnosis]; Cerebral Palsy/rh [Rehabilitation]; Physical Therapy Modalities/ae [Adverse Effects]
Creator
An entity primarily responsible for making the resource
von Baeyer CL
Description
An account of the resource
OBJECTIVES: The aim of this research was to validate global and behavioral observation methods for measuring pain in children with cerebral palsy (CP)., MATERIALS AND METHODS: Nineteen children diagnosed with CP (2-21 years of age) and their primary caregivers participated in this study. Children and their caregivers were videotaped in their home before, during, and after a stretching exercise, and tests of cognitive and social development were administered. Children who were able to pass a training task were also asked to rate their experience of pain using a numerical rating scale (self-report NRS), but only 5 children (24%) passed so their self-report scores were not included. Healthcare professionals rated videotaped segments for each of the 3 time periods in a randomized order using an observer NRS and the Non-Communicating Children's Pain Checklist-Postoperative Version (NCCPC-PV). Raters trained in the Child Facial Coding System (CFCS) examined the same videotaped segments., RESULTS: Results showed significantly greater pain behavior (observer NRS, NCCP- PV) during the stretching procedure than during the baseline and recovery segments. There were no significant differences in CFCS scores, across time segments., CONCLUSIONS: These findings support the hypothesis that children with CP express discernible pain behaviors regardless of cognitive or language ability. These results contribute to multidimensional assessment of pain in children with neurologic impairment.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00002508-200503000-00005" target="_blank" rel="noreferrer">10.1097/00002508-200503000-00005</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2005
Adolescent
Adult
Backlog
Cerebral Palsy/co [Complications]
Cerebral Palsy/di [Diagnosis]
Cerebral Palsy/rh [Rehabilitation]
Child
Child Behavior/cl [Classification]
Communication Barriers
Female
Humans
Journal Article
Male
Pain Measurement/mt [Methods]
Pain/di [diagnosis]
Pain/et [Etiology]
Physical Therapy Modalities/ae [Adverse Effects]
Reproducibility of Results
Sensitivity and Specificity
The Clinical Journal Of Pain
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/10.1111/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
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Consulting the oracle: ten lessons from using the Delphi technique in nursing research
Publisher
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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>
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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
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/10.1186/1471-2288-6-57" target="_blank" rel="noreferrer">http://doi.org/10.1186/1471-2288-6-57</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
Dealing with missing data in a multi-question depression scale: a comparison of imputation methods
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
2006
Subject
The topic of the resource
Female; Humans; Male; Attitude to Health; Questionnaires; Research Design; Hospitals; Reproducibility of Results; Regression Analysis; Alberta; Teaching; Statistical; Data Interpretation; Psychiatric Status Rating Scales; Self Assessment (Psychology); Surgical Procedures; Depression/classification/diagnosis; Operative/psychology; Outcome Assessment (Health Care)/methods/statistics & numerical data; Preoperative Care; Psychometrics/methods
Creator
An entity primarily responsible for making the resource
Shrive FM; Stuart H; Quan H; Ghali WA
Description
An account of the resource
BACKGROUND: Missing data present a challenge to many research projects. The problem is often pronounced in studies utilizing self-report scales, and literature addressing different strategies for dealing with missing data in such circumstances is scarce. The objective of this study was to compare six different imputation techniques for dealing with missing data in the Zung Self-reported Depression scale (SDS). METHODS: 1580 participants from a surgical outcomes study completed the SDS. The SDS is a 20 question scale that respondents complete by circling a value of 1 to 4 for each question. The sum of the responses is calculated and respondents are classified as exhibiting depressive symptoms when their total score is over 40. Missing values were simulated by randomly selecting questions whose values were then deleted (a missing completely at random simulation). Additionally, a missing at random and missing not at random simulation were completed. Six imputation methods were then considered; 1) multiple imputation, 2) single regression, 3) individual mean, 4) overall mean, 5) participant's preceding response, and 6) random selection of a value from 1 to 4. For each method, the imputed mean SDS score and standard deviation were compared to the population statistics. The Spearman correlation coefficient, percent misclassified and the Kappa statistic were also calculated. RESULTS: When 10% of values are missing, all the imputation methods except random selection produce Kappa statistics greater than 0.80 indicating 'near perfect' agreement. MI produces the most valid imputed values with a high Kappa statistic (0.89), although both single regression and individual mean imputation also produced favorable results. As the percent of missing information increased to 30%, or when unbalanced missing data were introduced, MI maintained a high Kappa statistic. The individual mean and single regression method produced Kappas in the 'substantial agreement' range (0.76 and 0.74 respectively). CONCLUSION: Multiple imputation is the most accurate method for dealing with missing data in most of the missind data scenarios we assessed for the SDS. Imputing the individual's mean is also an appropriate and simple method for dealing with missing data that may be more interpretable to the majority of medical readers. Researchers should consider conducting methodological assessments such as this one when confronted with missing data. The optimal method should balance validity, ease of interpretability for readers, and analysis expertise of the research team.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1471-2288-6-57" target="_blank" rel="noreferrer">10.1186/1471-2288-6-57</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
2006
Alberta
Attitude To Health
Backlog
Bmc Medical Research Methodology
Data Interpretation
Depression/classification/diagnosis
Female
Ghali WA
Hospitals
Humans
Journal Article
Male
Operative/psychology
Outcome Assessment (Health Care)/methods/statistics & numerical data
Preoperative Care
Psychiatric Status Rating Scales
Psychometrics/methods
Quan H
Questionnaires
Regression Analysis
Reproducibility of Results
Research Design
Self Assessment (Psychology)
Shrive FM
statistical
Stuart H
Surgical Procedures
Teaching
-
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/s00134-003-1853-5" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00134-003-1853-5</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
Conflict in the care of patients with prolonged stay in the ICU: types, sources, and predictors
Publisher
An entity responsible for making the resource available
Intensive Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Female; Humans; Male; Adult; Prospective Studies; Aged; Middle Aged; Family Relations; Professional-Family Relations; Boston; Communication Barriers; Length of Stay; Dissent and Disputes; Interprofessional Relations; Time Factors; Reproducibility of Results; Case-Control Studies; 80 and over; decision making; ICU Decision Making; Intensive Care Units/statistics & numerical data; Intensive Care/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Studdert DM; Mello MM; Burns JP; Puopolo AL; Galper BZ; Truog RD; Brennan T
Description
An account of the resource
OBJECTIVE: To determine types, sources, and predictors of conflicts among patients with prolonged stay in the ICU. DESIGN AND SETTING: We prospectively identified conflicts by interviewing treating physicians and nurses at two stages during the patients' stays. We then classified conflicts by type and source and used a case-control design to identify predictors of team-family conflicts. DESIGN AND SETTING: Seven medical and surgical ICUs at four teaching hospitals in Boston, USA. PATIENTS: All patients admitted to the participating ICUs over an 11-month period whose stay exceeded the 85th percentile length of stay for their respective unit ( n=656). MEASUREMENTS AND RESULTS: Clinicians identified 248 conflicts involving 209 patients; hence, nearly one-third of patients had conflict associated with their care: 142 conflicts (57%) were team-family disputes, 76 (31%) were intrateam disputes, and 30 (12%) occurred among family members. Disagreements over life-sustaining treatment led to 63 team-family conflicts (44%). Other leading sources were poor communication (44%), the unavailability of family decision makers (15%), and the surrogates' (perceived) inability to make decisions (16%). Nurses detected all types of conflict more frequently than physicians, especially intrateam conflicts. The presence of a spouse reduced the probability of team-family conflict generally (odds ratio 0.64) and team-family disputes over life-sustaining treatment specifically (odds ratio 0.49). CONCLUSIONS: Conflict is common in the care of patients with prolonged stays in the ICU. However, efforts to improve the quality of care for critically ill patients that focus on team-family disagreements over life-sustaining treatment miss significant discord in a variety of other areas.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00134-003-1853-5" target="_blank" rel="noreferrer">10.1007/s00134-003-1853-5</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
2003
80 And Over
Adult
Aged
Backlog
Boston
Brennan T
Burns JP
Case-Control Studies
Communication Barriers
Decision Making
Dissent And Disputes
Family Relations
Female
Galper BZ
Humans
ICU Decision Making
Intensive Care Medicine
Intensive Care Units/statistics & numerical data
Intensive Care/statistics & numerical data
Interprofessional Relations
Journal Article
Length Of Stay
Male
Mello MM
Middle Aged
Professional-family Relations
Prospective Studies
Puopolo AL
Reproducibility of Results
Studdert DM
Time Factors
Truog RD
-
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/s0882-5963(03)00090-3" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0882-5963(03)00090-3</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
Pain assessment in nonverbal children with severe cognitive impairments: the Individualized Numeric Rating Scale (INRS)
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Nursing
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; Humans; Male; Parent-Child Relations; Professional-Family Relations; Reproducibility of Results; Nonverbal Communication; Nursing Evaluation Research; Preschool; infant; Children W/SNI; disabled children; Cognition Disorders/complications/nursing; Pain Measurement/instrumentation/nursing/standards; Pain/etiology/nursing; Pediatric Nursing/instrumentation/methods
Creator
An entity primarily responsible for making the resource
Solodiuk J; Curley MA
Description
An account of the resource
Children's Hospital Boston began a major pain assessment and management initiative 3 years ago: Pain assessment and management are considered one of the institution's primary standards of care. The initiative included State of the Science meetings with internationally renowned nursing pain researchers and clinicians. These meetings generated nursing staff interest in specific applications of what is known about pain; how evidence-based knowledge can be used to ask population-specific clinical questions; and how an evidence-based approach can be applied to systematically develop, implement, and assess interventions that suit a population's clinical needs. This article is an example of an evidence-based pain assessment project at Children's Hospital Boston that focused on nonverbal children with cognitive impairments. After developing a clinical question, the authors did a literature review and a benchmarking analysis of best practice. The pilot of an adapted, existing pain assessment tool is described in this article.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0882-5963(03)00090-3" target="_blank" rel="noreferrer">10.1016/s0882-5963(03)00090-3</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
2003
Backlog
Child
Children W/SNI
Cognition Disorders/complications/nursing
Curley MA
Disabled Children
Humans
Infant
Journal Article
Journal of Pediatric Nursing
Male
Nonverbal Communication
Nursing Evaluation Research
Pain Measurement/instrumentation/nursing/standards
Pain/etiology/nursing
Parent-child Relations
Pediatric Nursing/instrumentation/methods
Preschool
Professional-family Relations
Reproducibility of Results
Solodiuk 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/10.1017/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/10.1017/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
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
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>
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
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/10.1097/00002508-200207000-00008" target="_blank" rel="noreferrer">http://doi.org/10.1097/00002508-200207000-00008</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
Peripheral blood mononuclear cell beta-endorphin concentration is decreased in chronic fatigue syndrome and fibromyalgia but not in depression: preliminary report
Publisher
An entity responsible for making the resource available
The Clinical Journal Of Pain
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Female; Humans; Male; Adult; Sensitivity and Specificity; Reproducibility of Results; Biomarkers of Pain; Diagnosis; Differential; Leukocytes; Mononuclear/immunology/metabolism; Fatigue Syndrome; beta-Endorphin/blood/immunology/metabolism; Chronic/blood/diagnosis/immunology; Depression/blood/diagnosis; Fibromyalgia/blood/diagnosis/immunology
Creator
An entity primarily responsible for making the resource
Panerai AE; Vecchiet J; Panzeri P; Meroni P; Scarone S; Pizzigallo E; Giamberardino MA; Sacerdote P
Description
An account of the resource
OBJECTIVE: The aim of this study was to examine the possible role of the immune system in the pathophysiology of chronic fatigue syndrome and fibromyalgia syndrome and in the differential diagnosis of depression by investigating changes in peripheral blood mononuclear cell levels of beta-endorphin, an endogenous opioid known to be involved in regulation of the immune system function. DESIGN: Beta-endorphin concentrations were measured by radioimmunoassay in peripheral blood mononuclear cells from healthy controls (n = 8) and patients with chronic fatigue syndrome (n = 17), fibromyalgia syndrome (n = 5), or depression (n = 10). RESULTS: Beta-endorphin concentrations were significantly lower in patients with chronic fatigue syndrome or fibromyalgia syndrome than in normal subjects and depressed patients (p <0.001 and p <0.01, respectively). They were significantly higher in depressed patients than in controls (p <0.01). CONCLUSIONS: Evaluation of peripheral blood mononuclear cell beta-endorphin concentrations could represent a diagnostic tool for chronic fatigue syndrome and fibromyalgia and help with differential diagnosis of these syndromes versus depression. The results obtained are also consistent with the hypothesis that the immune system is activated in both chronic fatigue syndrome and fibromyalgia syndrome.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00002508-200207000-00008" target="_blank" rel="noreferrer">10.1097/00002508-200207000-00008</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
2002
Adult
Backlog
beta-Endorphin/blood/immunology/metabolism
Biomarkers of Pain
Chronic/blood/diagnosis/immunology
Depression/blood/diagnosis
Diagnosis
Differential
Fatigue Syndrome
Female
Fibromyalgia/blood/diagnosis/immunology
Giamberardino MA
Humans
Journal Article
Leukocytes
Male
Meroni P
Mononuclear/immunology/metabolism
Panerai AE
Panzeri P
Pizzigallo E
Reproducibility of Results
Sacerdote P
Scarone S
Sensitivity and Specificity
The Clinical Journal Of Pain
Vecchiet J