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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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>
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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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>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
Bmj Open
Child
Consciousness
developmental neurology & neurodisability
Dunford C
Ireland
July 2021 List
Magee W
Music Therapy
neurological injury
paediatric neurology
paediatric palliative care
Pool JW
rehabilitation medicine
Reproducibility of Results
Siegert RJ
State Medicine
Taylor S
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2021 List
URL Address
<a href="http://doi.org/10.1136/bmjopen-2021-048756" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjopen-2021-048756</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
CHILD-BRIGHT READYorNot Brain-Based Disabilities Trial: protocol of a randomised controlled trial (RCT) investigating the effectiveness of a patient-facing e-health intervention designed to enhance healthcare transition readiness in youth
Publisher
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BMJ Open
Date
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2021
Subject
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rehabilitation medicine; clinical trials; developmental neurology & neurodisability
Creator
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Gorter JW; Amaria K; Kovacs A; Rozenblum R; Thabane L; Galuppi B; Nguyen L; Strohm S; Mahlberg N; Via-Dufresne Ley A; Marelli A
Description
An account of the resource
Introduction Youth with brain-based disabilities (BBDs), as well as their parents/caregivers, often feel ill-prepared for the transfer from paediatric to adult healthcare services. To address this pressing issue, we developed the MyREADY TransitionTM BBD App, a patient-facing e-health intervention. The primary aim of this randomised controlled trial (RCT) was to determine whether the App will result in greater transition readiness compared with usual care for youth with BBD. Secondary aims included exploring the contextual experiences of youth using the App, as well as the interactive processes of youth, their parents/caregivers and healthcare providers around use of the intervention. Methods and analysis We aimed to randomise 264 youth with BBD between 15 and 17 years of age, to receive existing services/usual care (control group) or to receive usual care along with the App (intervention group). Our recruitment strategy includes remote and virtual options in response to the current requirements for physical distancing due to the COVID-19 pandemic. We will use an embedded experimental model design which involves embedding a qualitative study within a RCT. The Transition Readiness Assessment Questionnaire will be administered as the primary outcome measure. Analysis of covariance will be used to compare change in the two groups on the primary outcome measure; analysis will be intention-to-treat. Interviews will be conducted with subsets of youth in the intervention group, as well as parents/caregivers and healthcare providers. Ethics and dissemination The study has been approved by the research ethics board of each participating site in four different regions in Canada. We will leverage our patient and family partnerships to find novel dissemination strategies. Study findings will be shared with the academic and stakeholder community, including dissemination of teaching and training tools through patient associations, and patient and family advocacy groups. Trial registration number NCT03852550.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjopen-2021-048756" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-048756</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).
2021
Amaria K
Bmj Open
Clinical Trials
developmental neurology & neurodisability
Galuppi B
Gorter JW
July 2021 List
Kovacs A
Mahlberg N
Marelli A
Nguyen L
rehabilitation medicine
Rozenblum R
Strohm S
Thabane L
Via-Dufresne Ley A