1
40
4
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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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September 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
September 2020 List
URL Address
<a href="http://doi.org/10.1016/j.yebeh.2020.107268" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.yebeh.2020.107268</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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Expectations and knowledge of cannabidiol therapy for childhood epilepsy — A German caregiver survey
Publisher
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Epilepsy & Behavior
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Cannabidiol; Caregiver; Epilepsy; Information; Survey; Tolerance
Creator
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Klotz K A; Schönberger J; Nakamura L; San Antonio-Arce V; Bast T; Wiemer-Kruel A; Schubert-Bast S; Borggraefe I; Syrbe S; Jacobs J
Description
An account of the resource
Background Cannabidiol (CBD) has gained popularity among parents of children with epilepsy, even before evidence of efficacy and safety was available. The aim of our survey was to gain information about parental attitude to CBD, as well as expectations and knowledge of CBD for treatment of their child's epilepsy. Methods A survey using an open-access online questionnaire for parents or caregivers of children with epilepsy within German-speaking countries from March to June 2019 was used. Results Of 378 complete questionnaires (mean age of children: 11.1 (standard deviation [SD] 7.4) years), 28% (n = 106) reported previous or current CBD treatment over a mean time of 17.31 months (SD: 19.74), whereas 72% had no personal experience with CBD. Treatment was proposed by parents and not by physicians in 83% of cases and was mainly carried out with prescription-only products (71%, n = 67). Nevertheless, 29% used unregulated, artisanal products. Of all parents with previous experience, n = 77 (73%) reported that they expected CBD to be more efficient than the common antiseizure drugs (ASDs) at the beginning. Forty-five percent reported that their expectations were not met during therapy. Consistently, lack of seizure reduction was the most common reason to discontinue CBD (12/26). Of those responders without CBD experience, 93% would consider CBD for their child. However, the self-reported level of information was considered to be poor or very poor regarding efficacy (76%, n = 177), tolerance (83%, n = 191), interaction with other medication (91%, n = 211), and potential long-term effects (87%, n = 212). Conclusions There is a huge interest in CBD but includes potentially unrealistic expectations of its efficacy and tolerance combined with a low level of information. Neuropediatricians should address parents of children with epilepsy regarding potential motivation and expectations of CBD. In addition, parental education, especially on interactions and potential side effects, is strongly recommended.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.yebeh.2020.107268" target="_blank" rel="noreferrer noopener">10.1016/j.yebeh.2020.107268</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
Bast T
Borggraefe I
Cannabidiol
Caregiver
Epilepsy
Epilepsy & Behavior
Information
Jacobs J
Klotz K A
Nakamura L
San Antonio-Arce V
Schönberger J
Schubert-Bast S
September 2020 List
Survey
Syrbe S
Tolerance
Wiemer-Kruel 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
April 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
April 2018 List
URL Address
<a href="http://doi.org/10.1016/j.yebeh.2018.01.003" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.yebeh.2018.01.003</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 caring for a child with Dravet syndrome: Results of a caregiver survey
Publisher
An entity responsible for making the resource available
Epilepsy & Behavior
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Caregivers; Child; Child Care; Only Child; Dravet syndrome; child; Caregiver burden; EuroQoL 5D-5L; Oberst Caregiving Burden Scale; Supportive services; Epilepsies; Myoclonic
Creator
An entity primarily responsible for making the resource
Campbell JD; Whittington MD; Kim CH; VanderVeen GR; Knupp KG; Gammaitoni A
Description
An account of the resource
OBJECTIVE: The objective of this study was to describe and quantify the impact of caring for a child with Dravet syndrome (DS) on caregivers. METHODS: We surveyed DS caregivers at a single institution with a large population of patient with DS. Survey domains included time spent/difficulty performing caregiving tasks (Oberst Caregiving Burden Scale, OCBS); caregiver health-related quality of life (EuroQoL 5D-5L, EQ-5D); and work/activity impairment (Work Productivity and Activity Impairment questionnaire, WPAI). Modified National Health Interview Survey (NHIS) questions were included to assess logistical challenges associated with coordinating medical care. RESULTS: Thirty-four primary caregivers responded, and 30/34 respondents completed the survey. From OCBS, providing transportation, personal care, and additional household tasks required the greatest caregiver time commitment; arranging for child care, communication, and managing behavioral problems presented the greatest difficulty. EuroQoL 5D-5L domains with the greatest impact on caregivers (0=none, 5=unable/extreme) were anxiety/depression (70% of respondents>/=slight problems, 34%>/=moderate) and discomfort/pain (57% of respondents>/=slight problems, 23%>/=moderate). The mean EQ-5D general health visual analogue scale (VAS) score (0=death; 100=perfect health) was 67 (range, 11-94). Respondents who scored <65 were two- to fourfold more likely to report >/=moderate time spent and difficulty managing child behavior problems and assisting with walking, suggesting that children with DS with high degrees of motor or neurodevelopmental problems have an especially high impact on caregiver health. On the WPAI, 26% of caregivers missed >1day of work in the previous week, with 43% reporting substantial impact (>/=6, scale=1-10) on work productivity; 65% reported switching jobs, quitting jobs, or losing a job due to caregiving responsibilities. National Health Interview Survey responses indicated logistical burdens beyond the home; 50% of caregivers made >/=10 outpatient visits in the past year with their child with DS. CONCLUSIONS: Caring for patients with DS exerts physical, emotional, and time burdens on caregivers. Supportive services for DS families are identified to highlight an unmet need for DS treatments.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.yebeh.2018.01.003" target="_blank" rel="noreferrer noopener">10.1016/j.yebeh.2018.01.003</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).
2018
April 2018 List
Campbell JD
Caregiver Burden
Caregivers
Child
Child Care
Dravet Syndrome
Epilepsies
Epilepsy & Behavior
EuroQoL 5D-5L
Gammaitoni A
Kim CH
Knupp KG
Myoclonic
Oberst Caregiving Burden Scale
Only Child
Supportive services
VanderVeen GR
Whittington MD
-
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.yebeh.2013.11.012" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.yebeh.2013.11.012</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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Sudden unexpected death in children with epilepsy: Hearing from parents
Publisher
An entity responsible for making the resource available
Epilepsy & Behavior
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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Female; Humans; Male; Parents; Death; Epilepsy; Sudden
Creator
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Abdalla IG; Scorza CA; Fiorini AC; Cavalheiro EA; Scorza FA
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.yebeh.2013.11.012" target="_blank" rel="noreferrer">10.1016/j.yebeh.2013.11.012</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
2014-02
2014
Abdalla IG
Backlog
Cavalheiro EA
Death
Epilepsy
Epilepsy & Behavior
Female
Fiorini AC
Humans
Journal Article
Male
Parents
Scorza CA
Scorza FA
Sudden
-
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.yebeh.2005.07.004" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.yebeh.2005.07.004</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
I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life
Publisher
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Epilepsy & Behavior
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Creator
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Elliott IM; Lach L; Smith ML
Identifier
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<a href="http://doi.org/10.1016/j.yebeh.2005.07.004" target="_blank" rel="noreferrer">10.1016/j.yebeh.2005.07.004</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
2005
2005
Backlog
Elliott IM
Epilepsy & Behavior
Journal Article
Lach L
Smith ML