1
40
24
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Title
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April 2024 List
Text
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April List 2024
URL Address
<a href="http://doi.org/10.3390/children11020234" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children11020234</a>
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The Use of Cannabinoids in Pediatric Palliative Care-A Retrospective Single-Center Analysis
Publisher
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Children
Date
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2024
Subject
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child; Palliative Care; diagnosis; article; female; human; male; retrospective study; Cannabinoids; spasticity; epilepsy; quality of life; outpatient; palliative therapy; pain; anxiety; clinical article; school child; human tissue; side effect; adolescent; therapy; drug dose increase; drug combination; drug therapy; nausea; adverse drug reaction; pediatric patient; loss of appetite; paresis; restlessness; special situation for pharmacovigilance; cannabinoid; add on therapy; decreased appetite
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Tagsold D; Toni I; Trollmann R; Woelfle J; Gravou-Apostolatou C
Description
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This data analysis aimed to systematically analyze a pediatric patient population with a life-limiting disease who were administered cannabinoids. It was a retrospective single-center analysis of patients under supervision of the specialized outpatient pediatric palliative care (SOPPC) team at the Department of Pediatrics and Adolescent Medicine of the Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU). Thirty-one patients with a primary diagnosis of neuropediatric, oncologic, metabolic, and cardiologic categories were included. The indications we identified were spasticity, pain, restlessness, anxiety, loss of appetite, epilepsy, and paresis. Certain aspects of quality of life were improved for 20 of 31 patients (64.5%). For nine patients (29%), no improvement was detected. No conclusions could be drawn for two patients (6.5%). Adverse events were reported for six of the thirty-one patients (19.4%). These were graded as mild, including symptoms such as restlessness, nausea, and behavioral issues. We detected no clinically relevant interactions with other medications. We collected fundamental data on the use of cannabinoids by pediatric palliative patients. Cannabinoids are now frequently administered in pediatric palliative care. They seem to be safe to use and should be considered an add-on therapy for other drug regimens.
Identifier
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<a href="http://doi.org/10.3390/children11020234" target="_blank" rel="noreferrer noopener">10.3390/children11020234</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).
2024
add on therapy
Adolescent
Adverse Drug Reaction
anxiety
April List 2024
Article
Cannabinoid
Cannabinoids
Child
Children
Clinical Article
decreased appetite
Diagnosis
drug combination
drug dose increase
Drug Therapy
Epilepsy
Female
Gravou-Apostolatou C
Human
Human Tissue
Loss Of Appetite
Male
Nausea
Outpatient
Pain
Palliative Care
Palliative Therapy
paresis
pediatric patient
Quality Of Life
restlessness
Retrospective Study
School Child
Side Effect
Spasticity
special situation for pharmacovigilance
Tagsold D
Therapy
Toni I
Trollmann R
Woelfle J
-
Dublin Core
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Title
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February 2024 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
February List 2024
URL Address
<a href="http://doi.org/10.4274/jpea.2023.198" target="_blank" rel="noreferrer noopener"> http://doi.org/10.4274/jpea.2023.198</a>
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Title
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The Relationship Between Dyspnea Severity with Radiological and Laboratory Findings in Pneumonia in Children in Pediatric Palliative Care
Publisher
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Journal of Pediatric Academy
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; female; human; major clinical study; male; cerebral palsy; epilepsy; palliative therapy; hospitalization; respiratory distress; medical device; assisted ventilation; genetic disorder; social worker; scoring system; cross-sectional study; caregiver; pediatrician; physiotherapist; nurse; X ray; bronchopneumonia; nutritional support; dyspnea; laboratory diagnosis; pneumonia/di [Diagnosis]; radiodiagnosis; atrophy; bacterial pneumonia; bone development; breathing muscle; interstitial pneumonia; modified Borg dyspnea scale; thorax radiography; virus pneumonia
Creator
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Harputluoglu N; Coskun M; Cubukcu D; Celik T
Description
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In care patients; pneumonia is common due to being bedridden, atrophy of respiratory muscles and use of medical devices. Dyspnea is the second most common symptom after pain in pediatric palliative care. In this study, it was aimed to examine the relationship between the severity of dyspnea and pneumonia. The study is a study that included patients admitted to pediatric palliative care, diagnosed with pneumonia, and applied Modified Borg Scale (MBS) between December 15, 2019 and December 15, 2020. The MBS has a scoring system ranging from 0 to 10 and assesses the severity of dyspnea. A total of 72 (34.4%) patients diagnosed with pneumonia and underwent MBS were included in the study. 51.4% (n=37) of the study group were male, and the median age was 6.00 years (ranges of quarters=9). It was observed that the severity of dyspnea did not affect determining the pneumonia type and possible pathogen (p=0.613, p=0.948, respectively) In line with the results of the study, it can be concluded that there is no relationship between the severity of dyspnea and pneumonia in patients in need of care.
Identifier
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<a href="http://doi.org/10.4274/jpea.2023.198" target="_blank" rel="noreferrer noopener">10.4274/jpea.2023.198</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
Article
assisted ventilation
Atrophy
bacterial pneumonia
bone development
breathing muscle
bronchopneumonia
Caregiver
Çelik T
Cerebral Palsy
Child
Coskun M
Cross-sectional Study
Cubukcu D
Dyspnea
Epilepsy
February List 2024
Female
Genetic Disorder
Harputluoglu N
Hospitalization
Human
interstitial pneumonia
Journal of Pediatric Academy
laboratory diagnosis
Major Clinical Study
Male
medical device
modified Borg dyspnea scale
Nurse
Nutritional Support
Palliative Therapy
Pediatrician
physiotherapist
pneumonia/di [Diagnosis]
radiodiagnosis
respiratory distress
scoring system
Social Worker
thorax radiography
virus pneumonia
X ray
-
Dublin Core
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Title
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March 2023 List
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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).
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 List 2023
URL Address
<a href="http://doi.org/10.1136/spcare-2022-HUNC.102" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2022-HUNC.102</a>
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Title
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Learning Disability Nurses in Palliative Care - A Narrative on Diversifying the Workforce and the Caseload
Publisher
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BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
learning disorder; narrative; nurse; Palliative Therapy; workforce; Adult; Adulthood; Attention; Autism; Child; cognitive defect; cohort analysis; conference abstract; distress syndrome; employment; epilepsy; Female; geriatric disorder; Hospice; Human; learning; Learning Disorders; malignant cardiac tumor; neurodisability; Palliative Care; skill; Terminal Care; treatment failure
Creator
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Marsden S
Description
An account of the resource
There have been multiple recent reports regarding the inequalities in palliative and end of life care for people with learning disabilities; but little if any attention paid to the role of learning disability nurses working in palliative care. Children's hospices often have a well-established cohort of learning disability nurses in their employment. This has not currently translated into adult palliative care; increasingly though, children with complex neuro-disabilities and life-limiting conditions are living into adulthood with good care, and need specialist symptom management and end of life care through transition into adult services. Adults with learning disabilities and other complex health conditions are also now living into later life and are more likely to develop age related illnesses such as cancers, heart failure etc., rather than dying from an acute episode related to epilepsy, for example. Learning disability nurses bring a specialist skill set in supporting people with a known LD diagnosis, but also those with acquired cognitive impairment, those in mental distress, people with communication difficulties and autistic people. A Learning Disability Nurse may recognise undiagnosed learning or support needs in patients, and be able to provide strategies to ameliorate those needs. The author would like to present a narrative on her experiences of moving into palliative care and how Learning Disability Nurses can provide a new perspective and skill set within the specialist palliative care team.
Identifier
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<a href="http://doi.org/10.1136/spcare-2022-HUNC.102" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.102</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
Adult
ADULTHOOD
Attention
Autism
BMJ Supportive and Palliative Care
Child
Cognitive Defect
Cohort Analysis
conference abstract
Distress Syndrome
Employment
Epilepsy
Female
geriatric disorder
Hospice
Human
Learning
learning disorder
Learning Disorders
malignant cardiac tumor
March List 2023
Marsden S
Narrative
Neurodisability
Nurse
Palliative Care
Palliative Therapy
Skill
Terminal Care
Treatment Failure
workforce
-
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Title
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July 2021 List
Text
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Citation List Month
July 2021 List
URL Address
<a href="http://doi.org/10.9778/cmajo.20200212" target="_blank" rel="noreferrer noopener">http://doi.org/10.9778/cmajo.20200212</a>
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Title
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Family attitudes about and experiences with medical cannabis in children with cancer or epilepsy: an exploratory qualitative study
Publisher
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CMAJ Open
Date
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2021
Subject
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Epilepsy; Family Attitudes; medical cannabis; oncology; pain management; parent experiences; pediatric palliative care
Creator
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Gibbard M; Mount D; Rassekh SR; Siden H
Description
An account of the resource
BACKGROUND: Cannabis is legal for recreational and medical use in Canada. Our aim was to explore family experiences using medical cannabis for children with severe conditions in the context of legalization. METHODS: We conducted a qualitative study using semistructured interviews between April and July 2019. Participants were parents of children attending BC Children's Hospital oncology or palliative care clinics, recruited through posters, emails or referral. Participants were included if they spoke English and their child used any type of cannabis for medical purposes. Interviews included open-ended questions about the child's cannabis use. Interviews were recorded and transcribed, and thematic analysis was performed using qualitative description. RESULTS: Ten interviews were completed with 9 mothers and 1 mother-father pair. The age range of the children was 22 months to 16 years. The primary reasons for cannabis use were epilepsy (6 children) or chemotherapy management (4 children). Five major themes were identified. 1) Child and family context, and cannabis as a last resort: children were seen as severely ill; parents sought cannabis out of desperation and responsibility to their child. 2) Varied information sources informed decision-making: parents lacked resources from health care providers and sought support from social media, industry and other families. 3) Cannabis as an ambiguous medicine: cannabis was viewed as both a serious drug that doctors should prescribe and as a natural alternative health product, safe to pursue alone. 4) Perceived effects: parents perceived medical benefits with few concerns about adverse effects. 5) Legal and financial challenges: parents were willing to obtain cannabis despite high costs and uncertain legality. INTERPRETATION: Parents of children with severe conditions pursued medical cannabis despite obstacles and needed unbiased information to access alone. Scientific investigation is needed to develop pediatric medical guidelines to inform decisions.
Identifier
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<a href="http://doi.org/10.9778/cmajo.20200212" target="_blank" rel="noreferrer noopener">10.9778/cmajo.20200212</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Cmaj Open
Epilepsy
Family Attitudes
Gibbard M
July 2021 List
medical cannabis
Medicinal Cannabis
Mount D
Oncology
Pain Management
Parent Experiences
Pediatric Palliative Care
Rassekh SR
Siden H
-
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Title
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December 2020 List
Text
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Citation List Month
December 2020 List
URL Address
<a href="http://doi.org/10.1016/j.pediatrneurol.2020.08.002" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pediatrneurol.2020.08.002</a>
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Title
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Characterization of Death in Infants With Neonatal Seizures
Publisher
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Pediatric Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
epilepsy; hospice; neonate; neurocritical care; neurology; palliative care; preterm
Creator
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Lemmon ME; Bonifacio SL; Shellhaas RA; Wusthoff CJ; Greenberg RG; Soul JS; Chang T; Chu CJ; Bates S; Massey SL; Abend NS; Cilio MR; Glass HC
Description
An account of the resource
Background: Neonatal seizures are associated with death and neurological morbidity; however, little is known about how neonates with seizures die. Method(s): This was a prospective, observational cohort study of neonates with seizures treated at seven sites of the Neonatal Seizure Registry. We characterized the mode of death, evaluated the association between infant characteristics and mode of death, and evaluated predictors of death or transfer to hospice. Result(s): We enrolled 611 consecutive neonates with seizures, and 90 neonates (15%) died before hospital discharge at a median age of 11 days (range: 1 to 163 days); 32 (36%) died in the first postnatal week. An additional 19 neonates (3%) were transferred to hospice. The most common mode of in-hospital death was death after extubation amidst concerns for poor neurological prognosis, in the absence of life-threatening physiologic instability (n = 43, 48%). Only one infant died while actively receiving cardiopulmonary resuscitation. In an adjusted analysis, premature birth (odds ratio: 3.06, 95% confidence interval 1.59 to 5.90) and high seizure burden (odds ratio: 4.33, 95% confidence interval 1.88 to 9.95) were associated with increased odds of death or transfer to hospice. Conclusion(s): In a cohort of neonates with seizures, death occurred predominantly after decisions to withdraw or withhold life-sustaining intervention(s). Future work should characterize how these decisions occur and develop optimized approaches to support families and clinicians caring for newborns with seizures. Copyright © 2020 Elsevier Inc.
Identifier
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<a href="http://doi.org/10.1016/j.pediatrneurol.2020.08.002" target="_blank" rel="noreferrer noopener">10.1016/j.pediatrneurol.2020.08.002</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
Abend NS
Bates S
Bonifacio SL
Chang T
Chu CJ
Cilio MR
December 2020 List
Epilepsy
Glass HC
Greenberg RG
Hospice
Lemmon ME
Massey SL
Neonate
Neurocritical care
Neurology
Palliative Care
Pediatric Neurology
preterm
Shellhaas RA
Soul JS
Wusthoff CJ
-
Dublin Core
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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>
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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>
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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
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
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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.c.31497" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ajmg.c.31497</a>
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Title
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Sleep disorders in Cornelia de Lange syndrome
Publisher
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American Journal of Medical Genetics Part C - Seminars in Medical Genetics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
adolescent; problem behavior; priority journal; gene mutation; intellectual impairment; human; article; child; female; male; controlled study; adult; clinical article; comorbidity; epilepsy; de Lange syndrome; sleep disorder; body mass; gastroesophageal reflux; gene; HDAC8 gene; histone deacetylase 8; NIPBL gene; RAD21 gene; SMC1A gene; SMC3 gene; sleep disturbance/disorders; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Zambrelli E;Fossati C;Turner K;Taiana M;Vignoli A;Gervasini C;Russo S;Furia F;Masciadri M;Ajmone P;Kullman G; Canevini M P; Selicorni A
Description
An account of the resource
Cornelia de Lange syndrome (CdLS) is a rare genetic disorder characterized by growth retardation, intellectual disability, limb defects, typical facial dysmorphism, and other systemic involvement. Sleep disturbances have been frequently reported in CdLS, but these have not been completely characterized, and prevalence data are conflicting. The aim of this paper is to characterize and determine the prevalence of sleep disorders in CdLS patients by means of a validated questionnaire. From November 2012 to November 2013, we asked 46 consecutive parents/caregivers of CdLS patients aged more than 3 years old to fill out the sleep disturbances scale for children (SDSC). The subjects were also characterized by the presence of epilepsy, intellectual disability (ID), behavioral problems, CdLS severity score, gastroesophageal reflux disease (GERD), and genetic test results. An abnormal total sleep score was found in 7 patients (15.2%), 26 (56.5%) showed a borderline total score, and 18 (39.1%) had an abnormal score for at least one SDSC factor. In our study sleep disorders were found to be positively associated to presence of epilepsy, GERD, ID, and behavioral disturbances. No correlation was evident with specific mutations of the different genes, BMI, and severity score. Our results confirm that sleep disorders represent a common problem in CdLS, with higher incidence than in the normal population. In these patients sleep disorders seem to be more prevalent in comorbid settings, representing a clinical indicator for different medical and neuropsychiatric disorders. Better knowledge and characterization of typology of sleep disorders in CdLS patients could permit a more specific therapeutic approach. © 2016 Wiley Periodicals, Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ajmg.c.31497" target="_blank" rel="noreferrer noopener">10.1002/ajmg.c.31497</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).
2016
Adolescent
Adult
Ajmone P
American Journal of Medical Genetics Part C - Seminars in Medical Genetics
Article
body mass
Canevini M P
characteristics
Child
Clinical Article
Comorbidity
Controlled Study
De Lange syndrome
Epilepsy
Female
Fossati C
Furia F
Gastroesophageal Reflux
gene
gene mutation
Gervasini C
HDAC8 gene
histone deacetylase 8
Human
Intellectual Impairment
Kullman G
Male
Masciadri M
NIPBL gene
Priority Journal
problem behavior
RAD21 gene
Russo S
Selicorni A
sleep disorder
sleep disturbance/disorders
SMC1A gene
SMC3 gene
Taiana M
Trajectory
Turner K
Vignoli A
Zambrelli E
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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
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/aur.1774" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/aur.1774</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
Variations of Stereotypies in Individuals With Rett Syndrome: A Nationwide Cross-Sectional Study in Taiwan
Publisher
An entity responsible for making the resource available
Autism Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Psychology; epilepsy; disorders; movement disorders; Rett syndrome; girls; autism; mecp2 mutations; MECP2; Behavioral Sciences; manifestations; CDKL5; chinese patients; ganglia; motor stereotypies; stereotypies; tone and motor problems; trajectory; characteristics; stereotypy; hair pulling; bruxism; retropulsion; lip protrusion
Creator
An entity primarily responsible for making the resource
Wong L C; Hung P L; Jan T Y; Lee W T
Description
An account of the resource
Individuals with Rett syndrome (RTT) can have variable manifestations of stereotypies. In this nation-wide cross-sectional study, we recruited all individuals with RTT in Taiwan diagnosed as RTT by neurologists based on genetic findings and diagnostic criteria. The data were collected using questionnaire. A total 43 cases of typical RTT and 15 cases of atypical RTT, aged from 2.1 to 40.1 years, were enrolled. They included 3 (5.2%) in stage II, 42 (72.4%) in stage III, and 13 (22.4%) in stage IV. All individuals presented with at least one stereotypy. Individuals with atypical RTT had more varied stereotypies (mean: 1466) compared to those with typical RTT (mean: 965) (P=0.003). Flapping (73.3%) and wringing (58.1%) were the most common hand stereotypies in atypical and typical RTT, respectively. Compared with typical RTT, hair pulling, bruxism, retropulsion, and protrusion of lips were more common in atypical RTT (P=0.003, P=0.006, P=0.003 and <0.001, respectively). The number of stereotypies did not differ among different stages, clinical severities, and hand functions. Although there were no age-related changes in stereotypies in atypical RTT, flapping (P=0.012), clapping (P=0.044), and mouthing with single hand (P=0.009) were significantly more prevalent in individuals aged <10 years with typical RTT, and they decreased after 10 years. In conclusion, our study showed that the stereotypical movements varied in typical and atypical RTT, implying the heterogeneous nature of the disease and the pathogenic mechanisms of RTT with atypical features. (C) 2017 International Society for Autism Research, Wiley Periodicals, Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/aur.1774" target="_blank" rel="noreferrer noopener">10.1002/aur.1774</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
Autism
Autism Research
Behavioral Sciences
bruxism
CDKL5
characteristics
chinese patients
Disorders
Epilepsy
Ganglia
girls
hair pulling
Hung P L
Jan T Y
Lee W T
lip protrusion
manifestations
mecp2
mecp2 mutations
motor stereotypies
Movement Disorders
Psychology
retropulsion
Rett syndrome
stereotypies
stereotypy
tone and motor problems
Trajectory
Wong L C
-
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.yebeh.2008.07.010" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.yebeh.2008.07.010</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
Self-injurious behavior and tuberous sclerosis complex: Frequency and possible associations in a population of 257 patients
Publisher
An entity responsible for making the resource available
Epilepsy and Behavior
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Epilepsy; Self-injurious behavior; Neurosciences & Neurology; epilepsy; Tuberous sclerosis complex; autism; Psychiatry; gene; aggression; identification; adults; Behavioral problems; Behavioral Sciences; disabilities; Frontal; frontal-lobe seizures; lobe; Tuber location; behavioral problems; tuberous sclerosis; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Staley B A; Montenegro M A; Major P; Muzykewicz D A; Halpern E F; Kopp C M C; Newberry P; Thiele E A
Description
An account of the resource
Self-injurious behavior (SIB) has been observed in people with tuberous sclerosis complex (TSC), although the frequency of SIB in TSC is largely unknown. SIB is associated with intellectual and developmental disabilities, but there is no single cause of SIB. We retrospectively examined the frequency of SIB in a population of 257 patients with TSC and determined possible associations with SIB. We found a 10% frequency of SIB in our TSC population. When compared with patients without psychiatric symptoms, we identified a significantly higher rate of electroencephalographic interictal spikes in the left frontal lobe and a significantly lower number of tubers in the left occipital, parietal, and posterior temporal lobes. We also found that frequency of TSC2 Mutation, history of infantile spasms, history of seizures, mental retardation, and autism are significantly associated with SIB. (C) 2008 Elsevier Inc. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.yebeh.2008.07.010" target="_blank" rel="noreferrer noopener">10.1016/j.yebeh.2008.07.010</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).
2008
adults
Aggression
Autism
behavioral problems
Behavioral Sciences
characteristics
Disabilities
Epilepsy
Epilepsy and Behavior
Frontal
frontal-lobe seizures
gene
Halpern E F
identification
Kopp C M C
lobe
Major P
Montenegro M A
Muzykewicz D A
Neurosciences & Neurology
Newberry P
Psychiatry
Self-Injurious behavior
Staley B A
Thiele E A
Trajectory
Tuber location
Tuberous Sclerosis
Tuberous sclerosis complex
-
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/10.1017/s0012162201002171" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/s0012162201002171</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
Melatonin treatment for sleep disorders in children with neurodevelopmental disorders: an observational study
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
2002
Subject
The topic of the resource
Male; Nervous System Diseases; Medical Records; Nervous System Diseases/complications; Sex Factors; Dose-Response Relationship Drug; Child; Humans; Adolescent; Female; Child Preschool; Infant; Developmental Disabilities; Epilepsy/complications; Epilepsy; Outpatients; Vision Disorders/complications; Developmental Disabilities/complications; Melatonin/therapeutic use; Sleep Disorders/complications/drug therapy; Q3 Literature Search; Melatonin; Sleep Wake Disorders; child; female; male; Vision Disorders; sleep disturbance/disorders; Lennox-Gastaut syndrome; leukodystrophy; MPSII; MPSIII; pharmacologic intervention; melatonin
Creator
An entity primarily responsible for making the resource
Ross C; Davies P; Whitehouse W
Description
An account of the resource
The study aim was to quantify melatonin-associated improvement in sleep by means of a parent-completed sleep diary during routine outpatient activity. An investigation into sleep disturbance was made at neurology outpatient appointments. Those parents who identified a problem were asked to complete a sleep diary, after which treatment was initiated. The first week of the diary was completed before treatment, the second when established on the maximum dose of melatonin required. Forty-nine patients (26 males, 23 females) aged from one to 13 years, were treated between 1997 and 1998: 28 of these returned interpretable diaries. In a further 18 patients, an assessment could be made of the usefulness of the treatment. Patients were fairly typical of those attending a tertiary centre, the most common primary diagnosis being epilepsy (n=26). Only seven patients were visually impaired. Of the 46 patients who were assessed, 34 showed an improvement. No adverse effects were attributed to the treatment.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/s0012162201002171" target="_blank" rel="noreferrer noopener">10.1017/s0012162201002171</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).
2002
Adolescent
Child
Child Preschool
Davies P
Developmental Disabilities
Developmental Disabilities/complications
Developmental Medicine and Child Neurology
Dose-Response Relationship Drug
Epilepsy
Epilepsy/complications
Female
Humans
Infant
Lennox-Gastaut syndrome
Leukodystrophy
Male
Medical Records
melatonin
Melatonin/therapeutic use
MPSII
MPSIII
Nervous System Diseases
Nervous System Diseases/complications
Outpatients
pharmacologic intervention
Q3 Scoping Review Results
Ross C
Sex Factors
Sleep Disorders/complications/drug therapy
sleep disturbance/disorders
Sleep Wake Disorders
Vision Disorders
Vision Disorders/complications
Whitehouse W
-
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/s0387-7604(01)00356-4" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/s0387-7604(01)00356-4</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Sleep dysfunction in Rett syndrome: lack of age related decrease in sleep duration
Publisher
An entity responsible for making the resource available
Brain and Development
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Age Factors; Child; Humans; Adolescent; Cohort Studies; Female; Child Preschool; Brain; Sleep; Epilepsy; Movement Disorders; Sleep Wake Disorders; Rett Syndrome; sleep disturbance/disorders; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Peat J; Leonard H; Christodoulou J; Ellaway C
Description
An account of the resource
The sleep patterns of a cohort of 83 Rett syndrome females were characterized using a sleep diary for 7 consecutive days and nights and compared with normative sleep data. The mean total sleep time of the cohort was 10.75 h, daytime sleep 0.77 h, sleep efficiency 89.7%, and sleep latency 0.52 h. When subjects were categorized according to age and Rett syndrome classification, there was no significant difference in their sleep characteristics. There was a significant difference in the percentage predicted total sleep time (P<0.001) and Z scores for total sleep time (P<0.001), when subjects were categorized according to age and compared with normal children. The Rett syndrome subjects in this study did not show the age related decrease in total and daytime sleep time seen in normal children. The immature sleep pattern demonstrated in this cohort, may be a consequence of arrested brain development.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0387-7604(01)00356-4" target="_blank" rel="noreferrer noopener">10.1016/s0387-7604(01)00356-4</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).
2001
Adolescent
Age Factors
Brain
Brain and Development
characteristics
Child
Child Preschool
Christodoulou J
Cohort Studies
Ellaway C
Epilepsy
Female
Humans
Leonard H
Movement Disorders
Peat J
Rett syndrome
Sleep
sleep disturbance/disorders
Sleep Wake Disorders
Trajectory
-
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.yebeh.2008.05.010" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.yebeh.2008.05.010</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
Behavior problems in children with tuberous sclerosis complex and parental stress
Publisher
An entity responsible for making the resource available
Epilepsy and Behavior
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
cancer; families; adolescents; Neurosciences & Neurology; seizure; attention; epilepsy; disorders; autism; Psychiatry; hyperactivity; autism spectrum disorder; diagnostic-criteria; population; tuberous sclerosis complex; Behavioral Sciences; mental; behavioral problems; frequency; infantile spasms; methylphenidate; mixed seizure disorder; parenting stress; retardation; tsc1; tuberous sclerosis; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Kopp C M C; Muzykewicz D A; Staley B A; Thiele E A; Pulsifer M B
Description
An account of the resource
Behavioral problems are common in children with tuberous sclerosis complex (TSC) and can be challenging to manage at home. Standardized measures were used to assess behavior in 99 pediatric patients with TSC and to evaluate parenting stress in their parents. About 40% of the pediatric patients presented clinically significant behavioral problems, most frequently involving symptoms of autism spectrum disorder, inattention, and hyperactivity. Higher seizure frequency, mixed seizure disorder, and low intellectual functioning placed the patient at significant risk for behavior problems. Almost 50% of participating parents reported experiencing clinically significant parenting stress, which was associated with specific characteristics of the child, including the presence of current seizures, a history of psychiatric diagnosis, low intelligence, and behavioral problems. Clinicians should be aware that behavioral problems are prominent in children with TSC. Referrals for behavioral intervention and monitoring of parental stress should be included in the medical management of children with TSC. (C) 2008 Elsevier Inc. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.yebeh.2008.05.010" target="_blank" rel="noreferrer noopener">10.1016/j.yebeh.2008.05.010</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).
2008
Adolescents
Attention
Autism
Autism spectrum disorder
behavioral problems
Behavioral Sciences
Cancer
characteristics
diagnostic-criteria
Disorders
Epilepsy
Epilepsy and Behavior
Families
frequency
hyperactivity
infantile spasms
Kopp C M C
Mental
methylphenidate
mixed seizure disorder
Muzykewicz D A
Neurosciences & Neurology
parenting stress
Population
Psychiatry
Pulsifer M B
retardation
Seizure
Staley B A
Thiele E A
Trajectory
tsc1
Tuberous Sclerosis
Tuberous sclerosis complex
-
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.870110615" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/mds.870110615</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 trial of piracetam in patients with myoclonus: nationwide multiinstitution study in Japan. The Myoclonus/Piracetam Study Group
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
1996
Subject
The topic of the resource
tone and motor problems; myoclonus; epilepsy; seizures; pharmacologic intervention; piracetam
Creator
An entity primarily responsible for making the resource
Ikeda A; Shibasaki H; Tashiro K; Mizuno Y; Kimura J
Description
An account of the resource
Sixty patients with disabling myoclonus excluding mainly spinal myoclonus were treated by piracetam as an open-labeled study, and myoclonus score, neurological symptoms, functional disability, and intensity of myoclonus were scored before and after treatment, including a blinded video inspection. Electrophysiological correlation also was investigated before and after treatment. Piracetam was effective in myoclonus, especially that of cortical origin, in both monotherapy and polytherapy. Piracetam also had positive benefits on gait ataxia and convulsions but not on dysarthria, and feeding and hand writing improved much more significantly. Psychologically significant improvement was seen in decreased motivation, sleep disturbance, attention deficit, and depression, all of which might be possibly secondary benefits associated with improvement of myoclonus. There was no positive correlation between clinical and electrophysiological improvement. Tolerance was good, and side effects were transient. However, hematological abnormalities observed in at least two patients in the present study should be kept in mind when relatively large doses of piracetam are administered, especially in combination with other antimyoclonic drugs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/mds.870110615" target="_blank" rel="noreferrer noopener">10.1002/mds.870110615</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).
1996
Epilepsy
Ikeda A
Kimura J
Mizuno Y
Movement Disorders
Myoclonus
pharmacologic intervention
piracetam
Seizures
Shibasaki H
Tashiro K
tone and motor problems
-
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.37027" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ajmg.a.37027</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 national survey of Rett syndrome: age, clinical characteristics, current abilities, and health
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
2015
Subject
The topic of the resource
breathing difficulties; constipation; feeding difficulties; tone and motor problems; Rett syndrome; trajectory; characteristics; epilepsy; weight; gastrointestinal problems; bowel problems
Creator
An entity primarily responsible for making the resource
Cianfaglione R; Clarke A; Kerr M; Hastings R P; Oliver C; Felce D
Description
An account of the resource
As part of a wider study to investigate the behavioral phenotype of a national sample of girls and women with Rett syndrome (RTT) in comparison to a well-chosen contrast group and its relationship to parental well-being, the development, clinical severity, current abilities and health of 91 participants were analyzed in relation to diagnostic, clinical and genetic mutation categories. Early truncating mutations or large deletions were associated with greater severity. Early regression was also associated with greater severity. All three were associated with lower current abilities. Epilepsy and weight, gastrointestinal and bowel problems were common co-morbidities. Participants with classic RTT had greater health problems than those with atypical RTT. A substantial minority of respondents reported fairly frequent signs of possible pain experienced by their relative with RTT. Overall, the study provides new data on the current abilities and general health of people with RTT and adds to the evidence that the severity of the condition and variation of subsequent disability, albeit generally within the profound range, may be related to gene mutation. The presence of certain co-morbidities represents a substantial ongoing need for better health. The experience of pain requires further investigation.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ajmg.a.37027" target="_blank" rel="noreferrer noopener">10.1002/ajmg.a.37027</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).
2015
American Journal of Medical Genetics Part A
bowel problems
breathing difficulties
characteristics
Cianfaglione R
Clarke A
Constipation
Epilepsy
feeding difficulties
Felce D
gastrointestinal problems
Hastings R P
Kerr M
Oliver C
Rett syndrome
tone and motor problems
Trajectory
weight
-
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/10.1016/0387-7604(94)00118-h" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/0387-7604(94)00118-h</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
Sleep disorders in tuberous sclerosis: a polysomnographic study
Publisher
An entity responsible for making the resource available
Brain and Development
Date
A point or period of time associated with an event in the lifecycle of the resource
1995
Subject
The topic of the resource
Circadian Rhythm; Male; Child; Humans; Adolescent; Female; Child Preschool; Epilepsy; Tuberous Sclerosis; Polysomnography; Sleep Wake Disorders; sleep disturbance/disorders; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Bruni O; Cortesi F; Giannotti F; Curatolo P
Description
An account of the resource
Overnight polysomnography was performed in 10 subjects with tuberous sclerosis (TS) and partial epilepsy in order to investigate the relationships between sleep organization, sleep disorders and epilepsy. Sleep architecture abnormalities were observed in 9 cases. Compared with ten healthy age-matched controls, the TS group showed a shorter total sleep time, a reduced sleep efficiency, a higher number of awakenings and stage transitions, an increased wake after sleep onset and stage 1 and a decreased REM sleep. Children with seizures showed a more disrupted sleep architecture compared with seizure-free children. Sleep disorders in TS were mainly due to sleep-related epileptic events and were more evident in children who showed large bifrontal or temporal tubers on MRI.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/0387-7604(94)00118-h" target="_blank" rel="noreferrer noopener">10.1016/0387-7604(94)00118-h</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).
1995
Adolescent
Brain and Development
Bruni O
characteristics
Child
Child Preschool
Circadian Rhythm
Cortesi F
Curatolo P
Epilepsy
Female
Giannotti F
Humans
Male
Polysomnography
sleep disturbance/disorders
Sleep Wake Disorders
Trajectory
Tuberous Sclerosis
-
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/10.1017/s0012162206000570" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/s0012162206000570</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
Standardized assessment of behavior and adaptive living skills in juvenile neuronal ceroid lipofuscinosis
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
symptoms; children; Pediatrics; validity; Neurosciences & Neurology; childhood; epilepsy; scale; batten-disease; impairments; NCL3; NCL6; trajectory; characteristics; behavioral problems; psychiatric problems
Creator
An entity primarily responsible for making the resource
Adams H; De Blieck E A; Mink J W; Marshall F J; Kwon J; Dure L; Rothberg P G; Ramirez-Montealegre D; Pearce D A
Description
An account of the resource
We obtained information about the behavioral, psychiatric, and functional status of 26 children (13 males, 13 females) with juvenile neuronal ceroid lipofuscinosis (JNCL; mean age 12y 3mo [SD 3y 4mo]; range 6y 9mo to 18y 8mo). Twenty-five children had visual impairment and 18 were known to have a positive seizure history before enrollment. Parents completed the Child Behavior Checklist, Scales of Independent Behavior Revised, and a structured interview to assess obsessive-compulsive symptoms. Participants exhibited a broad range of behavioral and psychiatric problems, rated as occurring frequently and/or as severe in more than half of the sample. Males and females did not differ with regard to the number of behavioral and psychiatric problems. Children were also limited in their ability to perform activities of daily living, including self-care, hygiene, socialization, and other age-appropriate tasks. Results provide a quantitative baseline for behavioral and psychiatric problems and functional level in JNCL, against which further decline can be measured. Longitudinal assessment of behavioral and psychiatric symptoms and functional abilities is continuing and will provide much-needed data on the natural history of JNCL.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/s0012162206000570" target="_blank" rel="noreferrer noopener">10.1017/s0012162206000570</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
Adams H
batten-disease
behavioral problems
characteristics
childhood
Children
De Blieck E A
Developmental Medicine and Child Neurology
Dure L
Epilepsy
impairments
Kwon J
Marshall F J
Mink J W
NCL3
NCL6
Neurosciences & Neurology
Pearce D A
Pediatrics
psychiatric problems
Ramirez-Montealegre D
Rothberg P G
Scale
Symptoms
Trajectory
Validity
-
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 2018 List
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).
Text
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Citation List Month
August 2018 List
URL Address
<a href="http://doi.org/10.1111/dmcn.13790" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.13790</a>
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Title
A name given to the resource
Changing landscape of paediatric palliative care
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
2018
Subject
The topic of the resource
human; child; female; male; palliative therapy; diagnosis; hospice; adult; major clinical study; retrospective study; conference abstract; young adult; epilepsy; mortality; morbidity; landscape; catering service; life event; medical care; muscle spasm
Creator
An entity primarily responsible for making the resource
Nallapeta N; Hills M
Description
An account of the resource
Introduction: Advancement in medical science and better health care has led to increased survival of children with complex neurodisability (cerebral palsy, neuromuscular, neuro-metabolic, and genetic disorders). Paediatric palliative care has traditionally been associated with looking after children with oncological conditions. This study looked into the role of hospices in children and young adults with complex neurodisability. Patients and method: A retrospective review of electronic case records looking at all admission (3 months period) to Martin House Children's Hospice (provides family-led care for families from across West, North, and East Yorkshire) was performed. Results: There were 192 admissions of children and young adults of which 180 (93.75%) admissions (152 children with 28 repeat admission) had complex neurodisability conditions. Thirty-five percent had some medical input during their stay. Of these, 3.3% were admitted to hospice for symptom control reason alone. Reason for medical review was varied and included specialist advice like spasm/epilepsy control. Fewer than 2% of children were end of life admissions. Although the neurodisability diagnosis varied, symptomatology and end of life events were common. Conclusion: Children with complex neurodisability with life limiting and life-threatening conditions have varied clinical needs. The role of hospice and palliative care is now shifting towards catering for morbidity rather than mortality in children. Hospice has a significant role in initiating and continuing specialist medical care and not just palliative medicine. Collaborative working pattern of neurodisability specialist and palliative care teams is essential to provide best care for these groups of children.
Identifier
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<a href="http://doi.org/10.1111/dmcn.13790" target="_blank" rel="noreferrer noopener">10.1111/dmcn.13790</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).
2018
Adult
August 2018 List
catering service
Child
conference abstract
Developmental Medicine and Child Neurology
Diagnosis
Epilepsy
Female
Hills M
Hospice
Human
landscape
life event
Major Clinical Study
Male
Medical Care
Morbidity
Mortality
muscle spasm
Nallapeta N
Palliative Therapy
Retrospective Study
Young Adult
-
Text
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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
A name given to the resource
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
The topic of the resource
Female; Humans; Male; Parents; Death; Epilepsy; Sudden
Creator
An entity primarily responsible for making the resource
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>
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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
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/10.1002/ana.23910" target="_blank" rel="noreferrer">http://doi.org/10.1002/ana.23910</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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Life at the interface: adults with "pediatric" disorders of the nervous system
Publisher
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Annals Of Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Humans; Neoplasms; Adult; Cerebral Palsy; Epilepsy; Cystic Fibrosis; Heart Defects; Child Development Disorders; Congenital; Pervasive
Creator
An entity primarily responsible for making the resource
Schor NF
Description
An account of the resource
The increasing longevity of patients with congenital and developmental disorders of the nervous system reflects the palliative and social success of pediatrics in the past 2 decades. This success has resulted in an increasing number of adult patients with residua or sequelae of childhood disease and/or its treatment. It is critically important that residencies and subspecialty fellowships train a cadre of physicians to prepare patients and families for the transition of children with special health care needs to adulthood and to attend to their unique medical, psychological, and social concerns. Health services and education research must better define the needs of this growing population and the best ways to educate their physicians and families and empower them to become as independent as their fullest potential allows.
2013-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ana.23910" target="_blank" rel="noreferrer">10.1002/ana.23910</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
2013
Adult
Annals Of Neurology
Backlog
Cerebral Palsy
Child
Child Development Disorders
Congenital
Cystic Fibrosis
Epilepsy
Heart Defects
Humans
Journal Article
Neoplasms
Pervasive
Schor NF
-
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/s11136-004-2575-z" target="_blank" rel="noreferrer">http://doi.org/10.1007/s11136-004-2575-z</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 and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: a European perspective
Publisher
An entity responsible for making the resource available
Quality of Life Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Epilepsy; PedPal Lit; emotion; 'Independence'; 'Physical'; 'Social Exclusion') with acceptable internal consistency.; 'Social Inclusion'; 13-16 years) with different chronic health conditions (asthma; Adolescent Child Chronic Disease/psychology Disabled Children/psychology Europe Health Status Humans Pilot Projects Quality of Life/psychologyQuestionnaires Research Support; and cystic fibrosis) as well as their families were included. Data were analysed according to predefined psychometric and content criteria. Psychometric an alyses resulted in a 56-item chronic generic HRQOL questionnaire with six domains ('Medication'; and implement European instruments for the assessment of HRQOL of children and adolescents with disabilities and their families. The current paper describes the development and pilot testing of a chronic generic HRQOL measure. Using literature searches; Arthritis; atopic dermatitis; Cerebral Palsy; Diabetes; expert consulting and focus groups with children/adolescents and their families; items of the instruments were developed and translated into the respective languages. A pilot test with 360 children and adolescents was conducted. Children and adolescents (8-12; Non-U.S. Gov'tSickness Impact Profile%X Health-related quality of life (HRQOL) assessment in children and adolescents with chronic health conditions is increasingly considered as a relevant topic. The aim of the EU-funded DISABKIDS project is to develop; test
Creator
An entity primarily responsible for making the resource
Petersen C; Schmidt S; Power M; Bullinger M
Identifier
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<a href="http://doi.org/10.1007/s11136-004-2575-z" target="_blank" rel="noreferrer">10.1007/s11136-004-2575-z</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
'Independence'
'Physical'
'Social Exclusion') with acceptable internal consistency.
'Social Inclusion'
13-16 years) with different chronic health conditions (asthma
2005
Adolescent Child Chronic Disease/psychology Disabled Children/psychology Europe Health Status Humans Pilot Projects Quality of Life/psychologyQuestionnaires Research Support
and cystic fibrosis) as well as their families were included. Data were analysed according to predefined psychometric and content criteria. Psychometric an alyses resulted in a 56-item chronic generic HRQOL questionnaire with six domains ('Medication'
and implement European instruments for the assessment of HRQOL of children and adolescents with disabilities and their families. The current paper describes the development and pilot testing of a chronic generic HRQOL measure. Using literature searches
Arthritis
atopic dermatitis
Backlog
Bullinger M
Cerebral Palsy
Diabetes
Emotion
Epilepsy
expert consulting and focus groups with children/adolescents and their families
items of the instruments were developed and translated into the respective languages. A pilot test with 360 children and adolescents was conducted. Children and adolescents (8-12
Journal Article
Non-U.S. Gov'tSickness Impact Profile%X Health-related quality of life (HRQOL) assessment in children and adolescents with chronic health conditions is increasingly considered as a relevant topic. The aim of the EU-funded DISABKIDS project is to develop
PedPal Lit
Petersen C
Power M
Quality of Life Research
Schmidt S
test
-
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://adc.bmjjournals.com" target="_blank" rel="noreferrer">http://adc.bmjjournals.com</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
Sublingual lorazepam at home for acute treatment of seizures
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Home Nursing; Epilepsy; Seizures; Administration; Oral; home care services; Sublingual; Benzodiazepinones; Chlorobenzenes; Convulsions; Lorazepam
Creator
An entity primarily responsible for making the resource
Wassmer E; Allen A; Bjelajac A; Weiss S
Description
An account of the resource
eizures are often initially treated at home. The standard treatment is rectal diazepam. Sublingual (SL) lorazepam is easy to administer but has not been well evaluated for efficacy in epilepsy. It has been reported to be effective for serial seizures in 10 children.1 Aim: To study the efficacy of SL lorazepam for seizures in children at home. Method: After informed consent 18 children were enrolled in the study. The parents were instructed to use SL Lorazepam for seizures lasting at least 5 minutes. After each administration, the parents completed a standardised questionnaire. The outcomes were time from lorazepam administration to seizure cessation and the occurrence of any adverse events. Results: 18 children received SL lorazepam to treat 49 seizures. 26 were prolonged and 23 serial seizures. Lorazepam was given after a median of 5 minutes (range 1–60). 39 seizures stopped after a median of 6 minutes (range 1–75). Seizures recurred in 17 children after a median of 8 hours (range 1–16). 34 of 49 administrations were followed by sleep and 4 by rapid breathing or snoring. No apneas were reported. 16 children visited the emergency department of which 13 were admitted. All parents thought lorazepam was easy to administer. Conclusion: SL lorazepam is effective in the treatment of prolonged and serial seizures at home. Larger prospective studies are needed. SL lorazepam may be a promising alternative treatment to rectal diazepam.
2003
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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
2003
Administration
Allen A
Archives of Disease in Childhood
Backlog
Benzodiazepinones
Bjelajac A
Chlorobenzenes
Convulsions
Epilepsy
home care services
Home Nursing
Journal Article
Lorazepam
Oral
Seizures
Sublingual
Wassmer E
Weiss 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/10.1111/j.1528-1157.1996.tb00533.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1528-1157.1996.tb00533.x</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Influence of epilepsy on mortality in mental retardation: an epidemiologic study
Publisher
An entity responsible for making the resource available
Epilepsia
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Cohort Studies; Adult; Prevalence; Follow-Up Studies; Comorbidity; Epilepsy; Severity of Illness Index; Confidence Intervals; cause of death; Human; mortality; Middle Age; Epilepsy/mo [Mortality]; Mental Retardation/mo [Mortality]; Cerebral Palsy/ep [Epidemiology]; Cerebral Palsy/mo [Mortality]; Epilepsy/di [Diagnosis]; Epilepsy/ep [Epidemiology]; Generalized/di [Diagnosis]; Generalized/ep [Epidemiology]; Generalized/mo [Mortality]; Mental Retardation/di [Diagnosis]; Mental Retardation/ep [Epidemiology]; Pneumonia/ep [Epidemiology]; Pneumonia/mo [Mortality]; Sweden/ep [Epidemiology]
Creator
An entity primarily responsible for making the resource
Forsgren L; Edvinsson SO; Nystrom L; Blomquist HK
Description
An account of the resource
PURPOSE: A cohort consisting of all persons with known mental retardation (MR) and living in a Swedish province on December 31, 1985, was followed for 7 years (1987-1992) to study the mortality pattern. METHODS: A file of the cohort was linked to the cause-of-death pattern of the general population in the study area. RESULTS: One hundred twenty-four deaths (8.4%) occurred among the 1,478 persons with MR. Thirty deaths (10.1%) occurred among the 296 persons with epilepsy and MR. The standardized mortality ratio (SMR) in those with only MR was significantly increased as compared with that of the general population: 1.6 [95% confidence interval (CI) 1.3-2.0]; MR and epilepsy, 5.0 (CI 3.3-7.5); and MR, epilepsy, and cerebral palsy (CP), 5.8 (CI 3.4-9.7). Mortality was increased both in patients with partial seizures without seizures secondarily generalized (SMR 3.7, CI 1.0-13.6) and in patients with seizures secondarily generalized (5.0, CI 2.3-11.0). The highest mortality occurred in patients who had seizures that were always generalized from the onset: 8.1 (CI 5.7-11.5). Mortality increased with increasing seizure frequency during the year preceding the prevalence date. In patients with epilepsy and MR, pneumonia was the most common cause of death and a seizure was the probable cause of death in 6.7%. CONCLUSIONS: Epilepsy is associated with a significantly increased mortality in persons with MR. The increase is related to seizure type and seizure frequency. Death in persons with epilepsy and MR is seldom directly due to seizures. Other impairments associated with epilepsy and MR are important causes of death.
1996
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1528-1157.1996.tb00533.x" target="_blank" rel="noreferrer">10.1111/j.1528-1157.1996.tb00533.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
1996
Adult
Backlog
Blomquist HK
Cause Of Death
Cerebral Palsy/ep [Epidemiology]
Cerebral Palsy/mo [Mortality]
Cohort Studies
Comorbidity
Confidence Intervals
Edvinsson SO
Epilepsia
Epilepsy
Epilepsy/di [diagnosis]
Epilepsy/ep [Epidemiology]
Epilepsy/mo [Mortality]
Follow-up Studies
Forsgren L
Generalized/di [Diagnosis]
Generalized/ep [Epidemiology]
Generalized/mo [Mortality]
Human
Journal Article
Mental Retardation/di [Diagnosis]
Mental Retardation/ep [Epidemiology]
Mental Retardation/mo [Mortality]
Middle Age
Mortality
Nystrom L
Pneumonia/ep [Epidemiology]
Pneumonia/mo [Mortality]
Prevalence
Severity Of Illness Index
Sweden/ep [Epidemiology]
-
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.ejpn.2012.05.010" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ejpn.2012.05.010</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
Cognitive effects of interictal epileptiform discharges in children
Publisher
An entity responsible for making the resource available
European Journal Of Paediatric Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Child; Epilepsy; Cognition; EEG; Epileptiform; Spike
Creator
An entity primarily responsible for making the resource
Ebusemail S; Arends J; Hendriksen J; van der Horst E; de la Parra N; Hendriksen R; Santegoeds E; Boon P; Aldenkamp B
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejpn.2012.05.010" target="_blank" rel="noreferrer">10.1016/j.ejpn.2012.05.010</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).
Type
The nature or genre of the resource
Journal Article
2012
Aldenkamp B
Arends J
Backlog
Boon P
Child
Cognition
de la Parra N
Ebusemail S
EEG
Epilepsy
Epileptiform
European Journal of Paediatric Neurology
Hendriksen J
Hendriksen R
Journal Article
Santegoeds E
Spike
van der Horst E
-
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 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Children's Experiences Of Epilepsy: A Systematic Review Of Qualitative Studies
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Systematic Review; Epilepsy; Pediatrics; Qualitative Research; Children & Youth; Quality Of Life
Creator
An entity primarily responsible for making the resource
L Chong
Description
An account of the resource
CONTEXT:
Epilepsy is a common and severe neurologic disease associated with increased mortality, seizure-related injury, and adverse psychological and quality-of-life outcomes.
OBJECTIVE:
To describe the perspectives of children and adolescents with epilepsy.
DATA SOURCES:
Medline, Embase, PsycINFO, and CINAHL from inception to August 2015.
STUDY SELECTION:
Qualitative studies on children's experiences of epilepsy.
DATA EXTRACTION:
Results from primary studies. We used thematic synthesis to analyze the findings.
RESULTS:
Forty-three articles involving 951 participants aged 3 to 21 years across 21 countries were included. We identified 6 themes: loss of bodily control (being overtaken, susceptibility to physical harm, fragility of the brain, alertness to mortality, incapacitating fatigue), loss of privacy (declarative disease, humiliating involuntary function, unwanted special attention, social embarrassment of medicine-taking), inescapable inferiority and discrimination (vulnerability to prejudice, inability to achieve academically, consciousness of abnormality, parental shame, limiting social freedom), therapeutic burden and futility (unattainable closure, financial burden, overwhelming life disruption, exhaustion from trialing therapies, insurmountable side effects, awaiting a fabled remission), navigating health care (empowerment through information, valuing empathetic and responsive care, unexpected necessity of transition, fragmented and inconsistent care), and recontextualizing to regain normality (distinguishing disease from identity, taking ownership, gaining perspective and maturity, social and spiritual connectedness).
LIMITATIONS:
Non-English articles were excluded.
CONCLUSIONS:
Children with epilepsy experience vulnerability, disempowerment, and discrimination. Repeated treatment failure can raise doubt about the attainment of remission. Addressing stigma, future independence, and fear of death may improve the overall well-being of children with epilepsy.
Identifier
An unambiguous reference to the resource within a given context
doi: 10.1542/peds.2016-0658
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
August 2016 List
Children & Youth
Epilepsy
L Chong
Pediatrics
Qualitative Research
Quality Of Life
Systematic Review