keyword
https://read.qxmd.com/read/21401584/outcomes-in-pediatric-neurology-a-review-of-conceptual-issues-and-recommendationsthe-2010-ronnie-mac-keith-lecture
#21
REVIEW
Gabriel M Ronen, Nora Fayed, Peter L Rosenbaum
This paper discusses how to evaluate whether, and in what ways, treatments affect the lives of children with neurological conditions and their families. We argue that professionals should incorporate perspectives from patients and families to help them make decisions about what 'outcomes' are important, and we discuss how those outcomes might be assessed. A case vignette illustrates the differences and complementarity between the perspectives of clinicians and those of children and their parents. We recommend methods for expanding the range of relevant health outcomes in child neurology to include those that reflect the ways patients and families view their conditions and our interventions...
April 2011: Developmental Medicine and Child Neurology
https://read.qxmd.com/read/21328046/-transient-splenial-lesion-in-influenza-a-h1n1-2009-infection
#22
JOURNAL ARTICLE
K Linden, O Moser, A Simon, A-M Eis-Hübinger, G Fleischhack, M Born, H Tschampa, T Rosenbaum, B Köster, M Lentze
Severe neurologic complications have been rarely reported during novel pandemic influenza A(H1N1) virus infections. We describe the case of an 10-year-old boy with new onset seizures and proven influenza A(H1N1) 2009 infection showing a reversible hyperintense lesion in the splenium of the corpus callosum on T2-weighted and FLAIR magnetic resonance images without contrast enhancement. Transient splenial lesions have been described in the context of virus encephalopathy and do not require specific treatment.
March 2011: Der Radiologe
https://read.qxmd.com/read/20478747/disease-characteristics-and-psychosocial-factors-explaining-the-expression-of-quality-of-life-in-childhood-epilepsy
#23
JOURNAL ARTICLE
Gabriel M Ronen, David L Streiner, Leonard H Verhey, Lucyna Lach, Michael H Boyle, Charles E Cunningham, Peter L Rosenbaum
OBJECTIVES: To explore, identify and understand the contribution that biomedical and psychosocial factors make to the assessment of health-related quality of life (HRQL) of children and youth with epilepsy using the CHEQOL-25. METHODS: We identified and measured variables that may influence HRQL; grouped the variables into four conceptual categories; and used simple and hierarchical linear regressions to model CHEQOL-25 as a function of these variable groupings...
May 2010: Epilepsy & Behavior: E&B
https://read.qxmd.com/read/19627340/quality-of-life-instruments-for-children-and-adolescents-with-neurodisabilities-how-to-choose-the-appropriate-instrument
#24
REVIEW
Elizabeth Waters, Elise Davis, Gabriel M Ronen, Peter Rosenbaum, Michael Livingston, Saroj Saigal
AIM: There are many misconceptions about what constitutes 'quality of life' (QoL). It is often difficult for researchers and clinicians to determine which instruments will be most appropriate to their purpose. The aim of the current paper is to describe QoL instruments for children and adolescents with neurodisabilities against criteria that we think are important when choosing or developing a QoL instrument. METHOD: QoL instruments for children and adolescents with neurodisabilities were reviewed and described based on their purpose, conceptual focus, origin of domains and items, opportunity for self report, clarity (lack of ambiguity), potential threat to self-esteem, cognitive or emotional burden, number of items and time to complete, and psychometric properties...
August 2009: Developmental Medicine and Child Neurology
https://read.qxmd.com/read/19126437/quality-of-life-in-childhood-epilepsy-what-is-the-level-of-agreement-between-youth-and-their-parents
#25
JOURNAL ARTICLE
L H Verhey, D M Kulik, G M Ronen, P Rosenbaum, L Lach, D L Streiner
Children and parents evaluate the child's quality of life (QOL) from their own perspectives; therefore, responses may differ, especially in abstract domains. We examined differences between self- and proxy-reported QOL of children with epilepsy. Children with active epilepsy (N=375) and their parents (N=378) separately completed the CHEQOL-25, a condition-specific QOL measure. The intraclass correlation coefficient was used to determine interrater agreement. Concordance on the Total CHEQOL-25 was 0.45 (P<0...
February 2009: Epilepsy & Behavior: E&B
https://read.qxmd.com/read/18158271/health-related-quality-of-life-of-children-with-epilepsy-in-hong-kong-how-does-it-compare-with-that-of-youth-with-epilepsy-in-canada
#26
COMPARATIVE STUDY
Winnie K L Yam, Gabriel M Ronen, Sharon W W Cherk, Peter Rosenbaum, K Y Chan, David L Streiner, Sally W W Cheng, C W Fung, Jackson C S Ho, Karen L Kwong, Louis C K Ma, David K H Ma, K W Tsui, Virginia Wong, Theresa Y L Wong
OBJECTIVE: The primary aim of our study was to compare the health-related quality of life (HRQL) of children with epilepsy in Hong Kong with that of children with epilepsy in Canada, and to explore possible factors affecting these findings. A second interest was to determine agreement between proxy reports and self-ratings among children with epilepsy in Hong Kong, compare these with findings in Canada, and identify factors that influence the concordance. METHODS: Child self-report and parent-proxy questionnaires on an epilepsy-specific HRQL measure, appropriately translated and validated in Chinese, were administered to 266 Hong Kong children and their parents...
April 2008: Epilepsy & Behavior: E&B
https://read.qxmd.com/read/16972164/health-related-quality-of-life-in-youth-with-epilepsy-theoretical-model-for-clinicians-and-researchers-part-i-the-role-of-epilepsy-and-co-morbidity
#27
REVIEW
Lucyna M Lach, Gabriel M Ronen, Peter L Rosenbaum, Charles Cunningham, Michael H Boyle, Shauna Bowman, David L Streiner
Children and adolescents with epilepsy are at increased risk for poor health-related quality of life (HRQL) even in the absence of active seizures. Clinicians who aim to achieve optimal seizure control also need to focus on improving HRQL. This can only be accomplished by recognizing how different features of the epilepsy itself, co-morbid conditions, as well as psychosocial factors can all make a difference to HRQL. These psychosocial factors include child, family and community/society variables that play a role in the well-being of these children...
September 2006: Quality of Life Research
https://read.qxmd.com/read/15230715/fanconi-syndrome-caused-by-antiepileptic-therapy-with-valproic-acid
#28
JOURNAL ARTICLE
Martin Knorr, Jörg Schaper, Malte Harjes, Ertan Mayatepek, Thorsten Rosenbaum
PURPOSE: Valproic acid (VPA) is commonly used as an antiepileptic drug (AED). Regular screening for renal side effects is uncommon. Fanconi syndrome, a generalized dysfunction of renal proximal tubular cells, occurs with some inborn errors of metabolism. In addition, it can be acquired by exposure to several toxic substances. We report a case of Fanconi syndrome after long-term therapy with VPA. METHODS: An 8-year-old severely disabled and developmentally retarded boy with epilepsy was treated with VPA over a period of 7 years...
July 2004: Epilepsia
https://read.qxmd.com/read/14854290/life-situations-emotions-and-idiopathic-epilepsy
#29
JOURNAL ARTICLE
J HIGGINS, H LEDERER, M ROSENBAUM
No abstract text is available yet for this article.
December 1949: Research Publications—Association for Research in Nervous and Mental Disease
https://read.qxmd.com/read/14498989/health-related-quality-of-life-in-childhood-epilepsy-moving-beyond-seizure-control-with-minimal-adverse-effects
#30
REVIEW
Gabriel M Ronen, David L Streiner, Peter Rosenbaum
Childhood epilepsy is one of the most important and prevalent neurological conditions in the developing years. Persons with childhood onset epilepsy are at a high risk for poor psychosocial outcomes, even without experiencing co-morbidities. The goal of management of children with epilepsy should be to enable the child and the family to lead a life as free as possible from the medical and psychosocial complications of epilepsy. This comprehensive care needs to go beyond simply trying to control seizures with minimal adverse drug reactions...
2003: Health and Quality of Life Outcomes
https://read.qxmd.com/read/12681011/health-related-quality-of-life-in-children-with-epilepsy-development-and-validation-of-self-report-and-parent-proxy-measures
#31
JOURNAL ARTICLE
Gabriel M Ronen, David L Streiner, Peter Rosenbaum
PURPOSE: To answer a need to include and measure accurately the impact and burden of epilepsy as outcomes of interventions with affected children, we developed and validated self-report and parent-proxy respondent health-related quality of life (HRQL) instruments for preadolescent children with epilepsy. METHODS: We combined qualitative and quantitative research methods. Items were extracted from focus group discussions involving children with epilepsy and their parents...
April 2003: Epilepsia
https://read.qxmd.com/read/11508477/health-related-quality-of-life-in-childhood-disorders-a-modified-focus-group-technique-to-involve-children
#32
JOURNAL ARTICLE
G M Ronen, P Rosenbaum, M Law, D L Streiner
OBJECTIVES: Qualitative methodology has been under-utilized in child health research due to lack of a specific set of instruments. The objective of this study was to develop a child-centred qualitative research methodology to facilitate direct exploration of health-related quality of life (HRQL) issues and to identify the quality of life elements in pre-adolescent children with a chronic medical condition. STUDY DESIGN: Purposeful stratified sampling of children, ages 6-12, who function in a regular school class, with active epilepsy who were assembled in small focus groups...
2001: Quality of Life Research
https://read.qxmd.com/read/11261507/genome-scan-of-idiopathic-generalized-epilepsy-evidence-for-major-susceptibility-gene-and-modifying-genes-influencing-the-seizure-type
#33
JOURNAL ARTICLE
M Durner, M A Keddache, L Tomasini, S Shinnar, S R Resor, J Cohen, C Harden, S L Moshe, D Rosenbaum, H Kang, K Ballaban-Gil, S Hertz, D R Labar, D Luciano, S Wallace, D Yohai, I Klotz, E Dicker, D A Greenberg
Idiopathic generalized epilepsy (IGE) is a common, complex disease with an almost exclusively genetic etiology but with variable phenotypes. Clinically, IGE can be divided into different syndromes. Varying lines of evidence point to the involvement of several interacting genes in the etiology of IGE. We performed a genome scan in 91 families ascertained through a proband with adolescent-onset IGE. The IGEs included juvenile myoclonic epilepsy (JME), juvenile absence epilepsy (JAE), and epilepsy with generalized tonic clonic seizures (EGTCS)...
March 2001: Annals of Neurology
https://read.qxmd.com/read/10726844/cerebrospinal-fluid-free-choline-in-movement-disorders-of-paediatric-onset
#34
COMPARATIVE STUDY
M R Pranzatelli, I Hanin, E Tate, G Kindel, A Bergin, C M Brown, P Habersang, R Habersang, K J Mack, B Rosenbaum, K A Selby, M Vasconcellos
We measured free choline in cerebrospinal fluid (CSF) of 78 patients with movement disorders of paediatric onset and various controls as a putative index of central phospholipid metabolism. Most of the disorders studied were myoclonic disorders, such as progressive myoclonus epilepsy, the opsoclonus-myoclonus syndrome, and essential myoclonus, but other movement disorders, interictal seizure disorders, and different neurological and nonneurological disorders were also included. There were no significant differences in CSF choline concentrations in myoclonic disorders or other movement disorders compared with controls...
1998: European Journal of Paediatric Neurology: EJPN
https://read.qxmd.com/read/10686551/no-evidence-for-a-major-susceptibility-locus-for-juvenile-myoclonic-epilepsy-on-chromosome-15q
#35
JOURNAL ARTICLE
M Durner, S Shinnar, S R Resor, S L Moshe, D Rosenbaum, J Cohen, C Harden, H Kang, S Hertz, S Wallace, D Luciano, K Ballaban-Gil, D A Greenberg
Juvenile myoclonic epilepsy (JME) is a distinct epileptic syndrome with a complex mode of inheritance. Several studies found evidence for a locus involved in JME on chromosome 6 near the HLA region. Recently, Elmslie et al. [1997] reported evidence of linkage in JME to chromosome 15q14 assuming a recessive mode of inheritance with 50% penetrance and 65% linked families. The area on chromosome 15q14 encompasses the location of the gene for the alpha-7 subunit of the nicotinic acetylcholine receptor. This could fit the hypothesis that there are two interacting loci, one on chromosome 6 and on chromosome 15 or that there is genetic heterogeneity in JME...
February 7, 2000: American Journal of Medical Genetics
https://read.qxmd.com/read/10677311/reproducibility-and-complications-in-gene-searches-linkage-on-chromosome-6-heterogeneity-association-and-maternal-inheritance-in-juvenile-myoclonic-epilepsy
#36
JOURNAL ARTICLE
D A Greenberg, M Durner, M Keddache, S Shinnar, S R Resor, S L Moshe, D Rosenbaum, J Cohen, C Harden, H Kang, S Wallace, D Luciano, K Ballaban-Gil, L Tomasini, G Zhou, I Klotz, E Dicker
Evidence for genetic influences in epilepsy is strong, but reports identifying specific chromosomal origins of those influences conflict. One early study reported that human leukocyte antigen (HLA) markers were genetically linked to juvenile myoclonic epilepsy (JME); this was confirmed in a later study. Other reports did not find linkage to HLA markers. One found evidence of linkage to markers on chromosome 15, another to markers on chromosome 6, centromeric to HLA. We identified families through a patient with JME and genotyped markers throughout chromosome 6...
February 2000: American Journal of Human Genetics
https://read.qxmd.com/read/10479044/health-related-quality-of-life-in-childhood-epilepsy-the-results-of-children-s-participation-in-identifying-the-components
#37
JOURNAL ARTICLE
G M Ronen, P Rosenbaum, M Law, D L Streiner
Separate groups of children with epilepsy, recruited from a regional pediatric epilepsy database, and their parents were established to discuss their life with epilepsy. Twenty-nine children (aged between 6 years and 10 years 4 months) and 42 of their parents were placed into nine and 17 groups respectively. The participants provided information about their own perceptions of life with epilepsy. Discussions were taped and textual analysis followed to extract, understand, explain, and categorize the health-related quality of life (HRQL) components...
August 1999: Developmental Medicine and Child Neurology
https://read.qxmd.com/read/10205274/evidence-for-linkage-of-adolescent-onset-idiopathic-generalized-epilepsies-to-chromosome-8-and-genetic-heterogeneity
#38
JOURNAL ARTICLE
M Durner, G Zhou, D Fu, P Abreu, S Shinnar, S R Resor, S L Moshe, D Rosenbaum, J Cohen, C Harden, H Kang, S Wallace, D Luciano, K Ballaban-Gil, I Klotz, E Dicker, D A Greenberg
Several loci and candidate genes for epilepsies or epileptic syndromes map or have been suggested to map to chromosome 8. We investigated families with adolescent-onset idiopathic generalized epilepsy (IGE), for linkage to markers spanning chromosome 8. The IGEs that we studied included juvenile myoclonic epilepsy (JME), epilepsy with only generalized tonic-clonic seizures occurring either randomly during the day (random grand mal) or on awakening (awakening grand mal), and juvenile absence epilepsy (JAE). We looked for a gene common to all these IGEs, but we also investigated linkage to specific subforms of IGE...
May 1999: American Journal of Human Genetics
https://read.qxmd.com/read/9110337/assessment-of-differential-attention-mechanisms-in-seizure-disorders-and-schizophrenia
#39
JOURNAL ARTICLE
P C Goldstein, G Rosenbaum, M J Taylor
This study examines differential attention deficits in 19 temporal lobe epilepsy (TLE) patients, 15 generalized seizure patients (GSP), and 19 schizophrenic patients, compared to 20 normal controls. All participants were tested on a variable foreperiod reaction time (RT) task and continuous performance test (CPT). Temporal lobe epilepsy patients and schizophrenic patients show crossover deficits on the RT task requiring a conscious, effortful, preparatory motor set; while GSP show impairments on the CPT requiring vigilant, self-directed attention to external stimuli...
April 1997: Neuropsychology
https://read.qxmd.com/read/8797474/association-of-hla-class-ii-alleles-in-patients-with-juvenile-myoclonic-epilepsy-compared-with-patients-with-other-forms-of-adolescent-onset-generalized-epilepsy
#40
COMPARATIVE STUDY
D A Greenberg, M Durner, S Shinnar, S Resor, D Rosenbaum, I Klotz, E Dicker, M Keddache, G Zhou, X Yang, L Altstiel
Reports have suggested an association of juvenile myoclonic epilepsy (JME) with an HLA-DR allele. We examined the HLA-DR and DQ frequencies in two populations of epilepsy patients: (1) JME patients and (2) patients with other forms of adolescent-onset, idiopathic generalized epilepsy (IGE). We did DNA-based HLA typing on 24 JME patients and 24 patients with non-JME forms of adolescent-onset IGE, forms that are clinically similar to JME. In typing the HLA region, we paid particular attention to the alleles contributing to the HLA-DR13 type and also to the DQB1 locus alleles that are in linkage disequilibrium with the alleles that comprise the DR13 type...
September 1996: Neurology
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