A Comparison of Autism Prevalence Trends in Denmark and Western Australia / Erik T. PARNER in Journal of Autism and Developmental Disorders, 41-12 (December 2011)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 41-12 (December 2011) . - p.1601-1608 Titre : A Comparison of Autism Prevalence Trends in Denmark and Western Australia Type de document : Texte imprimé et/ou numérique Auteurs : Erik T. PARNER, Auteur ; Poul THORSEN, Auteur ; Glenys DIXON, Auteur ; Nicholas H. DE KLERK, Auteur ; Helen LEONARD, Auteur ; Natasha NASSAR, Auteur ; Jenny BOURKE, Auteur ; Carol BOWER, Auteur ; Emma J. GLASSON, Auteur Année de publication : 2011 Article en page(s) : p.1601-1608 Langues : Anglais (eng) Mots-clés : Autism  Autism spectrum disorders  Prevalence  Diagnosis  Denmark  Western Australia Index. décimale : PER Périodiques Résumé : Prevalence statistics for autism spectrum disorders (ASD) vary widely across geographical boundaries. Some variation can be explained by diagnostic methods, case ascertainment and age at diagnosis. This study compared prevalence statistics for two distinct geographical regions, Denmark and Western Australia, both of which have had population-based registers and consistent classification systems operating over the past decade. Overall ASD prevalence rates were higher in Denmark (68.5 per 10,000 children) compared with Western Australia (51.0 per 10,000 children), while the diagnosis of childhood autism was more prevalent in Western Australia (39.3 per 10,000 children) compared with Denmark (21.8 per 10,000 children). These differences are probably caused by local phenomena affecting case ascertainment but influence from biological or geographical factors may exist. En ligne : http://dx.doi.org/10.1007/s10803-011-1186-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=148 [article] A Comparison of Autism Prevalence Trends in Denmark and Western Australia [Texte imprimé et/ou numérique] / Erik T. PARNER, Auteur ; Poul THORSEN, Auteur ; Glenys DIXON, Auteur ; Nicholas H. DE KLERK, Auteur ; Helen LEONARD, Auteur ; Natasha NASSAR, Auteur ; Jenny BOURKE, Auteur ; Carol BOWER, Auteur ; Emma J. GLASSON, Auteur . - 2011 . - p.1601-1608. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 41-12 (December 2011) . - p.1601-1608 Mots-clés : Autism  Autism spectrum disorders  Prevalence  Diagnosis  Denmark  Western Australia Index. décimale : PER Périodiques Résumé : Prevalence statistics for autism spectrum disorders (ASD) vary widely across geographical boundaries. Some variation can be explained by diagnostic methods, case ascertainment and age at diagnosis. This study compared prevalence statistics for two distinct geographical regions, Denmark and Western Australia, both of which have had population-based registers and consistent classification systems operating over the past decade. Overall ASD prevalence rates were higher in Denmark (68.5 per 10,000 children) compared with Western Australia (51.0 per 10,000 children), while the diagnosis of childhood autism was more prevalent in Western Australia (39.3 per 10,000 children) compared with Denmark (21.8 per 10,000 children). These differences are probably caused by local phenomena affecting case ascertainment but influence from biological or geographical factors may exist. En ligne : http://dx.doi.org/10.1007/s10803-011-1186-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=148

Measuring use and cost of health sector and related care in a population of girls and young women with Rett syndrome / Delia HENDRIE in Research in Autism Spectrum Disorders, 5-2 (April-June 2011)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 5-2 (April-June 2011) . - p.901-909 Titre : Measuring use and cost of health sector and related care in a population of girls and young women with Rett syndrome Type de document : Texte imprimé et/ou numérique Auteurs : Delia HENDRIE, Auteur ; Ami BEBBINGTON, Auteur ; Carol BOWER, Auteur ; Helen LEONARD, Auteur Année de publication : 2011 Article en page(s) : p.901-909 Langues : Anglais (eng) Mots-clés : Rett syndrome  Healthcare  Costs  Resources  Population-based Index. décimale : PER Périodiques Résumé : This study measured use and cost of health sector and related services in Rett syndrome and effects of socio-demographic, clinical severity and genetic factors on costs. The study population consisted of individuals with Rett syndrome registered with the Australian Rett Syndrome Database in 2004. Descriptive analysis was used to examine patterns of resource use and costs, and logistic regression to analyse factors associated with higher costs. We found the use of health sector and related resources varied by type of resource. Mean annual cost per case was $21,158 (range $238–$85,776). High cost items included long-term residential care, therapy services out of school and paid home and community care. Factors associated with increasing odds of being above the median cost were clinical severity and the p.R255X mutation. Compared with the youngest cases, cases in the 5–14 year age group and the 15–24 year age group were at lower odds of being above the median cost. Needs relating to health sector and related resources can result in considerable costs for individuals with Rett syndrome. Many households caring for dependents with Rett syndrome are like to be facing undue financial pressures from the additional costs of disability. En ligne : http://dx.doi.org/10.1016/j.rasd.2010.10.004 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=114 [article] Measuring use and cost of health sector and related care in a population of girls and young women with Rett syndrome [Texte imprimé et/ou numérique] / Delia HENDRIE, Auteur ; Ami BEBBINGTON, Auteur ; Carol BOWER, Auteur ; Helen LEONARD, Auteur . - 2011 . - p.901-909. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 5-2 (April-June 2011) . - p.901-909 Mots-clés : Rett syndrome  Healthcare  Costs  Resources  Population-based Index. décimale : PER Périodiques Résumé : This study measured use and cost of health sector and related services in Rett syndrome and effects of socio-demographic, clinical severity and genetic factors on costs. The study population consisted of individuals with Rett syndrome registered with the Australian Rett Syndrome Database in 2004. Descriptive analysis was used to examine patterns of resource use and costs, and logistic regression to analyse factors associated with higher costs. We found the use of health sector and related resources varied by type of resource. Mean annual cost per case was $21,158 (range $238–$85,776). High cost items included long-term residential care, therapy services out of school and paid home and community care. Factors associated with increasing odds of being above the median cost were clinical severity and the p.R255X mutation. Compared with the youngest cases, cases in the 5–14 year age group and the 15–24 year age group were at lower odds of being above the median cost. Needs relating to health sector and related resources can result in considerable costs for individuals with Rett syndrome. Many households caring for dependents with Rett syndrome are like to be facing undue financial pressures from the additional costs of disability. En ligne : http://dx.doi.org/10.1016/j.rasd.2010.10.004 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=114

The relationship between MECP2 mutation type and health status and service use trajectories over time in a Rett syndrome population / Deidra YOUNG in Research in Autism Spectrum Disorders, 5-1 (January-March 2011)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 5-1 (January-March 2011) . - p.442-449 Titre : The relationship between MECP2 mutation type and health status and service use trajectories over time in a Rett syndrome population Type de document : Texte imprimé et/ou numérique Auteurs : Deidra YOUNG, Auteur ; Helen LEONARD, Auteur ; Carol BOWER, Auteur ; Ami BEBBINGTON, Auteur ; Nick DE KLERK, Auteur ; Lakshmi NAGARAJAN, Auteur Année de publication : 2011 Article en page(s) : p.442-449 Langues : Anglais (eng) Mots-clés : Rett-syndrome Health-status Health-service-use Trajectory Longitudinal MECP2-mutation Multilevel-regression Index. décimale : PER Périodiques Résumé : This study aimed to investigate the trajectories over time of health status and health service use in Rett syndrome by mutation type. Data were obtained from questionnaires administered over 6 years to 256 participants from the Australian Rett Syndrome Database. Health status (episodes of illness and medication load) and health service use (general practitioner and specialist visits and hospital stays) were summarized into composite scores with principal component analysis. Linear and mixed regression models examined effects of mutation type and other variables on these scores over time. For some mutations (such as p.R255X and p.R168X) health status was poorer at a younger age and improved over time, while for p.R133C it was better at a younger age and deteriorated with time. For those with p.R133C health service use was lowest at a younger age and highest at 25 years. With other mutations, such as p.R255X, p.R270X, p.R294X, C terminal and p.R306C, health service use was higher at a younger age, but dropped off considerably by 25 years of age. Health service use generally declined in parallel with deterioration in health status, although this pattern differed by mutation type, demonstrating important variability in the course of Rett syndrome. En ligne : http://dx.doi.org/10.1016/j.rasd.2010.06.007 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=111 [article] The relationship between MECP2 mutation type and health status and service use trajectories over time in a Rett syndrome population [Texte imprimé et/ou numérique] / Deidra YOUNG, Auteur ; Helen LEONARD, Auteur ; Carol BOWER, Auteur ; Ami BEBBINGTON, Auteur ; Nick DE KLERK, Auteur ; Lakshmi NAGARAJAN, Auteur . - 2011 . - p.442-449. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 5-1 (January-March 2011) . - p.442-449 Mots-clés : Rett-syndrome Health-status Health-service-use Trajectory Longitudinal MECP2-mutation Multilevel-regression Index. décimale : PER Périodiques Résumé : This study aimed to investigate the trajectories over time of health status and health service use in Rett syndrome by mutation type. Data were obtained from questionnaires administered over 6 years to 256 participants from the Australian Rett Syndrome Database. Health status (episodes of illness and medication load) and health service use (general practitioner and specialist visits and hospital stays) were summarized into composite scores with principal component analysis. Linear and mixed regression models examined effects of mutation type and other variables on these scores over time. For some mutations (such as p.R255X and p.R168X) health status was poorer at a younger age and improved over time, while for p.R133C it was better at a younger age and deteriorated with time. For those with p.R133C health service use was lowest at a younger age and highest at 25 years. With other mutations, such as p.R255X, p.R270X, p.R294X, C terminal and p.R306C, health service use was higher at a younger age, but dropped off considerably by 25 years of age. Health service use generally declined in parallel with deterioration in health status, although this pattern differed by mutation type, demonstrating important variability in the course of Rett syndrome. En ligne : http://dx.doi.org/10.1016/j.rasd.2010.06.007 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=111

Unpacking the complex nature of the autism epidemic / Helen LEONARD in Research in Autism Spectrum Disorders, 4-4 (October-December 2010)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 4-4 (October-December 2010) . - p.548-554 Titre : Unpacking the complex nature of the autism epidemic Type de document : Texte imprimé et/ou numérique Auteurs : Helen LEONARD, Auteur ; Andrew J. O. WHITEHOUSE, Auteur ; Glenys DIXON, Auteur ; Jenny BOURKE, Auteur ; Karina AIBERTI, Auteur ; Natasha NASSAR, Auteur ; Carol BOWER, Auteur ; Emma J. GLASSON, Auteur Année de publication : 2010 Article en page(s) : p.548-554 Langues : Anglais (eng) Mots-clés : Autistic-disorder Autism Autism-spectrum-disorder Diagnosis Intellectual-disability Autism-epidemic Index. décimale : PER Périodiques Résumé : The etiology of autism spectrum disorders is unknown but there are claims of increasing prevalence in many countries. Despite more than a decade of epidemiological investigation, it is still unclear whether the rising trend in prevalence reflects a true increase or changes in diagnostic trends and improvements in case ascertainment. This paper discusses changes in diagnostic criteria, decreasing age at diagnosis, improved case ascertainment, diagnostic substitution, and social and cultural influences on the overall effects on prevalence, including the role of an ASD diagnosis as a gateway to funding. The evidence suggests that the increased prevalence of autism spectrum disorder can be partly supported by each of these factors, but remains largely unquantified due to a variety of other global and local factors. The question of how much of a real increase in prevalence has occurred remains crucially important to understand the classification, epidemiology and etiology of autism spectrum disorders but can only be answered if controlling these other factors. En ligne : http://dx.doi.org/10.1016/j.rasd.2010.01.003 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=102 [article] Unpacking the complex nature of the autism epidemic [Texte imprimé et/ou numérique] / Helen LEONARD, Auteur ; Andrew J. O. WHITEHOUSE, Auteur ; Glenys DIXON, Auteur ; Jenny BOURKE, Auteur ; Karina AIBERTI, Auteur ; Natasha NASSAR, Auteur ; Carol BOWER, Auteur ; Emma J. GLASSON, Auteur . - 2010 . - p.548-554. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 4-4 (October-December 2010) . - p.548-554 Mots-clés : Autistic-disorder Autism Autism-spectrum-disorder Diagnosis Intellectual-disability Autism-epidemic Index. décimale : PER Périodiques Résumé : The etiology of autism spectrum disorders is unknown but there are claims of increasing prevalence in many countries. Despite more than a decade of epidemiological investigation, it is still unclear whether the rising trend in prevalence reflects a true increase or changes in diagnostic trends and improvements in case ascertainment. This paper discusses changes in diagnostic criteria, decreasing age at diagnosis, improved case ascertainment, diagnostic substitution, and social and cultural influences on the overall effects on prevalence, including the role of an ASD diagnosis as a gateway to funding. The evidence suggests that the increased prevalence of autism spectrum disorder can be partly supported by each of these factors, but remains largely unquantified due to a variety of other global and local factors. The question of how much of a real increase in prevalence has occurred remains crucially important to understand the classification, epidemiology and etiology of autism spectrum disorders but can only be answered if controlling these other factors. En ligne : http://dx.doi.org/10.1016/j.rasd.2010.01.003 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=102

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