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

Use of equipment and respite services and caregiver health among Australian families living with Rett syndrome / Anna URBANOWICZ 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.722-732 Titre : Use of equipment and respite services and caregiver health among Australian families living with Rett syndrome Type de document : Texte imprimé et/ou numérique Auteurs : Anna URBANOWICZ, Auteur ; Jenny DOWNS, Auteur ; Ami BEBBINGTON, Auteur ; Peter JACOBY, Auteur ; Sonya GIRDLER, Auteur ; Helen LEONARD, Auteur Année de publication : 2011 Article en page(s) : p.722-732 Langues : Anglais (eng) Mots-clés : Rett syndrome  Respite  Equipment  Maternal health  Maternal wellbeing  SF-12 Index. décimale : PER Périodiques Résumé : This study assessed factors that could influence equipment and respite services use among Australian families caring for a girl/woman with Rett syndrome and examined relationships between use of these resources and the health of female caregivers. Data was sourced from questionnaires completed by families (n = 170) contributing to the Australian Rett Syndrome Database in 2004 and 2006. Regression analysis was used to assess relationships between child factors (age, mobility, clinical severity and behaviour), family factors (accessibility and socio-economic factors) and the use of equipment and respite services in 2004, and relationships between resource use in 2004 and health of female caregivers as measured by the SF-12 in 2006. In 2004, the majority (88.3%) of families used at least one piece of equipment with more equipment use associated with greater mobility restrictions. Home respite services were used by 54.9% of families and overnight respite services by 47.6% of families. Use of more home respite services was associated with severely restricted levels of mobility and mothers having a vocational or university qualification. Use of more overnight respite services was associated with increasing age of the girl/woman with Rett syndrome and mothers being employed while use of less overnight respite services was associated with increasingly difficult behaviours in the girl/woman. In 2006, female caregivers had a mean mental health score of 41.1 (95% CI 38.9–43.3) and no relationships with previous resource use were identified. The mean physical health score of female caregivers was 48.7 (95% CI 46.8–50.5) and lower scores were associated with the use of equipment and overnight respite services. Equipment was a widely used resource whereas respite services, particularly overnight services, were used less widely. Further investigation of the reasons for this and alternative support strategies is indicated. En ligne : http://dx.doi.org/10.1016/j.rasd.2010.08.006 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=114 [article] Use of equipment and respite services and caregiver health among Australian families living with Rett syndrome [Texte imprimé et/ou numérique] / Anna URBANOWICZ, Auteur ; Jenny DOWNS, Auteur ; Ami BEBBINGTON, Auteur ; Peter JACOBY, Auteur ; Sonya GIRDLER, Auteur ; Helen LEONARD, Auteur . - 2011 . - p.722-732. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 5-2 (April-June 2011) . - p.722-732 Mots-clés : Rett syndrome  Respite  Equipment  Maternal health  Maternal wellbeing  SF-12 Index. décimale : PER Périodiques Résumé : This study assessed factors that could influence equipment and respite services use among Australian families caring for a girl/woman with Rett syndrome and examined relationships between use of these resources and the health of female caregivers. Data was sourced from questionnaires completed by families (n = 170) contributing to the Australian Rett Syndrome Database in 2004 and 2006. Regression analysis was used to assess relationships between child factors (age, mobility, clinical severity and behaviour), family factors (accessibility and socio-economic factors) and the use of equipment and respite services in 2004, and relationships between resource use in 2004 and health of female caregivers as measured by the SF-12 in 2006. In 2004, the majority (88.3%) of families used at least one piece of equipment with more equipment use associated with greater mobility restrictions. Home respite services were used by 54.9% of families and overnight respite services by 47.6% of families. Use of more home respite services was associated with severely restricted levels of mobility and mothers having a vocational or university qualification. Use of more overnight respite services was associated with increasing age of the girl/woman with Rett syndrome and mothers being employed while use of less overnight respite services was associated with increasingly difficult behaviours in the girl/woman. In 2006, female caregivers had a mean mental health score of 41.1 (95% CI 38.9–43.3) and no relationships with previous resource use were identified. The mean physical health score of female caregivers was 48.7 (95% CI 46.8–50.5) and lower scores were associated with the use of equipment and overnight respite services. Equipment was a widely used resource whereas respite services, particularly overnight services, were used less widely. Further investigation of the reasons for this and alternative support strategies is indicated. En ligne : http://dx.doi.org/10.1016/j.rasd.2010.08.006 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=114

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