Caring for a Child with Autism Spectrum Disorder and Parents’ Quality of Life: Application of the CarerQol / Renske HOEFMAN in Journal of Autism and Developmental Disorders, 44-8 (August 2014)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 44-8 (August 2014) . - p.1933-1945 Titre : Caring for a Child with Autism Spectrum Disorder and Parents’ Quality of Life: Application of the CarerQol Type de document : Texte imprimé et/ou numérique Auteurs : Renske HOEFMAN, Auteur ; Nalin PAYAKACHAT, Auteur ; Job VAN EXEL, Auteur ; Karen A. KUHLTHAU, Auteur ; Erica KOVACS, Auteur ; Jeffrey PYNE, Auteur ; J. Mick TILFORD, Auteur Article en page(s) : p.1933-1945 Langues : Anglais (eng) Mots-clés : Family caregiving  Subjective burden  Autism spectrum disorders (ASDs)  Quality of life  CarerQol  Construct validation Index. décimale : PER Périodiques Résumé : This study describes the impact of caregiving on parents of children with autism spectrum disorders (ASDs). Secondly, we investigate construct validation of the care-related quality of life instrument (CarerQol) measuring impact of caregiving. Primary caregivers of children with ASDs were included. Many parents experienced considerable problems combining daily activities with care, had financial problems or suffered from depressive mood. Validity tests showed that a higher impact of caring on the CarerQol was positively associated with higher subjective burden and lower family quality of life. Most of the associations between CarerQol scores and background characteristics confirmed previous research. The CarerQol validly measures the impact of caregiving for children with ASDs on caregivers in our sample. The CarerQol may therefore be useful for including parent outcomes in research on ASDs. En ligne : http://dx.doi.org/10.1007/s10803-014-2066-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=236 [article] Caring for a Child with Autism Spectrum Disorder and Parents’ Quality of Life: Application of the CarerQol [Texte imprimé et/ou numérique] / Renske HOEFMAN, Auteur ; Nalin PAYAKACHAT, Auteur ; Job VAN EXEL, Auteur ; Karen A. KUHLTHAU, Auteur ; Erica KOVACS, Auteur ; Jeffrey PYNE, Auteur ; J. Mick TILFORD, Auteur . - p.1933-1945. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 44-8 (August 2014) . - p.1933-1945 Mots-clés : Family caregiving  Subjective burden  Autism spectrum disorders (ASDs)  Quality of life  CarerQol  Construct validation Index. décimale : PER Périodiques Résumé : This study describes the impact of caregiving on parents of children with autism spectrum disorders (ASDs). Secondly, we investigate construct validation of the care-related quality of life instrument (CarerQol) measuring impact of caregiving. Primary caregivers of children with ASDs were included. Many parents experienced considerable problems combining daily activities with care, had financial problems or suffered from depressive mood. Validity tests showed that a higher impact of caring on the CarerQol was positively associated with higher subjective burden and lower family quality of life. Most of the associations between CarerQol scores and background characteristics confirmed previous research. The CarerQol validly measures the impact of caregiving for children with ASDs on caregivers in our sample. The CarerQol may therefore be useful for including parent outcomes in research on ASDs. En ligne : http://dx.doi.org/10.1007/s10803-014-2066-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=236

Predicting Health Utilities for Children With Autism Spectrum Disorders / Nalin PAYAKACHAT in Autism Research, 7-6 (December 2014)  

Public ISBD [article]  inAutism Research > 7-6 (December 2014) . - p.649-663 Titre : Predicting Health Utilities for Children With Autism Spectrum Disorders Type de document : Texte imprimé et/ou numérique Auteurs : Nalin PAYAKACHAT, Auteur ; J. Mick TILFORD, Auteur ; Karen A. KUHLTHAU, Auteur ; N. Job VAN EXEL, Auteur ; Erica KOVACS, Auteur ; Jayne BELLANDO, Auteur ; Jeffrey M. PYNE, Auteur ; Werner B. F. BROUWER, Auteur Article en page(s) : p.649-663 Langues : Anglais (eng) Mots-clés : mapping  predictive algorithms  equating measure  autism  health utilities  clinical measure  behavioral measure  quality of life measure Index. décimale : PER Périodiques Résumé : Comparative effectiveness of interventions for children with autism spectrum disorders (ASDs) that incorporates costs is lacking due to the scarcity of information on health utility scores or preference-weighted outcomes typically used for calculating quality-adjusted life years (QALYs). This study created algorithms for mapping clinical and behavioral measures for children with ASDs to health utility scores. The algorithms could be useful for estimating the value of different interventions and treatments used in the care of children with ASDs. Participants were recruited from two Autism Treatment Network sites. Health utility data based on the Health Utilities Index Mark 3 (HUI3) for the child were obtained from the primary caregiver (proxy-reported) through a survey (N?=?224). During the initial clinic visit, proxy-reported measures of the Child Behavior Checklist, Vineland II Adaptive Behavior Scales, and the Pediatric Quality of Life Inventory 4.0 (start measures) were obtained and then merged with the survey data. Nine mapping algorithms were developed using the HUI3 scores as dependent variables in ordinary least squares regressions along with the start measures, the Autism Diagnostic Observation Schedule, to measure severity, child age, and cognitive ability as independent predictors. In-sample cross-validation was conducted to evaluate predictive accuracy. Multiple imputation techniques were used for missing data. The average age for children with ASDs in this study was 8.4 (standard deviation?=?3.5) years. Almost half of the children (47%) had cognitive impairment (IQ???70). Total scores for all of the outcome measures were significantly associated with the HUI3 score. The algorithms can be applied to clinical studies containing start measures of children with ASDs to predict QALYs gained from interventions. En ligne : http://dx.doi.org/10.1002/aur.1409 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=256 [article] Predicting Health Utilities for Children With Autism Spectrum Disorders [Texte imprimé et/ou numérique] / Nalin PAYAKACHAT, Auteur ; J. Mick TILFORD, Auteur ; Karen A. KUHLTHAU, Auteur ; N. Job VAN EXEL, Auteur ; Erica KOVACS, Auteur ; Jayne BELLANDO, Auteur ; Jeffrey M. PYNE, Auteur ; Werner B. F. BROUWER, Auteur . - p.649-663. Langues : Anglais (eng) in Autism Research > 7-6 (December 2014) . - p.649-663 Mots-clés : mapping  predictive algorithms  equating measure  autism  health utilities  clinical measure  behavioral measure  quality of life measure Index. décimale : PER Périodiques Résumé : Comparative effectiveness of interventions for children with autism spectrum disorders (ASDs) that incorporates costs is lacking due to the scarcity of information on health utility scores or preference-weighted outcomes typically used for calculating quality-adjusted life years (QALYs). This study created algorithms for mapping clinical and behavioral measures for children with ASDs to health utility scores. The algorithms could be useful for estimating the value of different interventions and treatments used in the care of children with ASDs. Participants were recruited from two Autism Treatment Network sites. Health utility data based on the Health Utilities Index Mark 3 (HUI3) for the child were obtained from the primary caregiver (proxy-reported) through a survey (N?=?224). During the initial clinic visit, proxy-reported measures of the Child Behavior Checklist, Vineland II Adaptive Behavior Scales, and the Pediatric Quality of Life Inventory 4.0 (start measures) were obtained and then merged with the survey data. Nine mapping algorithms were developed using the HUI3 scores as dependent variables in ordinary least squares regressions along with the start measures, the Autism Diagnostic Observation Schedule, to measure severity, child age, and cognitive ability as independent predictors. In-sample cross-validation was conducted to evaluate predictive accuracy. Multiple imputation techniques were used for missing data. The average age for children with ASDs in this study was 8.4 (standard deviation?=?3.5) years. Almost half of the children (47%) had cognitive impairment (IQ???70). Total scores for all of the outcome measures were significantly associated with the HUI3 score. The algorithms can be applied to clinical studies containing start measures of children with ASDs to predict QALYs gained from interventions. En ligne : http://dx.doi.org/10.1002/aur.1409 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=256

Quality of life for parents of children with autism spectrum disorders / Karen A. KUHLTHAU in Research in Autism Spectrum Disorders, 8-10 (October 2014)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 8-10 (October 2014) . - p.1339-1350 Titre : Quality of life for parents of children with autism spectrum disorders Type de document : Texte imprimé et/ou numérique Auteurs : Karen A. KUHLTHAU, Auteur ; Nalin PAYAKACHAT, Auteur ; Jennifer DELAHAYE, Auteur ; Jill HURSON, Auteur ; Jeffrey M. PYNE, Auteur ; Erica KOVACS, Auteur ; J. Mick TILFORD, Auteur Article en page(s) : p.1339-1350 Langues : Anglais (eng) Mots-clés : Health-related quality of life  Parent  Parent well-being  Depression Index. décimale : PER Périodiques Résumé : This project describes health-related quality of life (HRQoL) of parents of children with autism spectrum disorders (ASDs) using mixed methods. Parents of children with ASDs (N = 224) reported on their HRQoL, depression, and caregiving burden using quantitative tools. HRQoL scores were slightly worse than from those in normative populations especially related to stress and mental health. For example, parents reported average HRQoL scores from SF-6D of 0.74, which was clinically significant lower than an average normative U.S. population. 40% of parents reported having clinical depression symptoms. Married parents reported lower depression symptoms than parents who were not. In addition, families with three or more children with special health care needs (CSHCN) reported lower HRQL and higher caregiving burden than families with less CSHCN. In the qualitative study, we conducted five focus groups to gain insight as to the reasons a child's ASD might influence a parent's HRQoL. Qualitative data further supports the notion that parental HRQoL was negatively influenced by their child's ASDs. Studies that seek to quantify the influence of ASDs and to assess the effect of interventions for children with ASDs may consider measuring the effects on family members as well. En ligne : http://dx.doi.org/10.1016/j.rasd.2014.07.002 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=239 [article] Quality of life for parents of children with autism spectrum disorders [Texte imprimé et/ou numérique] / Karen A. KUHLTHAU, Auteur ; Nalin PAYAKACHAT, Auteur ; Jennifer DELAHAYE, Auteur ; Jill HURSON, Auteur ; Jeffrey M. PYNE, Auteur ; Erica KOVACS, Auteur ; J. Mick TILFORD, Auteur . - p.1339-1350. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 8-10 (October 2014) . - p.1339-1350 Mots-clés : Health-related quality of life  Parent  Parent well-being  Depression Index. décimale : PER Périodiques Résumé : This project describes health-related quality of life (HRQoL) of parents of children with autism spectrum disorders (ASDs) using mixed methods. Parents of children with ASDs (N = 224) reported on their HRQoL, depression, and caregiving burden using quantitative tools. HRQoL scores were slightly worse than from those in normative populations especially related to stress and mental health. For example, parents reported average HRQoL scores from SF-6D of 0.74, which was clinically significant lower than an average normative U.S. population. 40% of parents reported having clinical depression symptoms. Married parents reported lower depression symptoms than parents who were not. In addition, families with three or more children with special health care needs (CSHCN) reported lower HRQL and higher caregiving burden than families with less CSHCN. In the qualitative study, we conducted five focus groups to gain insight as to the reasons a child's ASD might influence a parent's HRQoL. Qualitative data further supports the notion that parental HRQoL was negatively influenced by their child's ASDs. Studies that seek to quantify the influence of ASDs and to assess the effect of interventions for children with ASDs may consider measuring the effects on family members as well. En ligne : http://dx.doi.org/10.1016/j.rasd.2014.07.002 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=239

Treatment for Sleep Problems in Children with Autism and Caregiver Spillover Effects / J. Mick TILFORD in Journal of Autism and Developmental Disorders, 45-11 (November 2015)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 45-11 (November 2015) . - p.3613-3623 Titre : Treatment for Sleep Problems in Children with Autism and Caregiver Spillover Effects Type de document : Texte imprimé et/ou numérique Auteurs : J. Mick TILFORD, Auteur ; Nalin PAYAKACHAT, Auteur ; Karen A. KUHLTHAU, Auteur ; Jeffrey M. PYNE, Auteur ; Erica KOVACS, Auteur ; Jayne BELLANDO, Auteur ; D. Keith WILLIAMS, Auteur ; Werner B. F. BROUWER, Auteur ; Richard E. FRYE, Auteur Article en page(s) : p.3613-3623 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Child health  Caregiver health  Child sleep habits  Quality adjusted life year  Cost-effectiveness analysis Index. décimale : PER Périodiques Résumé : Sleep problems in children with autism spectrum disorders (ASD) are under-recognized and under-treated. Identifying treatment value accounting for health effects on family members (spillovers) could improve the perceived cost-effectiveness of interventions to improve child sleep habits. A prospective cohort study (N = 224) was conducted with registry and postal survey data completed by the primary caregiver. We calculated quality of life outcomes for the child and the primary caregiver associated with treatments to improve sleep in the child based on prior clinical trials. Predicted treatment effects for melatonin and behavioral interventions were similar in magnitude for the child and for the caregiver. Accounting for caregiver spillover effects associated with treatments for the child with ASD increases treatment benefits and improves cost-effectiveness profiles. En ligne : http://dx.doi.org/10.1007/s10803-015-2507-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=270 [article] Treatment for Sleep Problems in Children with Autism and Caregiver Spillover Effects [Texte imprimé et/ou numérique] / J. Mick TILFORD, Auteur ; Nalin PAYAKACHAT, Auteur ; Karen A. KUHLTHAU, Auteur ; Jeffrey M. PYNE, Auteur ; Erica KOVACS, Auteur ; Jayne BELLANDO, Auteur ; D. Keith WILLIAMS, Auteur ; Werner B. F. BROUWER, Auteur ; Richard E. FRYE, Auteur . - p.3613-3623. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 45-11 (November 2015) . - p.3613-3623 Mots-clés : Autism spectrum disorder  Child health  Caregiver health  Child sleep habits  Quality adjusted life year  Cost-effectiveness analysis Index. décimale : PER Périodiques Résumé : Sleep problems in children with autism spectrum disorders (ASD) are under-recognized and under-treated. Identifying treatment value accounting for health effects on family members (spillovers) could improve the perceived cost-effectiveness of interventions to improve child sleep habits. A prospective cohort study (N = 224) was conducted with registry and postal survey data completed by the primary caregiver. We calculated quality of life outcomes for the child and the primary caregiver associated with treatments to improve sleep in the child based on prior clinical trials. Predicted treatment effects for melatonin and behavioral interventions were similar in magnitude for the child and for the caregiver. Accounting for caregiver spillover effects associated with treatments for the child with ASD increases treatment benefits and improves cost-effectiveness profiles. En ligne : http://dx.doi.org/10.1007/s10803-015-2507-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=270

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