Caring for Children with an Autism Spectrum Disorder: Factors Associating with Health- and Care-Related Quality of Life of the Caregivers / Leontine W. TEN HOOPEN in Journal of Autism and Developmental Disorders, 52-11 (November 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-11 (November 2022) . - p.4665-4678 Titre : Caring for Children with an Autism Spectrum Disorder: Factors Associating with Health- and Care-Related Quality of Life of the Caregivers Type de document : Texte imprimé et/ou numérique Auteurs : Leontine W. TEN HOOPEN, Auteur ; Pieter F. A. DE NIJS, Auteur ; Jorieke DUVEKOT, Auteur ; Kirstin GREAVES-LORD, Auteur ; Manon H. J. HILLEGERS, Auteur ; Werner B. F. BROUWER, Auteur ; Leona HAKKAART-VAN ROIJEN, Auteur Article en page(s) : p.4665-4678 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder  Caregivers  Child  Humans  Parenting  Quality of Life  Surveys and Questionnaires  Autism spectrum disorder (ASD)  Caregiver  CarerQol  Children  Eq-5d  Health-related quality of life  research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : This study investigated the association of child, caregiver, and caregiving measurements with the quality of life (QoL) in 81 caregivers (mostly parents) of clinically referred children with autism spectrum disorder (ASD). We used the EuroQol five-dimensional (EQ-5D) questionnaire and the care-related QoL questionnaire (CarerQol) to respectively assess health-related QoL and care-related QoL. Health-related QoL was associated with the caregiver's internalizing problems and adaptive coping, explaining 38% of the variance. Parenting stress and adaptive coping were associated with the care-related QoL and explained 60% of the variance. Child variables were not associated with the caregiver's health- and care-related QoL if caregiver and caregiving variables were taken into account. Findings indicate the importance of the caregiver's mental health, coping, and parenting stress in caring for children with ASD. En ligne : http://dx.doi.org/10.1007/s10803-021-05336-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=489 [article] Caring for Children with an Autism Spectrum Disorder: Factors Associating with Health- and Care-Related Quality of Life of the Caregivers [Texte imprimé et/ou numérique] / Leontine W. TEN HOOPEN, Auteur ; Pieter F. A. DE NIJS, Auteur ; Jorieke DUVEKOT, Auteur ; Kirstin GREAVES-LORD, Auteur ; Manon H. J. HILLEGERS, Auteur ; Werner B. F. BROUWER, Auteur ; Leona HAKKAART-VAN ROIJEN, Auteur . - p.4665-4678. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-11 (November 2022) . - p.4665-4678 Mots-clés : Autism Spectrum Disorder  Caregivers  Child  Humans  Parenting  Quality of Life  Surveys and Questionnaires  Autism spectrum disorder (ASD)  Caregiver  CarerQol  Children  Eq-5d  Health-related quality of life  research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : This study investigated the association of child, caregiver, and caregiving measurements with the quality of life (QoL) in 81 caregivers (mostly parents) of clinically referred children with autism spectrum disorder (ASD). We used the EuroQol five-dimensional (EQ-5D) questionnaire and the care-related QoL questionnaire (CarerQol) to respectively assess health-related QoL and care-related QoL. Health-related QoL was associated with the caregiver's internalizing problems and adaptive coping, explaining 38% of the variance. Parenting stress and adaptive coping were associated with the care-related QoL and explained 60% of the variance. Child variables were not associated with the caregiver's health- and care-related QoL if caregiver and caregiving variables were taken into account. Findings indicate the importance of the caregiver's mental health, coping, and parenting stress in caring for children with ASD. En ligne : http://dx.doi.org/10.1007/s10803-021-05336-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=489

Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life / Leontine W. TEN HOOPEN in Journal of Autism and Developmental Disorders, 50-1 (January 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-1 (January 2020) . - p.263-277 Titre : Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life Type de document : Texte imprimé et/ou numérique Auteurs : Leontine W. TEN HOOPEN, Auteur ; Pieter F. A. DE NIJS, Auteur ; Jorieke DUVEKOT, Auteur ; Kirstin GREAVES-LORD, Auteur ; Manon H. J. HILLEGERS, Auteur ; Werner B. F. BROUWER, Auteur ; Leona HAKKAART-VAN ROIJEN, Auteur Article en page(s) : p.263-277 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder (ASD)  Caregiver burden  CarerQol  Children  EuroQol five-dimensional (EQ-5D) questionnaire  Health-related quality of life Index. décimale : PER Périodiques Résumé : This study investigated health-related QoL (HRQoL) and care-related quality of life (CarerQol) in clinically referred children with an autism spectrum disorder (ASD), and their primary and secondary caregivers. The EuroQol five-dimensional (EQ-5D) and the CarerQol questionnaires were used to respectively measure health-related QoL and care-related QoL. Primary caregivers reported pain/discomfort (42%) and anxiety/depression (40%). In caring, they mostly experienced problems in the relationship with the child (84%), and in combining care with daily activities (51%). Children with ASD had a relevantly lower QoL. Despite negative effects, almost all caregivers (96%) derived fulfillment from caring for their affected children. HRQoL and CarerQol reports of primary caregivers and children were correlated, both providing useful information to ASD measurement and treatment. En ligne : http://dx.doi.org/10.1007/s10803-019-04249-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=414 [article] Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life [Texte imprimé et/ou numérique] / Leontine W. TEN HOOPEN, Auteur ; Pieter F. A. DE NIJS, Auteur ; Jorieke DUVEKOT, Auteur ; Kirstin GREAVES-LORD, Auteur ; Manon H. J. HILLEGERS, Auteur ; Werner B. F. BROUWER, Auteur ; Leona HAKKAART-VAN ROIJEN, Auteur . - p.263-277. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-1 (January 2020) . - p.263-277 Mots-clés : Autism spectrum disorder (ASD)  Caregiver burden  CarerQol  Children  EuroQol five-dimensional (EQ-5D) questionnaire  Health-related quality of life Index. décimale : PER Périodiques Résumé : This study investigated health-related QoL (HRQoL) and care-related quality of life (CarerQol) in clinically referred children with an autism spectrum disorder (ASD), and their primary and secondary caregivers. The EuroQol five-dimensional (EQ-5D) and the CarerQol questionnaires were used to respectively measure health-related QoL and care-related QoL. Primary caregivers reported pain/discomfort (42%) and anxiety/depression (40%). In caring, they mostly experienced problems in the relationship with the child (84%), and in combining care with daily activities (51%). Children with ASD had a relevantly lower QoL. Despite negative effects, almost all caregivers (96%) derived fulfillment from caring for their affected children. HRQoL and CarerQol reports of primary caregivers and children were correlated, both providing useful information to ASD measurement and treatment. En ligne : http://dx.doi.org/10.1007/s10803-019-04249-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=414

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

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

---

1 (1 - 4 / 4)