Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life

Leontine W. ten Hoopen; Pieter F. A. de Nijs; Jorieke Duvekot; Kirstin Greaves-Lord; Manon H. J. Hillegers; Werner B. F. Brouwer; Leona Hakkaart-van Roijen

doi:10.1007/s10803-019-04249-w

Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life

Leontine W. ten Hoopen^*, Pieter F. A. de Nijs, Jorieke Duvekot, Kirstin Greaves-Lord, Manon H. J. Hillegers, Werner B. F. Brouwer, Leona Hakkaart-van Roijen

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

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Abstract

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.

Original language	English
Pages (from-to)	263-277
Number of pages	15
Journal	Journal of Autism and Developmental Disorders
Volume	50
Issue number	1
DOIs	https://doi.org/10.1007/s10803-019-04249-w
Publication status	Published - Jan-2020
Externally published	Yes

Keywords

Autism spectrum disorder (ASD)
Caregiver burden
CarerQol
Children
EuroQol five-dimensional (EQ-5D) questionnaire
Health-related quality of life
DEFICIT HYPERACTIVITY DISORDER
PARENTS
EQ-5D
EUROQOL
SELF
RESPONSIVENESS
ADOLESCENTS
VALIDITY
ANXIETY
STRESS

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ten Hoopen, L. W., de Nijs, P. F. A., Duvekot, J., Greaves-Lord, K., Hillegers, M. H. J., Brouwer, W. B. F., & Hakkaart-van Roijen, L. (2020). Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life. Journal of Autism and Developmental Disorders, 50(1), 263-277. https://doi.org/10.1007/s10803-019-04249-w

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abstract = "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.",

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author = "{ten Hoopen}, {Leontine W.} and {de Nijs}, {Pieter F. A.} and Jorieke Duvekot and Kirstin Greaves-Lord and Hillegers, {Manon H. J.} and Brouwer, {Werner B. F.} and {Hakkaart-van Roijen}, Leona",

year = "2020",

month = jan,

doi = "10.1007/s10803-019-04249-w",

language = "English",

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AU - ten Hoopen, Leontine W.

AU - de Nijs, Pieter F. A.

AU - Duvekot, Jorieke

AU - Greaves-Lord, Kirstin

AU - Hillegers, Manon H. J.

AU - Brouwer, Werner B. F.

AU - Hakkaart-van Roijen, Leona

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N2 - 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.

AB - 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.

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KW - Caregiver burden

KW - CarerQol

KW - Children

KW - EuroQol five-dimensional (EQ-5D) questionnaire

KW - Health-related quality of life

KW - DEFICIT HYPERACTIVITY DISORDER

KW - PARENTS

KW - EQ-5D

KW - EUROQOL

KW - SELF

KW - RESPONSIVENESS

KW - ADOLESCENTS

KW - VALIDITY

KW - ANXIETY

KW - STRESS

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DO - 10.1007/s10803-019-04249-w

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SN - 0162-3257

VL - 50

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JO - Journal of Autism and Developmental Disorders

JF - Journal of Autism and Developmental Disorders

IS - 1

ER -

Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life

Abstract

Keywords

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