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

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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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          EuroQol: the current state of play.

          R. Brooks (1996)
          The EuroQol Group first met in 1987 to test the feasibility of jointly developing a standardised non-disease-specific instrument for describing and valuing health-related quality of life. From the outset the Group has been multi-country, multi-centre, and multi-disciplinary. The EuroQol instrument is intended to complement other forms of quality of life measures, and it has been purposefully developed to generate a cardinal index of health, thus giving it considerable potential for use in economic evaluation. Considerable effort has been invested by the Group in the development and valuation aspects of health status measurement. Earlier work was reported upon in 1990; this paper is a second 'corporate' effort detailing subsequent developments. The concepts underlying the EuroQol framework are explored with particular reference to the generic nature of the instrument. The valuation task is reviewed and some evidence on the methodological requirements for measurement is presented. A number of special issues of considerable interest and concern to the Group are discussed: the modelling of data, the duration of health states and the problems surrounding the state 'dead'. An outline of some of the applications of the EuroQol instrument is presented and a brief commentary on the Group's ongoing programme of work concludes the paper.
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            Practice parameter for the assessment and treatment of children and adolescents with autism spectrum disorder.

            Fred Volkmar, Matthew Siegel, Marc Woodbury-Smith … (2014)
            Autism spectrum disorder is characterized by patterns of delay and deviance in the development of social, communicative, and cognitive skills that arise in the first years of life. Although frequently associated with intellectual disability, this condition is distinctive in its course, impact, and treatment. Autism spectrum disorder has a wide range of syndrome expression and its management presents particular challenges for clinicians. Individuals with an autism spectrum disorder can present for clinical care at any point in development. The multiple developmental and behavioral problems associated with this condition necessitate multidisciplinary care, coordination of services, and advocacy for individuals and their families. Early, sustained intervention and the use of multiple treatment modalities are indicated.
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              Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism

              Hiie Allik, Jan-Olov Larsson, Hans Smedje (2006)
              Background The estimated prevalence rate of Pervasive Developmental Disorders (PDD) in children is 6 per 1.000. Parenting children who are intellectually impaired and have PDDs is known to be linked to the impaired well-being of the parents themselves. However, there is still little available data on health-related quality of life (HRQL) in parents of children with Asperger Syndrome (AS) and High-Functioning Autism (HFA), or other PDD diagnoses in children of normal intelligence. The present study aimed to evaluate aspects of HRQL in parents of school-age children with AS/HFA and the correlates with child behaviour characteristics. Methods The sample consisted of 31 mothers and 30 fathers of 32 children with AS/HFA and 30 mothers and 29 fathers of 32 age and gender matched children with typical development. Parental HRQL was surveyed by the use of the 12 Item Short Form Health Survey (SF-12) which measures physical and mental well-being. The child behaviour characteristics were assessed using the structured questionnaires: The High-Functioning Autism Spectrum Screening Questionnaire (ASSQ) and The Strengths and Difficulties Questionnaire (SDQ). Results The mothers of children with AS/HFA had lower SF-12 scores than the controls, indicating poorer physical health. The mothers of children with AS/HFA also had lower physical SF-12 scores compared to the fathers. In the AS/HFA group, maternal health was related to behaviour problems such as hyperactivity and conduct problems in the child. Conclusion Mothers but not fathers of children with AS/HFA reported impaired HRQL, and there was a relationship between maternal well-being and child behaviour characteristics.
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                Author and article information

                Contributors
                Leontine W. ten Hoopen:
                ORCID: http://orcid.org/0000-0002-3122-7713
                l.tenhoopen@erasmusmc.nl
                Journal
                Journal ID (nlm-ta): J Autism Dev Disord
                Journal ID (iso-abbrev): J Autism Dev Disord
                Title: Journal of Autism and Developmental Disorders
                Publisher: Springer US (New York )
                ISSN (Print): 0162-3257
                ISSN (Electronic): 1573-3432
                Publication date (Electronic): 17 October 2019
                Publication date PMC-release: 17 October 2019
                Publication date (Print): 2020
                Volume: 50
                Issue: 1
                Pages: 263-277
                Affiliations
                [1 ]GRID grid.416135.4, Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC, , Sophia Children’s Hospital, Rotterdam, ; P.O. Box 2040, 3000 CA Rotterdam, The Netherlands
                [2 ]GRID grid.6906.9, ISNI 0000000092621349, Erasmus School of Health Policy & Management, , Erasmus University Rotterdam, ; P.O. Box 1738, 3000 DR Rotterdam, The Netherlands
                [3 ]Yulius Mental Health, P.O. Box 753, 3300 AT Dordrecht, The Netherlands
                Author information
                http://orcid.org/0000-0002-3122-7713
                Article
                Publisher ID: 4249
                DOI: 10.1007/s10803-019-04249-w
                PMC ID: 6946729
                PubMed ID: 31625009
                SO-VID: a7e1765b-d6a1-4899-bfa3-bb1fbcf8ef4d
                Copyright © © The Author(s) 2019
                License:

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                History
                Funding
                Funded by: Sophia Foundation for Scientific Research
                Award ID: 958
                Award Recipient :
                Categories
                Subject: Original Paper
                Custom metadata
                issue-copyright-statement © Springer Science+Business Media, LLC, part of Springer Nature 2020

                ScienceOpen disciplines: Neurology
                Keywords: autism spectrum disorder (asd),caregiver burden,carerqol,children,euroqol five-dimensional (eq-5d) questionnaire,health-related quality of life
                Data availability:
                ScienceOpen disciplines: Neurology
                Keywords: autism spectrum disorder (asd), caregiver burden, carerqol, children, euroqol five-dimensional (eq-5d) questionnaire, health-related quality of life

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