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Cited by 58Family and Disability Support ResearchAutism Spectrum Disorder ResearchChild Nutrition and Feeding Issues

Development and psychometric evaluation of a psychosocial quality-of-life questionnaire for individuals with autism and related developmental disorders

Open access
Markowitz, Leslie A, Reyes, Charina, Embacher, Rebecca A, Speer, Leslie L, Roizen, Nancy, Frazier, Thomas W·2016·Autism
DOI 10.1177/1362361315611382PMC PMC6296263
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Abstract

This study investigated the psychometric properties of the Child and Family Quality of Life scale, a measure of psychosocial quality of life in those with autism and related developmental disorders. Parents of 212 children suspected of autism spectrum disorder completed the Child and Family Quality of Life prior to a diagnostic evaluation. Results indicated that the Child and Family Quality of Life measured six unique quality-of-life constructs (child, family/caregiver, financial, external support, partner relationship, and coping), had good reliability across score ranges and exhibited expected patterns of convergent validity. Caregivers of autism spectrum disorder–affected children reported reduced family quality of life prior to the time of diagnosis relative to caregivers of children with other developmental disabilities. The Child and Family Quality of Life is a brief, reliable measure for assessing psychosocial quality of life in families affected by developmental disability. This study is the first to demonstrate impairments in family quality of life early in the developmental course of autism spectrum disorder, prior to formal diagnosis. In addition to traditional child-focused intervention strategies, families with autism spectrum disorder–affected children require early, broad intervention strategies that positively impact the whole family.

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  • The lives of people with ASD diagnoses have improved at least in some high-income countries, with a greater proportion of children using some language, more adults with educational qualifications and less institutionalization.

    “The lives of people with ASD diagnoses have improved at least in some high-income countries, with a greater proportion of children using some language 243 , more adults with educational qualifications and less institutionalization 243”

    From Autism spectrum disorder (2020) · cites this paper as [243]

    The Introduction discusses ASD prevalence and its impact on quality of life, while the Results compare children with ASD against children with other diagnoses; neither provides a historical comparison of outcomes. Searches for institutionalization, adult educational qualifications, and changes in children's language use found no passage addressing the claimed improvements. (LLM, conf=0.77)

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1 of the 59 references couldn’t be matched to a known paper.

Research works printed but not linked: 1

  1. Zimmerman IL, Steiner VG, and Pond E. (2011) Preschool Language Scales-Fifth Edition (PLS-5), San Antonio, TX: Pearson.

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Authors
Markowitz, L. A., Reyes, C., Embacher, R. A., Speer, L. L., Roizen, N., & Frazier, T. W.
Affiliations
  • Cleveland Clinic (US)
  • University Hospitals Cleveland Medical Center (US)
Corresponding author
Frazier, Thomas W
ORCID
Venue
Autism
Publisher
SAGE Publications
Published
2016-07-08
Volume
20
Issue
7
Pages
832-844
ISSN
  • 1362-3613 (ISSN-L)
  • 1461-7005
DOI
10.1177/1362361315611382
PMC
PMC6296263
OpenAlex
W2189807816
Cited by
58
References
59
Citations by year
2026: 2 · 2025: 4 · 2024: 2 · 2023: 4 · 2022: 5 · 2021: 28 · 2020: 5 · 2019: 2 · 2018: 3 · 2017: 2 · 2016: 1
FWCI
2.48
Type
journal article
Language
en
Open access
Licence
journals.sagepub.com/page/policies/text-and-data-mining-license (tdm)
Locations
  • Autism (publishedVersion)
  • PubMed (publishedVersion)
  • Europe PMC (PubMed Central) (acceptedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • Centers for Disease Control and Prevention
  • National Institute of Neurological Disorders and Stroke (U54NS092090)
  • National Center for Research Resources (K12RR023264)
Topics
  • Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
  • Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
  • Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
Keywords
psychosocial quality of life, autism spectrum disorder, developmental disabilities, psychometric properties, family quality of life, caregiver burden, financial stress, external support, coping, couple relationships, early diagnosis
MeSH terms
Autistic Disorder, Child, Developmental Disabilities, Child, Preschool, Female, Humans, Infant, Male, Parents, Psychometrics, Quality of Life, Surveys and Questionnaires, Reproducibility of Results

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