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Randomized Controlled Trial
. 2018 Apr;48(4):1052-1062.
doi: 10.1007/s10803-017-3350-7.

The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention

Kathy Leadbitter  1   2 , Catherine Aldred  3 , Helen McConachie  4 , Ann Le Couteur  4   5 , Dharmi Kapadia  3 , Tony Charman  6 , Wendy Macdonald  7 , Erica Salomone  6   8 , Richard Emsley  3 , Jonathan Green  3   7   9 ; PACT Consortium
Collaborators, Affiliations
Randomized Controlled Trial

The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention

Kathy Leadbitter et al. J Autism Dev Disord. 2018 Apr.

Abstract

There is a lack of measures that reflect the intervention priorities of parents of children with autism spectrum disorder (ASD) and that assess the impact of interventions on family experience and quality of life. The Autism Family Experience Questionnaire (AFEQ) was developed through focus groups and online consultation with parents, and reflected parental priorities. It was then administered to the parents of children enrolled in the Pre-school Autism Communication Trial and its 6-year follow-up study. The AFEQ showed good convergent validity with well-established measures of child adaptive functioning, parental mental health and parental wellbeing. It was sensitive to change in response to a parent-mediated intervention for young children with autism, showing treatment effect at treatment endpoint which increased at six-year follow-up.

Keywords: Autism Spectrum Disorder; Family experience; Intervention; Parent; Quality of Life; Wellbeing.

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Conflict of interest statement

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

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