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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.
Highlights
There is a notable paucity of parent-nominated measures designed to assess intervention outcomes for children with neuro-developmental disabilities, such as autism spectrum disorder (ASD), and their families (McConachie et al 2015; Morris et al 2014, 2015)
In this paper we describe the development of a parent-nominated measure of family experience, quality of life and prioritised outcomes for early intervention designed to address this measurement gap
The trial was registered on International Standard Randomised Controlled Trial, number ISRCTN58133827, and the protocol is available at http:// research.bmh.manchester.ac.uk/pact
Summary
There is a notable paucity of parent-nominated measures designed to assess intervention outcomes for children with neuro-developmental disabilities, such as autism spectrum disorder (ASD), and their families (McConachie et al 2015; Morris et al 2014, 2015). The measurement of patient- and parent/carer-centred outcomes has become an integral part of the evaluation of Journal of Autism and Developmental Disorders (2018) 48:1052–1062 treatment effectiveness and cost-effectiveness in the UK and internationally (see, for example, the Promis System of the US National Institutes of Health 2017, and the NHS Outcomes Framework of the UK Department of Health 2017) This gives the clear mandate that patients and their families/ carers should be central to the process of prioritising which outcomes matter most within any particular health domain and determining the criteria by which interventions are judged (Marshall et al 2005; Morris et al 2015; National Institute for Health and Care Excellence 2013; Tait and Lester 2005). The improvement in child dyadic communicative behaviours seen in the intervention group at trial endpoint was sustained into follow-up, but standardised measures of language development continued not to show group differences
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