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

Background:

A focus on patient-centred outcomes, such as quality of life (QoL), has become increasingly important to intervention research. Simultaneously, there has been increasing attention to user involvement in research design. Families of children with ASD have an important contribution to make in defining the metrics by which successful interventions are judged.

The Pre-school Autism Communication Trial (PACT) was a randomised controlled trial of a parent-mediated communication-focussed intervention for pre-schoolers with autism and their parents (Green et al., 2010), with an endpoint (1-year) and 5-year follow-up.

Objectives:

1) To consult with families to develop a parent-generated measure, the Autism Family Experience Questionnaire (AFEQ), which would reflect family experience of autism, quality of life, and family priorities for specific areas that might be changed by an effective intervention

2) Within the PACT trial, to check the external validity of the child development aspects of the AFEQ by testing for a strong association with the parent rated Vineland Adaptive Behavior Scales (VABS; Sparrow et al 2006);

3) To examine a treatment effect in the AFEQ, with the hypothesis that, compared to controls, the PACT intervention group would show relative improvements in the total AFEQ score and each of the subscale scores, at endpoint (1-year) and 5-year follow-up

Methods:

The AFEQ was developed from focus groups and a national web-based consultation which asked families of young children with autism to nominate key markers of an effective pre-school autism treatment. The AFEQ was then administered at baseline and follow-up to the 152 families involved in the PACT trial.

Results:

1) The AFEQ was developed from focus-group themes and consultation feedback. It contains 56 items and covers three domains: 1) experience of parenting their child; 2) quality of family life; 3) child development, social functioning and behaviour.

2) There were strong correlations between the AFEQ child development subscore and the VABS total score: baseline r = -0.46 (p<0.001, n=143); endpoint r = -0.57 (p<0.001, n=134; AFEQ low score = better outcome, VABS high score = better outcome).

3) We compared AFEQ total and subtotal scores between intervention and control groups using linear regression (analysis of covariance) including baseline measures of the outcome as a covariate. Summary statistics and treatment effect estimates are presented in the table. On the AFEQ total score, there was a statistically significant improvement of PACT over controls. Treatment effects on the AFEQ subscales were all non-significant, although showing a trend towards a more positive outcome for the intervention group. Findings from the 5-year follow-up data will also be presented.

Conclusions:

The AFEQ represents a viable, ecologically valid, parent-nominated measure of prioritised outcomes for a pre-school autism intervention. It shows association in the expected way with another parent rated measure, the VABS. It also shows evidence of sensitivity to change over time: a treatment effect in response to a parent-mediated intervention for autism. The AFEQ has the potential to enhance understanding of the external validity of early psycho-social interventions for children with autism.