Finding Out What Matters:

Validity of Quality of Life in Children with ASD

Laura Tavernor, Evelyn Barron, Dr Jacqui Rodgers and
Prof. Helen McConachie.

 

The Study
There have been few studies which have measured quality of life (QoL) of children and young people with Autism Spectrum Disorder (ASD). Yet this is an important outcome, relevant to longitudinal and treatment studies.  The ‘Finding out what matters’ study aimed to evaluate the validity of pre-existing QoL questionnaires for use with children with ASD aged 8 to 12 years.  A systematic literature review (1990-2011) identified the PedsQL and Kidscreen as robust measures which have been used with children with a range of neurodevelopmental disorders.  

The research team approached 60 families through Daslne and recruited 11 families to the research study.  These were families with a child who has a diagnosis of ASD, attends mainstream school, and is aged between 8 and 12 years.  The 21 participants (10 young people and 11 parents) were asked to complete two quality of life questionnaires, the PedsQL and the Kidscreen.  Semi-structured interviews were conducted with 10 parents and 4 children (67%) to explore their experience of completing the QoL questionnaires.

Our Findings
The questionnaire scores show that young people with ASD, and their parents, report lower child QoL compared to typically developing children.  Framework analysis of the interview data highlighted six key themes affecting the validity of the QoL questionnaires when administered with an ASD sample.  For example, parents and children suggested that experiences of anxiety and access to special interests should be included in questionnaire items when measuring QoL of children with ASD. 

Next Steps
Active involvement of young people and their families is critical for the development of a theoretical framework for QoL within ASD, and any future development of an ASD specific measure.

Thank you!
We would like to say a huge thank you to all the families who participated in the ‘Finding out what matters’ study.  If you have questions about the study please do contact Professor Helen McConachie: Helen.mcconachie@ncl.ac.uk.