Quality of life in autistic spectrum disorder

Abstract

The limitations of using survival rates and symptom levels as the only outcome variables in clinical practice and research have become evident, particularly with people who have a lifelong and incurable disorder, such as Autistic Spectrum Disorder (ASD). For them, a more important consideration may be whether an intervention has the result of making life more of less 'worth living'. As such, quality of life (QOL) is increasingly seen as a key consideration in evaluating services, the ethical debate regarding health care resource allocation, when testing the effectiveness of new treatments and the development of clinical guidelines for these groups of people. However, factors contributing to QOL for people with ASD are not yet understood, and have to date received little attention by researchers. As such, there is currently no ASD-specific QOL assessment scale described in the literature. This thesis describes the development and validation of such a scale.The research presented here included 15 adults with a diagnosis of Asperger's Syndrome, High-Functioning Autism and High-Functioning ASD without a learning disability associated with Grampian Autistic Society, a family member or key worker for participants, 15 control participants attending a local community centre, and professionals within the field of ASD. The scale development was based on the literature of QOL assessment in other relevant disorders. Face/content validity was investigated through a developed feedback questionnaire given to the participants with ASD, their indentified proxies and the professionals in the field (n=46). There is currently no 'gold standard' for measuring QOL in ASD. Therefore, in order to investigate the concurrent validity of the QOL-ASD, the well-established generic measures WHOQOL-BREF and EQ-5D were used (n=30). To assess the QOL-ASD's test-retest validity, the scale was given again to the participants 7 days after the initial assessment (n=30).Due to the small number of participants included, the results presented here should be interpreted with caution, and could be considered as a pilot of a larger scale study. These results indicate that the QOL-ASD has good face/content validity, good concurrent validity, good test-retest validity and good internal consistency. A significant positive relationship between the QOL-ASD and age was detected.The preliminary results of the research into the QOL-ASD indicate that this scale is valid and reliable as a tool to measure QOL in ASD, and as such some evidence has been found to support its use in clinical practice and research with this group.