Autism Quality of Life Measure
The autism and quality of life study (2016-7) was funded by Research Autism and the Shirley Foundation, and led by Professor Helen McConachie. The study led to the development of autism specific items that we call ASQoL.
The ASQoL module has been designed as an ‘add-on’ set of 9 items, to be used alongside the WHO quality of life measure, WHOQoL-BREF, and the WHO Disabilities module. The WHOQoL-BREF has 26 items, two global items and 24 which measure physical, psychological, social and environment quality of life. There are over 60 officially recognised translations available. The WHO Disabilities module has 13 items, one global and 12 which measure autonomy, discrimination and inclusion.
Use of the WHOQoL-BREF is by licence from the WHO (https://www.who.int/tools/whoqol/whoqol-bref) and contacting Dr Ruediger Krech (krechr@who.int). The Disabilities module manual is available at various sites on the internet (e.g. ufrgs.br/qualidep/images/DISQOL/WHOQOL-DIS_Manual.pdf).
The ASQoL module includes one global item and eight others from which a factor score can be calculated. The autism and quality of life study involved extensive consultation with autistic people about what might be particularly important in their experiences contributing to quality of life or missed out from the existing measures.
To access the ASQoL items and instructions, please click here:
Autism quality of life measure
The ASQoL, whether in English or translation, is a copyrighted document that may not be modified. Paper versions may be downloaded and subsequently photocopied without charge by individuals or non-profit organisations provided they are not making any charge to individuals. Please contact measures@newcastle.ac.uk with any queries or for permission to translate the measure.
The development and initial evaluation of the ASQoL is reported in the following journal paper:
Future analysis of the ASQoL
We welcome contact with researchers and clinicians planning to use the combined WHOQoL measures including ASQoL. We have provided an Excel format for scoring all three measures (WHOQoL-BREF, WHO Disabilities module, and ASQoL) accessible here, with instructions:
The Excel format includes fields for some anonymised characterisation variables (such as age, gender etc) for which a printable pdf is accessible here:
ASQoL Additional Data on Characteristics
We hope in future to contact you about the possibilities of data-sharing. If you use the Excel format then data-sharing to test further the validity of the combined QoL measures will be facilitated. Please be clear you are under no obligation to share data with the Newcastle autism research team. However, if your research study Ethics application and participant consent forms mention future anonymised data-sharing, this will future-proof joint analysis and publication.