WHOQOL-BREF and Autistic Adults
Measurement of Quality of Life allows researchers and policy-makers to look at some of the broader factors that influence health and wellbeing. The World Health Organisation’s Quality of Life measure (WHOQoL-BREF) is a self-reported and subjective measure, which is an individual’s point of view or satisfaction, covering a range of factors based on personal aims, beliefs and expectations. But so far no one has looked at how good this measure is for use with autistic people.
Autistic people who join the Autism Adult Autism Spectrum Cohort - UK study complete the WHOQoL-BREF. This cohort study currently has around 1200 autistic participants (research.ncl.ac.uk/adultautismspectrum). We asked members of ASC-UK (ages 18-88) to take part in the Quality of Life study, including around 20% who are either not able to complete questionnaires themselves or who needed help (from a friend, relative, or support worker) to answer the questions. In total 424 people took part and have been sent a 4-page summary of findings.
We first consulted widely to check whether the 26 item WHOQoL-BREF was relevant for use with the autism community, and accurately measures Quality of Life for autistic people. We conducted 4 focus groups to look at the items and also a further 13 items of the WHO Disabilities module. The discussion themes suggested the need for additional ‘autism-specific’ items to cover issues of importance such as barriers to accessing services, financial instability, sensory issues and autistic identity. We explored the clarity and importance of these with autistic people through interviews and a Delphi survey, and also with autism researchers, refining the 9 ASQoL items on the way along. Then 309 people filled in a set of questionnaires so that we could explore the validity and reliability of the whole package of 48 QoL items. We have established that the structure works acceptably with autistic people and that the validity and reliability are good enough for the measure to be used in studies as an accurate outcome. We found that important predictors of lower QoL in autistic people are having a mental health condition (such as depression or anxiety) and having more self-reported autism characteristics. Being in employment, being in a relationship and receiving support (i.e. with handling money or at work or in the home) predict better QoL.
We are submitting our research findings to be published (around 5 papers). We will be sharing our new items with service providers and practitioners to use when measuring the QoL of autistic people. We will continue to highlight the importance of improving QoL for autistic people by telling people about our findings through social media. A summary of our research findings will be put up on the Adult Autism Spectrum Cohort-UK website.
We would like to thank Research Autism for support and funding the research assistant and materials for this study.
We would also like to thank Autistica for funding the Adult Autism Spectrum Cohort-UK project from which we recruited our participants. Finally, we would like to thank all of the people who took part in this research study.
Who was involved in this study?
The Principal Investigator for this study was Prof Helen McConachie
Also involved in the project from the Neurodevelopment and Disability team are:
- Clinical Senior Lecturer, Newcastle University
- Honorary Consultant Paediatrician, Newcastle upon Tyne Hospitals NHS Foundation Trust
- Senior Lecturer in Clinical Psychology
- Doctorate in Clinical Psychology
- Research Assistant
- ASD Family Support Manager
- Advisory Researcher
Call Helen McConachie: 0191 282 1396
WHOQOL-BREF and Autistic Adults sits within the 'Lifecourse Studies of neurodevelopmental disorders' and 'Engaging young people and families' research themes.
If you are looking for other research linked to ASD, please view the relevant conditions and topics page for a full list of studies.