Project Area: Ensuring a Quality of Life Measure for adults on the autism spectrum is appropriate and valid.
Lead Researcher: Professor Helen McConachie
Description: With the input of people in the autism community, the team explored the international standard World Health Organisation Quality of Life tool, WHOQOL-BREF, and additional Disabilities module, with permission from the WHOQOL group in Geneva. They developed additional items (ASQoL) to address some autism specific issues concerning quality of life.
Status: Completed
Impact: The validation study of the WHOQOL-BREF has the potential to ensure that outcomes of services aimed at adults on the autism spectrum are measured effectively.
Download: Quality of Life Executive Summary
Our first study used statistical analysis of some data to look at what factors predict Quality of Life for autistic people. We wanted to know if the demographic information about autistic people (for example age, gender, whether you live alone, whether you have a job etc.) tells us anything about Quality of Life.
We found there are some factors that are related to Quality of Life:
These findings are important because they provide information to services or those providing interventions about what might make a difference in improving the Quality of Life of autistic people. If we know that people who receive support have better Quality of Life, we can highlight this, so that people trying to improve services know what to focus on. Similarly, the findings about gender show us that more work needs to be done to enhance the Quality of Life of autistic women.
Our next question was about whether the WHOQol-BREF accurately measures Quality of Life when used with autistic people. It was important to ask autistic people about the questions used in the questionnaire, and we also included another WHO questionnaire – the Disabilities module. We thought these extra questions might be relevant and useful because they ask about discrimination, autonomy (making your own choices), and inclusion.
We carried out four discussion groups with autistic people in the North East of England. We asked them to order the questions from most important to least important, as a way to get people talking.
We found out three main problems with the Quality of Life questions:
These consultations were vital to the research for two main reasons. Firstly, it allowed us to hear from autistic people what issues they may have with the questions. This has allowed us to explain to others (i.e. researchers who might use the WHOQoL-BREF) how some of the items mean different things to autistic people and this should be considered when interpreting studies using the questionnaire. Secondly, it has allowed us to develop an additional set of questions (called the ASQoL) to ask autistic people about their Quality of Life.
Autistic people said:
Sensory issues question:
Autistic identity question:
Validation means working out if a set of questions measures what it claims to measure. So we wanted to know if the WHOQoL-BREF, the Disabilities module, and the additional questions we created (ASQoL) when added together, really measure Quality of Life for autistic people. To do this, we got the views of autistic people (via interviews and surveys) about the additional questions. We wanted to know if the questions were understandable (did autistic people interpret the question as it was intended), if they were important, and if they were clearly worded. After that, we sent out a number of questionnaires to a large number of autistic people and used some statistical analyses to tell us how good the WHOQoL-BREF, Disabilities module, and ASQoL questions are.
• We asked autistic people to rate how important and how clear our additional questions (ASQoL) were. We collected over 400 responses and used these data to work out, overall, how important and clear each question was. Additionally, people could also leave comments to help us improve the questions.
• We asked 15 autistic people to take part in interviews. The type of interview was designed to find out what people think about a question – e.g. does it mean the same thing to the people using it as it does to the person who wrote it? We then used the participants’ responses from these interviews to help us improve the additional questions.
• We decided to remove two questions (one was about stereotyping and the other was about helping others) as the data and comments told us that the questions were not easy to understand.
• We sent out the WHOQoL-BREF, the WHOQoL-DIS, and the ASQoL questions to a large sample of autistic people. We also included questionnaires about social support, anxiety and depression, environmental barriers; and a different Quality of Life questionnaire. In total 309 people took part in the study.
• The results showed that the WHOQoL-BREF domains are good at measuring what they claim to. For example, social support was strongly related to the Social Quality of Life domain and depression was strongly related to the Psychological domain.
• The WHOQoL-DIS questions are OK to use with autistic people. However, our early analysis shows that some questions may be interpreted differently from how they are intended.
• The ASQoL questions measure additional important aspects of QoL for autistic people. The questions are about friendships, having supportive people to help with issues, and barriers to accessing health services or work.
• The ASQoL includes an ‘overall’ question about QoL and it is about autistic identity. This question was difficult to find the right wording for but overall it was rated as being very important for QoL by autistic people.
Quality of Life for autistic people:
The WHOQoL-BREF:
The WHOQoL-Disabilities module and ASQoL questions: