Is the Whoqol-Bref Fit for Purpose in Measuring Quality of Life in Autistic Adults?

Background: There is urgent need for health-related research with autistic adults to better understand their needs, lived experience and views. Furthermore, there is a lack of specifically validated outcome measures, in particular for measuring quality of life (QoL). Current research findings about QoL are inconsistent regarding which domains of QoL are most affected in autistic adults, and how QoL may vary with age is unclear.

Objectives: To examine the appropriateness of measuring quality of life of autistic adults with the World Health Organisation brief quality of life scale (WHOQoL-BREF).

To explore particular issues affecting quality of life in older adults on the autism spectrum.

Methods: Participants are members of the Adult Autism Spectrum Cohort (ASC-UK) involved in a longitudinal study of life experiences. Each adult (or proxy where the adult lacks capacity to consent for themselves) completes a baseline questionnaire, the Social Responsiveness Scale, and the WHOQoL-BREF. An exploratory factor analysis was conducted (n = 370) to examine the WHOQoL-BREF’s structural validity for autistic adults, i.e. whether the same four subscales (social, psychological, physical, environment) emerge. Experiences and quality of life of older adults (61+ years) and younger adults were compared.

Qualitative information was obtained about determinants of individuals’ quality of life, about the importance and interpretation of the items of the questionnaire, and about the suitability of the additional WHO Disabilities module (Power et al 2010) through in-depth interviews, focus groups and cognitive interviewing. Further items relevant to the experience of autistic adults were tested for importance and clarity in a Delphi survey, and all the items tested in a large validation study with the ASC-UK cohort.

Results: A five-factor model emerged showing considerable overlap with the WHO subscales (the physical subscale separating in two). Moderate to good internal consistency was found for the four subscales. In focus groups, some items were found difficult to interpret or suggested as relatively unimportant. Other items were discussed with a different slant, such as ‘How satisfied are you with your capacity for work?’ where participants put emphasis on whether employers understood autism or had stereotyped views.

The individual interviews elicited themes from older adults which often reflected health issues, their own or of other members of the family. Some people had gained a positive outlook through obtaining a diagnosis later in life. Older and younger autistic adults on average reported similar QoL, except on the social subscale where older adults reported poorer QoL.

Conclusions: The WHOQoL-BREF appears largely appropriate for measuring quality of life in autistic adults. However, additional Disabilities items give a fuller picture of specific experiences related to autonomy, control and discrimination, as well as newly derived autism-specific items including other people’s lack of understanding of autism, financial insecurity and the specific support structures needed by individuals. For older adults, health issues loom large, either for themselves or requiring them to take on a carer role in the family. As autistic adults, they may have great difficulty in asking for and finding appropriate sources of support and health services.