Measuring quality of life in adults on the autism spectrum
Research type
Research Study
Full title
Measuring quality of life in adults on the autism spectrum: making a questionnaire fit for purpose
IRAS ID
209554
Contact name
Jeremy Parr
Contact email
Sponsor organisation
Northumberland Tyne and Wear NHS Foundation Trust
Duration of Study in the UK
0 years, 10 months, 29 days
Research summary
The present study aims to find out how to measure Quality of Life (QoL) appropriately in the case of adults on the autism spectrum. The World Health Organisation (WHO) have designed and validated several measures of QoL, including a 26 item WHOQoL-BREF (‘brief’); and a 39 item WHOQoL-DIS (13 disability specific questions as an add-on module to the WHOQoL-BREF). These measures have been shown to have good validity cross-culturally in measuring QoL. The WHOQoL-BREF has been used with adults on the autism spectrum but the findings are mixed and no qualitative exploration has been undertaken.
The present study aims to investigate the suitability of the WHOQoL-BREF for use with adults on the autism spectrum. This has been started by analysing pre-existing WHOQoL-BREF data from respondents in the adult autism cohort-UK (ASC-UK) cohort, to identify factors or questions that are problematic in measuring QoL for adults on the autism spectrum.
The first part of the research for which an ethical opinion is sought will involve interviews with members of ASC-UK who consent to participate. Their views on the suitability of the questions, and missing issues, will be gathered; the autism community may have different views about QoL than those of people with other conditions. This may lead to the generation of new questions in an add-on module, specific to autism spectrum conditions (ASC) for which further feedback will be gathered through a Delphi process.
The final part of the study will test the resulting questionnaire devised in the previous stage. This may be the WHOQoL-DIS with or without new add-on questions. Additional questionnaires will be sent out (i.e. about depression and the individual’s environment) with it to allow for a thorough analysis of its suitability as a QoL measure for adults on the autism spectrum.REC name
South Central - Oxford C Research Ethics Committee
REC reference
16/SC/0598
Date of REC Opinion
6 Oct 2016
REC opinion
Further Information Favourable Opinion