What is Quality of Life like for autistic people

Transcription

1 What is Quality of Life like for autistic people And Is the WHOQoL-BREF fit for use with autistic people? David Mason Helen McConachie, Jacqui Rodgers, Jeremy Parr, Deborah Garland, Colin Wilson

2 What is QoL? an individual s perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. WHOQoL user manual (1998) It is a subjective report given by the individual in relation to their current life situation The WHOQoL-BREF is a 26 item questionnaire with 4 domains

3 Physical QoL pain, medication needs, capacity for work and daily living tasks, sleep, energy, and mobility. Psychological QoL self-esteem, spirituality, mental health, concentration, and bodily appearance Social QoL satisfaction with personal relationships, support from friends, and sex life Environment QoL satisfaction with monetary needs, access to leisure activities, access to health services, transport, safety, and physical environment

4 What have we learned? Positive Predictors Negative Predictors Physical Employed Female Mental health condition SRS total Psychological Social In a relationship Receiving support Female Mental health condition SRS total Older age Mental health condition SRS total Environment Receiving support Female Mental health condition SRS total

5 What have we learned? Overall, QoL is lower for autistic people We have created and tested 9 new QoL items specifically for autistic people The study involved over 400 autistic people We tested the items for clarity and wording, for example: Can you be yourself around friends/people you know well? Do you feel there are barriers when accessing health services? Are you at ease (OK) with Autism as an aspect of your identity? We have since found that the WHOQoL-BREF, WHO Disabilities module, and ASQoL items are a valid measure of QoL for autistic people.

6 What have we learned? Individual interviews: for example Contrasts in reaction to adult diagnosis Female, 50s, I feel as though my life has been wasted because no one could accept the shortfalls I have. Fair enough the era I grew up in was you know, but even now I am very disappointed Female, 50s, Well, this is the best I ve ever been, would you believe? Even though I ve got the diagnosis, because I understand it now, and I don t feel I mean, I am on tablets, but I don t feel they re going to be constantly changing my medication Do you know what I mean? They were looking in the wrong place

7 How will our work improve the quality of life of autistic people and families in Newcastle? Other researchers want to use the new items, e.g. to monitor services in one part of the UK Raise awareness further about QoL being generally lower than for the general population Look at how WHOQoL scores change over time and what can support better QoL A summary of this project is available from The new ASQoL items can be accessed on the same website for people to use in evaluation of services and in research

8 How can you get involved?

9 Adult Autism Spectrum Cohort (ASC-UK) Aims To recruit adults on the autism spectrum, and relatives of adults to two representative national cohorts To understand the lived experience of autism across the lifecourse from: Adults on the autism spectrum Relatives of adults on the autism spectrum Adults who are unable to consent for themselves (relatives join on their behalf) To understand what has gone well, and what has gone less well for autistic people To provide evidence about the support needs of people on the autism spectrum, and relatives

10 Number of people consented by region We are working with a national network of: 66 NHS Trusts / over 100 voluntary organisations By 1 st November 2017: 1902 consents Autistic adults = 1253 Relatives/carers of adults who lack the capacity to consent for themselves = 104 Relatives/carers of autistic adults = 545

11 ASC-UK projects: Quality of Life - finished Uncertain Futures finished Exploring worries about the future for autistic people and their families Adept nearing completion Guided self-help materials for autistic people PAT-A upcoming A personalised anxiety trial for autistic adults

12 Who are we recruiting? We are recruiting: Adults on the autism spectrum of all ages and abilities (confirmed diagnosis not required) Relatives or carers who are entitled to respond on behalf of people on the autism spectrum who cannot give consent themselves (relatives respond for adults who lack legal capacity ) Relatives of adults on the autism spectrum, who are asked to give information about themselves and their own lives

13 Thank you and acknowledgements