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Robert Schalock defined quality of life as a concept that reflects the conditions of life desired by a person in connection with eight basic needs: emotional well being, relationships, material welfare, personal development, physical well being, self determination, social inclusion and rights.

Validated and reliable tools to measure quality of life outcomes in persons with ASD are in short supply. The difficulties in assessing these outcomes from a subjective perspective make it necessary to find valid objective quality of life indicators. Mentaur is developing a U.K. specific instrument, in collaboration with the University of Burgos and Autism Burgos, Spain, who have been working in this area.

Objectives

• To design an instrument made up of an objective guide of indicators to assess quality of life outcomes in persons with ASD
  
• To adjust and validate this tool to make it U.K. specific.
• To provide this tool free of cost to all professionals and organisations who want to introduce quality of life based models, in advancing and enriching the quality of support for persons with ASD.

Methods

The original Guide of Indicators was translated from Spanish to English and re-translated to Spanish to ensure accuracy. Certain cultural contextual changes were made.

A qualitative research method, the Delphi technique -where a group of experts, co-ordinated by the chief researcher and through the successive sending of data, reach an agreed consensus- is being used to validate the Guide of Indicators. A panel of experts has been selected across the UK from a wide range of fields within the ASD and a series of consultations are being carried out via email over a period of six months.

Results

The instrument  and application manual being developed comprise of indicators which drive outcomes and are grouped into 6 areas:

Quality in reference to the individual and needs assessment

• Developing and following up on personal development plans.
• Staff training.
• Structure and organisation of service.
• Human resources, materials and spaces.
  Contact with the community and social empowerment.

Each indicator is made up of four evidences or tests which help evaluate and quantify the indicator.
Preliminary results indicate that while there is concurrence with many of the indicators in several areas there is divergence surrounding issues such as information provided to users, extent of family involvement, level of choice, staff training and advocacy.

Conclusions

Final conclusions will be available on completion of the project in March 2012. We believe there will be unique features to this tool which will surmount, for example, the serious communication difficulties which persons with ASD often have, and will allow a comprehensive and objective overview on quality of life outcomes.