Review highlights need for specific models to measure quality of life for people with learning disabilities

Analysis showed significant lack of robust evidence on impact or cost effectiveness

A key indicator of service outcomes for people with learning disabilities is quality of life. However, there continues to be debate in the literature about the best way to define this and the best way to measure it. Most of the major service providers in the UK for example have some form of routine outcome measurement process as part of a quality system, although these may vary considerably in approach and the tools they use.

The authors of this systematic review in Australia therefore set out to look at available quality of life measures for people with learning disabilities to see if it was possible to identify psychometrically sound measures that could be recommended for use in service evaluation.

The researchers systematically searched the disability literature between 1980 and 2008 was conducted in order to identify quality of life tools for use within an Australian context.

They found 24 instruments which they evaluated against a set of psychometric and measurement criteria. They found six of the instruments which they claim are psychometrically sound. They found no instruments that specifically assessed the quality of life of people with learning disability who have behaviours that services describe  as challenging.

They suggest that most of the instruments they found assessed quality of life from a subjective perspective and tend to use questionnaire formats. They also point out that most only measure some, nor all of the eight theoretically accepted domains of quality of life (emotional well-being, interpersonal relationships, material well-being, personal development, physical well-being, self-determination, social inclusion and rights).

They conclude from the review that the utility of the quality of life concept is still emerging in the field of learning disabilities. The literature on the development and application of measures is still quite small.

They call for research to develop one or more detailed and empirically based quality of life models and in particular for work to include approaches which are appropriate to people with learning disabilities with behaviours described as challenging.

A systematic review of quality of life measures for people with intellectual disabilities and challenging behaviours, Townsend-White C et al., in Journal of Intellectual Disability Research, 56, 3, 270-284

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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