Quality of life measures missing in studies of outcomes of pharmacological interventions in autism spectrum disorder

Question-3

Quality of life is becoming a common outcome in the reporting of trials. The authors of this literature review were interested to look systematically at the use of quality life as an outcome in pharmacological research on Autism Spectrum Disorders. Currently, the most frequently used outcome measures in such trials are measures of changes in behavioural symptoms or impacts on impairments in functioning.

What they did was to review international literature using a series of questions

  • Did pharmacological interventions on autism spectrum disorder include quality of life as an outcome measure?
  • If yes, how and to what extent?
  • What consideration was given to generic (whole-person) quality of life?

What they found was that there was an almost complete lack of studies including quality of life as an outcome measure. Where there were such studies, these showed significant conceptual and methodological limits.

They also found there were insufficient studies to allow comparisons of effectiveness between classes of drugs or single compounds with respect to quality of life.

They conclude that whilst quality of life as a concept has become increasingly valuable in psychiatric literature more generally, there is as yet little evidence that it is being explored r applied in the field of pharmacological interventions in autism spectrum disorder.
They suggest that in relation to measures of quality of life in autism spectrum disorder research

“considerable research efforts are needed to make these measures applicable and their usefulness actually proved.”

Quality of life in pharmacological intervention on autism spectrum disorders, Bertelli M et al., in Advances in Mental Health and Intellectual Disabilities, 7 1, 40-48

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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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