Work continues at the London School of Economics as explained in more detail below in the report from Martin Knapp and Valentina Iemmi. Meanwhile we have begun to think about creating greater awareness of NAP and establishing relationships with the people and organisations who can help us realise our goals.
Our main achievement has been setting up the website which we hope will be informative and interesting. Comments and suggestions for improvement are welcome.
Raising awareness among parliamentarians is going to be vitally important for our campaign. The All Party Parliamentary Group on Autism has been one of the largest of these Groups and has now been freshly reconstituted after the General Election. Elizabeth Vallance and Ian Ragan had a productive meeting with the
Chair of the APPGA, Cheryl Gillan MP, and as a result, we will maintain close contact with them and present progress of NAP at one of their future meetings.
Barry Sheerman MP has proposed the creation of a Parliamentary Commission on autism which, while independent of NAP, would give a tremendous boost in both Houses of Parliament to awareness of the issues surrounding ASD, and could complement the work being undertaken in the NAP project. We are very excited by this possibility and we look forward to saying more in future progress reports.
Outside the parliamentary world, we have been invited to contribute articles on NAP to Good Autism Practice (for its October 2015 issue) and to SEN Magazine when we have some results to report from the work at the LSE. Excitingly, we have also been invited to write an editorial on NAP for The Lancet. It seems that word is getting around.
And now over to Martin and Valentina…..
The economic case for interventions for people with autism
Progress report – June 2015
Work on the project
We are currently conducting rapid literature reviews on the effectiveness and cost-effectiveness of interventions in the autism spectrum disorders (ASD) area for both children and adults. In particular, we are currently searching for evidence on multidisciplinary diagnostic assessment, intensive behavioural intervention, arts interventions, and interventions for parents and carers. Searches are conducted in specialised databases and websites of key organisations.
We are organising the evidence into tables to summarise key information: name of the intervention approach, country where the evaluation has been conducted, who the intervention is for (e.g. type of ASD diagnosis, level of learning disability, age), description of the intervention itself, setting (e.g. school, health clinic, at home), components of the intervention (e.g. different therapy types), evidence on effectiveness, evidence on cost-effectiveness, and information on costs of delivery. This evidence will help inform our discussions with experts and also help us to select interventions for which we will examine the economic case.
We are also searching for datasets from previous evaluations (e.g. effectiveness trials or observational studies) that we may be able to use for interventions for which we cannot find economic evidence. Those data will be used in simulation modelling or to examine economic questions in other ways, and it might even be possible to conduct new analyses of the primary dataset in some cases. One example is the Scottish Autism dataset, including data on sociodemographic and clinical characteristics, and service use for children and adults with different types of ASD diagnosis collected in Scotland in 2014.
We are also exploring ethical issues (broadly defined) in the ASD area and their economic implications. The identification of ethical issues could help us select the interventions for which we will examine the economic case, the design of the economic models, and the interpretation of results. For example, ethical issues around early interventions for autism (When is early ‘too early’?), around intervention effectiveness (Which dimensions of health or quality of life matter?), around intervention efficiency (Are clinical and economic gains today more important than gains in the future?), and around fairness (Are interventions accessible to all socio-economic groups?).
We are currently beginning to consult with a number of experts to find out about research currently underway, to understand the relevance and significance of the preliminary findings of our rapid literature reviews, to explore the relevance of emerging interventions, and (later) to identify some of the parameters needed for our own analyses.
Martin Knapp and Valentina Iemmi are leading and conducting much of the work, based in the Personal Social Services Research Unit at the LSE. Anna Rupert (MSc student and speech and language therapist) and Margaret Perkins (Research Officer in PSSRU) are currently assisting on the evidence review. Jeroen Luyten (Fellow in Health Economics and Health Policy in the Department of Social Policy at LSE) is assisting on ethical and related issues.
Martin Knapp & Valentina Iemmi
Personal Social Services Research Unit
London School of Economics and Political Science
MacKay T, Boyle J, Knapp M & Connolly M (2013) A multi-strand investigation of microsegmentation of the autism spectrum to enhance the data on the economic costs and benefits of provision. Good Autism Practice, 14(Supplement 1):99-104.