The work at the London School of Economics and Political Science is progressing well as described below by Martin Knapp and Valentina Iemmi. In addition, since the recommendations in our Expert Report are going to take the form of proposals for new directions in both policy and research, we are continuing to spread the word about NAP to organisations involved in both aspects. Ian Ragan spoke about NAP at the members’ meeting of the Autism Alliance and has been invited to address the annual conference of the ADHD Foundation next month. Elizabeth Vallance briefed Normal Lamb MP, the former Minister of State for Care and Support, and other meetings have taken place with the British Academy and Cauldwell Children.
The Parliamentary Commission launched by Barry Sheerman MP will have its first meeting on December 1st 2015 and we are pleased that Dame Stephanie Shirley and Professor Emily Simonoff, both part of the NAP Strategy Board, have agreed to become members of the Commission.
Meetings with other bodies will become an increasingly important aspect of our work over the next few months building to a full media and political campaign to support the recommendations of the Expert Report. A meeting was held this month to discuss the best way forward to create such a campaign, and we are grateful for Autistica’s generosity in hosting the meeting. We are equally indebted to the individuals from a number of organisations, highly experienced in campaigning, who generously gave their time at this meeting to offer help and advice. We shall be acting on their suggestions over the next year.
At the Strategy Board meeting on October 23rd, the recommendations for future campaigning were endorsed and amongst many other topics, the Board made a start on defining the three year goals of NAP. Aiming for achievements that are ambitious and substantial but not impossible, the Board took the view that the overarching goal of NAP was to improve the quality of life of autistic people and that all subsidiary goals must feed into this. A substantial (and yet to be defined) increase in spending on the most beneficial areas of research and services remains a concrete aim, but other goals such as identifying important gaps in the evidence base for interventions, reviewing and strengthening the impact of the Autism Act and its equivalents in the devolved nations, and defining the essential requirements for a comprehensive plan for support of autistic people, are all to be considered in the future.
Finally, we are pleased to publicise the article on NAP published in the October 2015 edition of Good Autism Practice which can be read and downloaded from the News page of our website.
The economic case for interventions for people with autism
Progress report – October 2015
The primary aim of our work within the National Autism Project is to examine the economic case for a range of interventions in the autism spectrum disorders (ASD) area.
In pursuit of this aim we are therefore:
- reviewing existing evidence on the effectiveness of interventions in the ASD area;
- reviewing and summarise existing evidence on the cost-effectiveness of interventions;
- carrying out new empirical analyses as both the need and opportunity arise; and
- consulting with experts about research currently underway, in order to understand the relevance and significance of evidence, to explore the relevance of emerging interventions, and to identify some of the parameters needed for our own analyses.
The project started in March 2015 and runs for 18 months. To date we have focused on the evidence review and consultations with expert group members. We started identifying the most promising, high-impact interventions, although we will be open to evidence on promising interventions throughout the 18-month period. From November 2015 we will start empirical analysis of the economic case for specific interventions. Our consultations with individuals from the expert group (and others) will continue throughout the period as needed. We will complete our final report in August 2016, but we are sharing findings with the Strategy Board as they emerge.
Work on the project
We are continuing to conduct rapid literature reviews on the effectiveness and cost-effectiveness of interventions in the ASD area for both children and adults. In particular, we are continuing to look for evidence on multidisciplinary diagnostic assessment, intensive early interventions, cognitive-behavioural therapy, social skills interventions, vocational interventions, assistive technologies, 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 information is then underpinning our discussions with experts and also helping us to select interventions for which we will examine the economic case.
We are also continuing to search 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 continuing to explore 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 have been exploring the practical and conceptual challenges in conducting economic evaluation in the autism area that would help us designing the economic models. In the past two months, over 20 interviews have been conducted with various stakeholders in the autism area (researchers, clinicians, NGOs, policy makers, people with autism and their carers) to better understand issues related to the opportunities and challenges in performing and using economic evaluation in the area (e.g. societal values on which the economic case is built, capturing the attention of decision makers). We are continuing 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.
Plan for the next 6 months
Over the next six months (October-March 2015) we plan to continue the evidence review and consultations with individuals from the expert group (and others), to start economic analysis for some interventions identified, and to produce the first ‘summary economic cases’ that would be accessible to a non-technical readership.
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.