Title: Development of tools and methods for the measurement, valuation and inclusion of children and young people's time-related costs in economic evaluations.
Funder: Department of Health and Social Care

Abstract: Background Economic evaluations are routinely called upon to inform decisions on what programmes, interventions or treatments should be provided to adults and children. In studies that adopt a wide, societal perspective, it is important that all salient inputs and costs are accounted for, including costs incurred by individuals due to forgone personal time. However, there are few insights into how to estimate the cost of forgone time in children and young people (CYP). This gap in available methods is reflected in the limited and inconsistent inclusion of such costs in the applied literature. Aims The overarching aim of the planned research is to produce knowledge and methods that will help researchers to value and include CYP's time-related costs in economic evaluations. Investigation plan I will pursue this through six distinct but interrelated work packages (WPs). In WP1, I will explore what uncertainties or beliefs stop researchers from including CYP time-related costs in paediatric economic evaluations. To do so, I will carry out a web survey with people who produce and use economic evaluations. In WP2, I will carry out a Delphi study to produce guidance on when it may be justifiable to leave time-related costs out of calculations. In WP3, I will focus on producing a generic resource use questionnaire comprising questions about forgone time which researchers will be able to incorporate in their data collection process or forms. In WP4, I will carry out focus groups to understand what factors affect the value CYP they place on their time and look into appropriate ways to elicit this value, including different elicitation techniques (contingent valuation and discrete choice experiments) and formats. I will create preliminary versions of elicitation exercises and test these in cognitive ('think aloud') interviews with CYP respondents. This will help me pinpoint any issues and make necessary changes and decisions. In WP5, I will administer the elicitation exercises to a large, nationally representative sample of CYP identified through online panel membership. I will collect and analyse the responses using appropriate statistical methods to find out what value CYP place on their time and how/whether this is moderated by different factors/conditions or varies across age groups. In WP6, I will hold a Knowledge Exchange and Dissemination (KED) workshop to discuss key findings, debate and determine how they can be used in practice and identify areas for future work.Outcomes and dissemination This work will produce methods and tools to capture and reflect time-related costs in economic evaluations of interventions for CYP. This will address a methodological gap and help researchers produce, and policy-makers use, more dependable evidence for decision-making in non-adult populations. Better decision-making improves people's lives and helps ensure the sustainability of the NHS. To ensure findings reach relevant stakeholders, I will disseminate outputs to the research community (via articles, presentations/seminars/newsletters, social media/website), to policy-makers (through presentation at NICE and NHS England, events/conferences, the KED) and to the public (with CYP representatives, through accessible summaries, video animations and press-release articles sent to CYP networks and forums).

Lay abstract: BackgroundThere are 14 million children and young people (CYP) up to 18 years of age in the UK and, every year, we spend billions on programmes, services and care provided to them. To decide which programmes should be funded from the public purse, policy makers increasingly consult economic evaluations. These are detailed studies that sum up and compare all the resources used (costs) and outcomes arising from different programmes competing for funding. The amount of personal time people give up to receive care is a relevant resource and, when this differs across compared programmes, it ought to be valued, converted into a cost and included in all-encompassing economic evaluations. We know of ways to do so in adults, but we simply do not know how to value CYP's time and take this into account in economic evaluations. Aims My project aims to come up with methods and tools that will help researchers to measure, value and include CYP's time-related costs in economic evaluations. This will address a methodological gap and help make sure that decisions about what care to provide to CYP is based on dependable and comprehensive evidence. Design and methodsTo achieve the project's aims, I will split the project into six related work packages (WPs). In WP1, I will carry out a large internet-based survey to find out what uncertainties or beliefs stop researchers from including CYP time-related costs in economic evaluations. In WP2, I will get together a group of experts to come up with guidance on when it may be acceptable to leave time-related costs out of calculations. In WP3, I will put together a list of questions that researchers can readily use in their studies to collect data about how much time people miss out when receiving care. In WP4, I will look at appropriate ways of finding out what value CYP place on their time and, I will prepare questionnaires (called choice experiments) suitable for this purpose. In WP5, I will ask a large number of CYP to complete the questionnaires, and I will analyse the responses to find out what value CYP place on their time and how this differs across situations and age groups. In WP6, I will bring together researchers, policy makers and CYP representatives to discuss the study and its findings, debate how best to use them and look for further ways to encourage their use in future economic evaluations. Public involvementI developed this project with the help of the NIHR Young Persons' Steering Group West Midlands. The group gave valuable feedback on the topic, methods and design, and made useful suggestions about different aspects, including appropriate and effective ways to recruit CYP participants, how to design CYP-friendly group discussions and how to share findings widely. We agreed to continue working together and drew up a plan for involvement in different areas, including steering the project, recruiting study participants, producing CYP-friendly study materials, interpreting the study's results and working together to present the findings. Dissemination I will use various paths to make the project and its findings known. I will talk about my study and its findings to the research community within and outside the UK through journal articles, presentations, seminars, newsletters, the study's website and social media. I will also present my study to policy-makers at NICE and NHS England, write summaries and talk about it in relevant events and conferences. Equally importantly, I will also reach out and communicate my findings with the public, especially young people, through accessible summaries, short animated videos and press-release articles sent to well-known CYP networks and forums.

Research activity codes: 8.2 HEALTH AND WELFARE ECONOMICS
Health categories: GENERIC HEALTH RELEVANCE