Title: A patient-reported questionnaire to measure the use of informal care, social care and personal expenses
Funder: Department of Health and Social Care

Abstract: Background To assess the value for money that new interventions offer to the NHS and to society, it is necessary to measure both the benefits gained and the resources used. Typically, resource-use measurement focuses on healthcare. To address the increasing drive to consider care from an integrated perspective, impacts beyond the health sector must be measured; social care, informal care provided by family/friends, and private purchases represent key measures of additional resource use that should be considered. There is currently no concise standardised self-reported questionnaire that can capture these types of resource. Aims and Objectives To develop social care, informal care and patient personal expenditure questionnaire modules to be implemented alongside a recently developed healthcare module. To test the modules in populations receiving care to assess their validity, reliability and acceptability. To compile a complementary costing tool to ensure straightforward and rapid uptake of the instrument among researchers. Methods Following methodology developed in prior work, suitable items of social care, informal care and personal expenses will be identified by reviewing existing measures, and consulting social care professionals and care users. A focus-group-based prioritisation exercise will determine the items to be included in the modules. Draft questions will be constructed, and developed into prototype modules. Semi-structured qualitative telephone interviews will be carried out with up to 20 practising health economists. Feedback on the content, design, relevance and clarity of the new modules will be sought and, in particular, whether the answers can be readily valued. Face validity, content validity, wording, comprehensibility and acceptability of the new modules will be tested in think-aloud interviews with patients or care recipients. Up to 25 individuals will be asked to complete the modules while verbalising their thought processes in reaching an answer. The interviewer will probe participants to clarify any areas of confusion. The new modules will be piloted by post in a representative sample of the population (n=250). Feasibility and acceptability will be assessed by exploring instrument response rates, item response rates and completion times. Reliability will be explored using test&ndash;retest methodology: approximately 50 participants will be sent a duplicate instrument after a period of 1 week, and asked to re-complete it. Hypotheses such as an expectation that higher users of healthcare might also be higher users of other types of care will be tested to explore construct validity. The instrument will be finalised, and appropriate unit costs will be tabulated. Anticipated Impact and Dissemination The key output will be a research-ready tool for measuring resource use, which will improve the experience of participants in health and social care research studies. A rigorous method for measuring costs will lead to improved cost-effectiveness estimates supplying improved evidence on which to base decisions about allocating resources. The work will be disseminated via peer-reviewed journal publications, conference presentations and via the Database of Instruments for Resource-Use Measurement (DIRUM). The modules will also be actively marketed to potential users at meetings and conferences, ensuring that the benefits that can be achieved are maximised.

Lay abstract: It is important to use limited health and social care funds carefully. By improving the way we measure costs, we will be able to make better estimates of whether care offers good value for money. This will allow the people who distribute the funds to make better decisions. Patients and service/care users will then ultimately benefit from the best pattern of care to improve health and wellbeing for the nation. We are currently developing a questionnaire for asking about NHS healthcare (such as GP appointments) with direct input from patients. However, many people use care that is provided outside the NHS. In this project, we aim to extend the healthcare questionnaire by developing three further sections. The first will ask patients about social care they have used (e.g. home carers). The second will cover informal care, such as help from a partner/friend. The final section will ask about costs that patients have paid themselves. Throughout the project, we will seek advice from a Public Advisory Group (PAG) of 6-8 representatives with social-care experience. We will ask the PAG to help us design each part of the study, and to comment on the results at each stage. To develop the new sections, we will first work out what questions should be included by reviewing published work, and examining existing questionnaires. We will also ask social-care experts about services they think are important. We will hold a group discussion with researchers and public representatives to find out which suggestions are most important to measure. We will design draft questionnaire sections by writing questions that represent best practice. We will interview approximately 20 researchers by telephone to see whether they think the new sections are complete, and whether it is possible to find costs for each question. We will then interview about 25 patients, care users or carers to find out their views. We will use think-aloud methods, where people are asked to fill in the questionnaire while describing their thoughts out loud. This will help us to find any areas that are difficult to understand or complete, and to make further improvements. When these stages are complete, we will post the questionnaire to about 250 members of the public to test how usable the questionnaire is in practice. We will then finalise the wording based on all the feedback. We will also prepare lists of relevant costs to accompany the questionnaire. The end result of the project will be a flexible questionnaire that is ready to be used in research for a wide range of diseases and health conditions. We will ensure the questionnaire is widely used by explaining the results to policymakers, to researchers, and to patients and care users.

Research activity codes: 8.4 RESEARCH DESIGN AND METHODOLOGIES (HEALTH SERVICES)
Health categories: GENERIC HEALTH RELEVANCE