A patient-reported questionnaire to measure the use of informal care, social care and personal expenses

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–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.