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


National Institute for Health (NIHR) Research for Patient Benefit (RfPB) Ref. NIHR201961

What is the research question?

We aim to develop validated modules for a patient-reported resource-use questionnaire to estimate care costs in randomised controlled trials (RCTs) and other research settings.

What is the problem?

Health economists carry out cost-effectiveness studies to find out whether particular care offers good value. In a cost-effectiveness study, we need to measure both the cost of the care itself, and the effect it has on other services that patients use. At the moment, the way we measure costs is not ideal.

What is the aim of the research?

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 modules. The first will ask patients about social care they have used (e.g. home help). The second will cover informal care, such as help from a partner or friend. The final module will ask about costs that patients have paid themselves.

How will this be achieved?

To develop the modules, 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 that they think are important. We will hold a group discussion with researchers and public representation to find out which suggestions are most important to measure.

We will design draft modules by writing questions that represent best practice. We will interview approximately 20 researchers by telephone to find out whether they think the modules are complete, and whether it is possible to find cost information 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 will be asked to fill in the questionnaire while describing their thoughts out loud. This will allow us to learn whether there are 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 acceptable 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 modular questionnaire that is ready to be used in research for a wide range of diseases and health conditions.

Who is leading the research?

Dr Joanna Thorn, Research Fellow, Population Health Sciences, University of Bristol.

Further information:

Dr Joanna Thorn

For more information or to get involved in this project, please contact bnssg.research@nhs.net.

The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.