Lay Summary

Background

There are different measures of health or quality of life that are used in different sectors e.g. healthcare sector and social care. These measures are useful for comparing outcomes in these individual sectors to support decision making e.g. when a new intervention is being tested. Interventions can also have an impact on informal carers so assessing outcome in this group is also important and there are specific informal carer measures. However, different measures for different sectors and populations can be limited when outcomes are broader than say health, for example, when services are used.

We have developed a new measure of health and wellbeing that can be used for those receiving healthcare, social care as well as for informal carers. The measure is based on what these different groups consider to be important for their quality of life. This measure has not been tested to assess whether it is valid for the use in these populations which is important to support its adoption for use. We would also like to link this measure to existing measures so that decision-makers can see how these existing measures compare.

Methods

Participants: The study will collect information from individuals who self-report health conditions (and are likely to be in receipt of health and social care) and informal carers. Participants will be recruited online. We aim to recruit 250 informal carers and 800 individuals with health conditions. Online panels will be used to identify online participants.

Survey: The information will be collected using a survey that will contain the new measure and existing measures that are used by decision-makers. We will also collect information on the characteristics of the participants such as their age, gender, specific questions on their health or caring etc. in order to assess the impact of these characteristics. We plan to send the survey to everyone and then to a subset a short period after (1 week) in order to see whether the new measure is stable when there is no change.

Analysis: We will compare the new measure with different measures of health and quality of life. We will assess how well the new measure assesses aspects of health or using social care and informal caring. We will also assess how well it is able to show those who have more problems based on the characteristics of the participants. Finally, we will also assess linking the new measure to existing measures. The new measure will be scored in different ways in the future, therefore, this first stage will only use one scoring approach as the work to score it is still ongoing.

Proposed outcome: The study aims to provide information on how well the new measure works in the different populations that it is designed for. We also aim to provide information on how the measure is linked to existing measures. Future work will look at other scoring approaches. We will also look at collecting the data in different formats such as using a self-complete paper-questionnaire.