About the Project

Standard economic evaluations in health care measure the benefit of treatments in terms of quality-adjusted life years (QALYs), which are measures that combine quality of life with length of life. The ‘quality’ adjustment is based on health-related aspects of quality of life. However, there are concerns that measures of health-related quality of life gain miss out important benefits of treatments that are not to do with health. At the same time, different measures are used in health care, social care and public health making it difficult to compare across these sectors, which is important when thinking about the wider government budget.

The Extending the QALY project aims to develop a broad measure of quality of life for use in economic evaluations across health and social care. There are three key distinctions between existing health and quality of life measures and this new instrument:

  • Firstly, the new instrument will aim to capture the benefits of interventions in health, social care, and for carers.
  • Secondly, the instrument will be made up of aspects of life that patients, social care users and carers think are important to them and are impacted by their health condition, the care or treatment they receive or their caring role.
  • Thirdly, because the new instrument is intended to be used in economic evaluations that combine the benefits of extending years of life with improving quality of life (i.e. QALYs), it will need to be valued on a zero to one scale, where zero is equivalent to being dead and one is full quality of life.

Project overview Presentation 

Project Timelines
The project began in May 2017 and will last two and half years. During this time the team will conduct interviews and surveys with patients, social care users, carers and the general public to explore what aspects of quality of life users think are important and identify the best questions to use to measure quality of life. The project has six stages:

  • Stage 1: Identify potential domains for the measure [Completed]
  • Stage 2: Generate a potential list of items/questions for each domain [Completed]
  • Stage 3: Test the face validity of potential items with users [May 2018-Dec. 2018]
  • Stage 4: Psychometric testing of potential items with users [Sept. 2018 – Feb. 2019]
  • Stage 5: Valuation of selected items by members of the general public [Feb. 2019 – Oct. 2019]
  • Stage 6: Implementation, assessment and impact [Nov. 2019 forward]

Further details of the stages can be found in the project outline.

Who is Involved?
The project is led by Prof. John Brazier at the University of Sheffield with co-investigators from the University of Kent, the National Institute of Health and Care Excellence and the Office for Health Economics. Five international teams are also involved in the project  (see Project Team for details).

The project has four types of governance groups who are actively involved in consultation at all the key stages:

  • A Steering group made up of experts and stakeholders in health and social care and developers of measures
  • A Public Involvement group made up of user experts who are patients, carers or social care users. This includes a project-specific group and NICE Citizens Council members
  • Euroqol Group Working Groups which are made up of researchers focused on specific areas of interest for the Euroqol group e.g. the Descriptive Systems Working Group and the Valuation Working Group
  • An Advisory group which is made up of a diverse group of researchers and stakeholders with an interest in the project. Members are kept up to date with findings and can provide electronic feedback if they want. Contact Julie Johnson, the project administrator, if you are interested in joining this group.
Funding
The project is funded by an MRC Industry Collaboration Award (MRC Grant number 148787) with the Euroqol Group.

It is also funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) Yorkshire and Humber.