Going beyond health related quality of life - towards a broader QALY measure for use across sectors

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The NHS has a limited budget and so deciding to spend money on an expensive drug means less is available for other services. NICE helps the NHS by providing guidance on whether new medicines should be made available to patients based on the 'value for money' of the new treatment compared to what will be forgone. The value for money of a new treatment is decided by looking at the cost per gain in health from the treatment. However, there are concerns that the measure used to assess health gain (known as EQ-5D) does not pick up important benefits of the treatment 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.We are proposing to look at developing a new measure that includes aspects of life that people think are important to their quality of life. This includes their social life, aspects related to their emotions and mental health as well as other how they feel about their lives alongside questions that have been asked in the past about physical and role functioning. We have done some work with service providers who have already identified that the existing measures do not allow for comparisons across sectors or cover all that they think is important for service users. The next step will be to generate a long list of questions asking people about their quality of life and asking a sample (n=50) of the public and service users to tell us what they think about them. On the basis of this the items will be revised for the next phase.We will then conduct a survey with around 2000 users of services in general practice, mental health and social care and informal carers and ask them to complete the long list of questions (up to 50). Their answers will be used to test out the questions to see which ones would be best to use in a smaller final version of the measure.The next stage develops a way of scoring people's answers to these questions on a scale from zero to one, where zero is for someone whose quality of life is so bad that it is as bad as being dead up to one for best imaginable quality of life, with all scores in between. These scores are obtained from asking members of the general public to undertake a series of choices between living in poorer quality of life for longer or a shorter period in the full quality of life, a method called time trade off. These data will be analysed in various ways to help estimate the scores for the quality of life measure and to understand how people's values vary on the basis of who they are. We will also use a different method that allows members of the general public who work with NICE (i.e. members of NICE Citizen's Council) to provide values for the new measure using an approach that involves more discussion. These values will be compared to those generated by the TTO method to see if there are differences in values and to explore where and why they occur.The final part of this study will look at how to apply this measure to assess value for money of interventions across different areas of public services, including health care, social care and public health. This will involve re-scoring the existing health and social care measures in terms of the new quality of life measure and testing the impact using these re-weighted measures to compare existing interventions. Throughout the project, we will be working closely with NICE and other policy makers who might consider using the new measure and providing guidance on how to apply it in health, social care and public health. We will also work with the provider of the EQ-5D, the Euroqol group, which is the main measure used by NICE, in order to draw from their experience as well as on-going studies on developing and promoting the new measure.