How Well Do the Generic Multi-attribute Utility Instruments Incorporate Patient and Public Views Into Their Descriptive Systems?

Multi-attribute utility instruments (MAUIs) are increasingly being used to generate utility data, which can be used to calculate quality-adjusted life-years (QALYs). These QALY data can then be incorporated into a cost-utility analysis as part of an economic evaluation, to inform health care resource allocation decisions. Many health care decision-making bodies around the world, such as the National Institute for Health and Care Excellence, require the use of generic MAUIs. Recently, there has been a call for greater input of patients into the development of patient-reported outcome measures, and this is now actively encouraged. By incorporating the views of patients, greater validity of an instrument is expected and it is more likely that patients will be able to self-complete the instrument, which is the ideal when obtaining information about a patient's health-related quality of life. This paper examines the stages of MAUI development and the scope for patient and/or public involvement at each stage. The paper then reviews how much the main generic MAUIs have incorporated the views of patients/the public into the development of their descriptive systems at each of these stages, and the implications of this. The review finds that the majority of MAUIs had very little input from patients/the public. Instead, existing literature and/or the views of experts were used. If we wish to incorporate patient/public views into future development of MAUIs, qualitative methods are recommended.