Charles Normand Edward Kennedy Professor of Health Policy & Management University of Dublin

1. A brief reflection on the ‘QALY problem’ in Economic Evaluation in Palliative Care:Can alternative approaches such as choice experiments provide more useful insights? Charles Normand Edward Kennedy Professor of Health Policy & Management University of Dublin Trinity College

2. The ‘QALY problem’ There are uses of resources that appeal to public and decision makers’ preferences, but using conventional measurement of cost per QALY they would be clearly outside the ‘cost-effective’ range. Introduction 1

3. Options Identify context specific problems in the use of QALYs Ignore the problem Reject the QALY approach altogether Easy to show that cost per QALY of some palliative interventions lie outside the ranges normally considered to be cost-effective. Introduction 2

4. Special pleading? If the rules produce the wrong answers then it is time to change the rules (hard cases, bad laws) Interested individuals and groups have incentives to exaggerate the scale of benefits However, there may not be enough space on the zero-one scale to represent life that is much improved, but was better than death, and is not perfect. Is there a problem?

5. Great strength (and major objective) of QALY approach is comparability - gains can be compared across a wide range of diseases and settings Simplicity – time for all individual and for any individual at has a constant value, which also has useful properties such as being additive Difference between good time and less good time is the quality weighing, normally between zero and one, but formally allowed to be negative Rules do not allow quality of time to be more than perfect. Strength of QALYs

6. 1 Nothing wrong with the measures used, but some benefits have not been measured caring externalities changes in quality of life that happen outside the observed window – eg quality of life across our lifetime from the knowledge that we will receive effective and appropriate end of life care, and this might justify ‘loss making’ treatments. Two possible explanations 1

7. 2 There is a problem with adding up periods of time, even after adjusting along the quality dimension, since time is simply not additive this potentially undermines the use of QALY type metrics across all health care settings and issues the extent to which non-additive time matters may depend on the nature of the need and intervention, and assumption of additive time possibly acceptable in most circumstances. Two possible explanations 2

8. Two needs for economic evaluation of palliative interventions to allow comparison between different palliative services for different needs to compare palliative interventions to others within health and social care (and potentially beyond). Making progress or waiting for perfection 1

9. For making comparisons outside palliative care the need is for a common metric that covers all types of interventions If the QALY problem is accepted most likely way forward is a modified QALY process that allows in some way for the ‘problem’ This might involve counting caring externalities and benefits in the form of anticipation and reassurance that end of life care will be forthcoming. Making progress or waiting for perfection 2

10. Some allowance might be made for components of a ‘good death’ that would be in some way separate from the days that lead up to it It is a feature of any single index measure that its fit in particular circumstances may not be very good even though overall it is a good measurement tool. Making progress or waiting for perfection 3

11. Generic quality of life tools such as EQ5D do not pretend to measure difference well within a particular disease or intervention category but aims instead to provide the basis for comparing across categories. Researchers often choose to use it alongside scales and measures that provide more sensitive measurement suitable for a particular disease or pattern of treatment. Making progress or waiting for perfection 4

12. Even if we do not accept that there is a QALY problem, there may be better ways of making comparisons within palliative care, using palliative care specific tools for setting objectives, outcomes and benefits of the services. Particular reasons to be concerned about these given that complex interventions to manage complex needs tend not to have evidence that particular services suits all people apparently in the same circumstances. Making progress 1

13. Some evidence that variation in use of palliative care services reflects user preferences as well as disease and symptoms Useful to answer questions about priority of needs and services for particular groups but more important to know about services deemed important by users Conventional economic evaluation might guide overall budget for palliative care but configuration of services within budget better supported by alternative ways of eliciting views of users. Making progress 2

14. Experience of using discrete choice experiments is encouraging in several ways. it is clear that tasks set were well understood by recipients of palliative care, and they were happy to take part in research. service users have a diversity of preferences users were keen on the availability of access to specialist symptom management services and were not willing to trade these. Making progress 3

15. Apparently minor issue but potentially serious Preferences seem almost lexicographic People are only interested in considering some questions when they have resolved others Components that they are not willing to trade-off Economics has problems in handling such preferences since they mean that utility and welfare functions are not well behaved and not continuous. Making progress 4

16. Is the main problem that we are not making good judgements between palliative care and other health and social care, or sub optimal use of palliative care resources? Not obvious that standard methods of economic evaluation are well suited to latter task Identifying the components of care packages that are most useful to users is more important Stated preference techniques (including discrete choice experiments) offer a well understood framework for selecting the components of care that are of most value to users. Making progress 5

17. While aspiring to more formal framework for comparison, unless tools are fit for purpose better to have more limited comparability using techniques that are more sensitive for measurement The point is not to use bad versions of the perfect approach when better tools (that may not use quite the right approach) may improve resource allocation within palliative care. Making progress 6

18. Thank you for your attention