Abstract
When going ‘beyond the patient’, to measure QALYs for unpaid carers, a number of additional methodological considerations and value judgements must be made. While there is no theoretical reason to restrict the measurement of QALYs to patients, decisions have to be made about which carers to consider, what instruments to use and how to aggregate and present QALYs for carers and patients. Current, albeit limited, practice in measuring QALY gains to carers in economic evaluation varies, suggesting that there may be inconsistency in judgements about whether interventions are deemed cost effective.
While conventional health-related quality-of-life tools can, in theory, be used to estimate QALYs, there are both theoretical and empirical concerns over the suitability of their use with carers. Measures that take a broader view of health or well-being may be more appropriate. Incorporating QALYs of carers in economic evaluations may have important distributional consequences and, therefore, greater normative discussion over the appropriateness of incorporating these impacts is required. In the longer term, more flexible forms of cost-per-QALY analysis may be required to take account of the broader impacts on carers and the weight these impacts should receive in decision making.
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Notes
In all three cases, interventions may also affect the QOL of paid carers; however, these impacts would be assumed to be accounted for when costing the intervention (i.e. through requiring paid carers to work longer hours, or paying higher wages to compensate paid carers for unpleasant tasks). Impacts on unpaid carers’ QOL are more complex and do not appear to be closely related to time spent caring.[28]
This point and the remainder of the discussion in this section equally applies when considering the carer as the prime target and spillover effects on patients.
If the spillover effects on carers are negative, the implications are reversed.
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Acknowledgements
A previous draft of this manuscript was presented to the Health Economist’s Study Group in Sheffield (UK) in 2009. The authors would like to thank the participants at the session, the presenter Stephanie Manson, and Emma Frew, Will Hollingworth, Emma McIntosh and two anonymous reviewers, for helpful comments at various stages of the work.
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Al-Janabi, H., Flynn, T.N. & Coast, J. QALYs and Carers. Pharmacoeconomics 29, 1015–1023 (2011). https://doi.org/10.2165/11593940-000000000-00000
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DOI: https://doi.org/10.2165/11593940-000000000-00000