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I would like to thank Whitehurst et al for their comments on my paper.1 Although I will argue their approach will not eliminate the potential for disability discrimination from quality-adjusted life year (QALY)-based assessment, their comments were very thought provoking.
Whitehurst et al argue that, to the extent that allocating healthcare by QALYs discriminates against disabled patients, the fault is not with the QALY framework, but with ‘the descriptive systems of preference-based health-related quality of life (HRQoL) instruments’.1 Specifically, they argue that some HRQoL survey instruments do not characterise health impairments adequately. For example, Whitehurst et al mention an earlier study of HRQoL survey instruments that had different ways of asking about mobility. Some instruments asked specifically about the respondent’s ability to walk, while others asked about mobility. The study found that, in relation to individuals with spinal cord injuries, survey instruments focused on ability to walk produced lower quality of life scores than instruments focused on mobility. (The authors of the study do not explain this, but I hypothesise that survey respondents who are asked about ability to walk rather than mobility might not be prompted to think of the possibility that they would find other ways of getting around.)
Whitehurst et al argue from this that survey instruments should include ‘adequate’ health state descriptions. This seems eminently sensible. However, contrary to their view, there is no guarantee that this will avoid discrimination. In fact, …
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