People in states worse than dead according to the EQ-5D UK value set: would they rather be dead?

PURPOSE: Quality-adjusted life years (QALYs) measure health by combining length and quality of life. QALYs constitute the effect side of incremental cost-effectiveness ratios, describing the results of health economic evaluations. The objectives of this study were to (1) investigate the prevalence of states worse than dead (SWD) when using the EuroQol-5D UK value set, and (2) to study to what extent SWDs are reasonable with a starting point in experience-based valuations of health states. METHODS: Data from a Swedish cross-sectional population survey were used. The survey was directed to 10,000 persons 65 years and older and its primary aim was to investigate the prevalence and consequences of chronic pain. The survey included questions reflecting life situation and well-being. Some of these were used in order to characterise people in SWD. RESULTS: SWD were found in 1.8% of the 6611 respondents. The prevalence of SWD increased with advancing age and was more common among women than men. The control questions used indicated that most of the persons being in SWD according to the EQ-5D UK value set most probably would not judge themselves to be in a SWD. CONCLUSIONS: Though negative QALY-weights are not very common, they constitute a non-negligible part of health states in a Swedish population 65 years and older. Prevalence of SWD is higher among women than men and increases with age. From responses to other questions on well-being and life situation, there is reason to doubt the reasonableness of experience-based negative QALY-weights in many cases.