Quality of life of stroke in younger individuals - Utility assessment in patients with arteriovenous malformations

Background and Purpose Patients with arteriovenous malformations are younger individuals who are at risk of a stroke or have experienced one. Our objective was to determine these patients' perceptions of quality of life with a stroke by eliciting utility values. Methods Utility values were obtained with the standard gamble technique. Utilities are a holistic, quality of life measure between 0 and 1. We evaluated the patients current health state and written descriptions of major and minor stroke. Results Thirty-one consecutive outpatients participated. The mean age was 37 years (range, 18 to 57 years). Approximately 65% had suffered a stroke, of which 55% were major. Approximately 61% had a persistent deficit. The mean utilities were 0.45 for major stroke (95% confidence interval [CI], 0.33 to 0.56; range, 0.00 to 1.00), 0.81 for minor stroke (95% CI, 0.75 to 0.88; range, 0.30 to 1.00), and 0.81 for current health (95% CI, 0.73 to 0.89; range, 0.01 to 1.00). Subgroup analyses by demographic and clinical characteristics showed no significant differences. However, in both those patients who had never had a stroke and those who had survived a major stroke, values for the major stroke scenario were clustered at the two extremes. Among those with a current deficit, 79% preferred their own health state to that of the stroke scenario that was similar in severity. Conclusions Younger people who have had a stroke or are at risk demonstrate wide variations in their perception of quality of life. Furthermore, patients tend to be more risk averse with their own lives than with theoretical scenarios. We suggest tailoring medical decision making to individual preferences.