Skedgel Chris, Mott David John, Elayan Saif, Cramb Angela
Office of Health Economics, London, UK.
Health Economics Group, University of East Anglia, Norwich, UK.
MDM Policy Pract. 2024 May 15;9(1):23814683241252425. doi: 10.1177/23814683241252425. eCollection 2024 Jan-Jun.
Advocates argue that end-of-life (EOL) care is systematically disadvantaged by the quality-adjusted life-year (QALY) framework. By definition, EOL care is short duration and not primarily intended to extend survival; therefore, it may be inappropriate to value a time element. The QALY also neglects nonhealth dimensions such as dignity, control, and family relations, which may be more important at EOL. Together, these suggest the QALY may be a flawed measure of the value of EOL care. To test these arguments, we administered a stated preference survey in a UK-representative public sample. We designed a discrete choice experiment (DCE) to understand public preferences over different EOL scenarios, focusing on the relative importance of survival, conventional health dimensions (especially physical symptoms and anxiety), and nonhealth dimensions such as family relations, dignity, and sense of control. We used latent class analysis to understand preference heterogeneity. A 4-class latent class multinomial logit model had the best fit and illustrated important heterogeneity. A small class of respondents strongly prioritized survival, whereas most respondents gave relatively little weight to survival and, generally speaking, prioritized nonhealth aspects. This DCE illustrates important heterogeneity in preferences within UK respondents. Despite some preferences for core elements of the QALY, we suggest that most respondents favored what has been called "a good death" over maximizing survival and find that respondents tended to prioritize nonhealth over conventional health aspects of quality. Together, this appears to support arguments that the QALY is a poor measure of the value of EOL care. We recommend moving away from health-related quality of life and toward a more holistic perspective on well-being in assessing EOL and other interventions.
Advocates argue that some interventions, including but not limited to end-of-life (EOL) care, are valued by patients and the public but are systematically disadvantaged by the quality-adjusted life-year (QALY) framework, leading to an unfair and inefficient allocation of health care resources.Using a discrete choice experiment, we find some support for this argument. Only a small proportion of public respondents prioritized survival in EOL scenarios, and most prioritized nonhealth aspects such as dignity and family relations.Together, these results suggest that the QALY may be a poor measure of the value of EOL care, as it neglects nonhealth aspects of quality and well-being that appear to be important to people in hypothetical EOL scenarios.
倡导者认为，临终（EOL）护理在质量调整生命年（QALY）框架下处于系统性劣势。根据定义，临终护理持续时间短，且并非主要旨在延长生存期；因此，对时间因素进行估值可能并不合适。QALY还忽视了尊严、控制权和家庭关系等非健康层面，而这些在临终时可能更为重要。综合来看，这表明QALY可能是衡量临终护理价值的一个有缺陷的指标。为了验证这些观点，我们在一个具有英国代表性的公众样本中进行了一项陈述偏好调查。我们设计了一个离散选择实验（DCE），以了解公众对不同临终场景的偏好，重点关注生存期、传统健康层面（尤其是身体症状和焦虑）以及家庭关系、尊严和控制权感等非健康层面的相对重要性。我们使用潜在类别分析来了解偏好异质性。一个四类潜在类别多项逻辑回归模型拟合效果最佳，并展示了重要的异质性。一小部分受访者强烈优先考虑生存期，而大多数受访者对生存期的权重相对较小，总体而言优先考虑非健康方面。这个DCE说明了英国受访者偏好方面的重要异质性。尽管对QALY的核心要素有一些偏好，但我们认为大多数受访者更倾向于所谓的“善终”而非最大化生存期，并发现受访者倾向于在质量的非健康方面而非传统健康方面给予更高优先级。综合来看，这似乎支持了关于QALY是衡量临终护理价值的一个糟糕指标的观点。我们建议在评估临终护理和其他干预措施时，摒弃与健康相关的生活质量观念，转向对幸福感更全面的视角。
倡导者认为，包括但不限于临终（EOL）护理在内的一些干预措施受到患者和公众的重视，但在质量调整生命年（QALY）框架下处于系统性劣势，导致医疗资源分配不公平且效率低下。通过离散选择实验，我们为这一观点找到了一些支持证据。在临终场景中，只有一小部分公众受访者将生存期列为优先考虑因素，而大多数人则将尊严和家庭关系等非健康方面列为优先考虑因素。综合来看，这些结果表明QALY可能是衡量临终护理价值的一个糟糕指标，因为它忽视了质量和幸福感的非健康方面，而这些方面在假设的临终场景中似乎对人们很重要。
