Boyer Laurent, Baumstarck Karine, Guedj Eric, Auquier Pascal
APHM, Marseille, France.
Expert Rev Pharmacoecon Outcomes Res. 2014 Dec;14(6):767-9. doi: 10.1586/14737167.2014.950236. Epub 2014 Oct 1.
The authors propose a reflection on quality of life (QoL) measures in medicine following the work of G. Canguilhem on health and disease and the latest results from neuroimaging. The use of QoL measures implies that the tension between the two competing visions of health (i.e., normative and descriptive) needs to be overcome. A profound cultural change is needed if we want clinicians, researchers and decision makers to suspend their prevailing scientific ideologies about disease and examine the content of the patient's experience. Another issue that concerns the direction of future QoL is that until now, the available measurements and recent work were ambiguous, trying to find a commonly acceptable, intermediate position halfway between these normative and descriptive visions. It may be time to discard the medical normative vision and instead assume a radically humanistic approach to medicine by providing purely descriptive measures based on the values and emotions of patients.
作者们基于G. 康吉莱姆关于健康与疾病的研究成果以及神经影像学的最新研究结果,对医学中生活质量(QoL)的衡量标准进行了反思。生活质量衡量标准的使用意味着,需要克服两种相互竞争的健康观念(即规范性观念和描述性观念)之间的紧张关系。如果我们希望临床医生、研究人员和决策者暂停他们关于疾病的主流科学意识形态,并审视患者体验的内容,就需要进行深刻的文化变革。另一个与未来生活质量方向相关的问题是,到目前为止,现有的测量方法和近期的研究工作都含糊不清,试图在这些规范性观念和描述性观念之间找到一个普遍可接受的中间立场。也许现在是时候摒弃医学的规范性观念,转而通过提供基于患者价值观和情感的纯粹描述性措施,采取一种激进的人文主义医学方法了。