McAllister Marion, Payne Katherine, Macleod Rhona, Nicholls Stuart, Davies Linda
Nowgen, Manchester, UK.
J Health Psychol. 2008 Oct;13(7):895-905. doi: 10.1177/1359105308095063.
Outcome measurement in clinical genetics is problematic because the patient benefits are difficult to measure. The aim in this qualitative grounded theory study was to develop a theoretical framework describing the patient benefits from using clinical genetics services. Seven focus groups and 19 interviews were conducted with patients, patient group representatives, and health professionals. Data analysis resulted in construction of a model of empowerment summarizing the patient benefits from using clinical genetics services. Empowerment is similar to the concept of perceived personal control (PPC), and a measure of PPC has been developed for use in evaluations of clinical genetics services. However, empowerment includes some benefits not captured by PPC related to empowerment of other at risk relatives, and future generations.
临床遗传学中的结果测量存在问题，因为患者的获益难以衡量。这项定性扎根理论研究的目的是建立一个理论框架，描述患者使用临床遗传学服务的获益情况。我们对患者、患者群体代表和医疗专业人员进行了7个焦点小组讨论和19次访谈。数据分析得出了一个赋权模型，总结了患者使用临床遗传学服务的获益情况。赋权类似于感知到的个人控制（PPC）的概念，并且已经开发出一种PPC测量方法用于临床遗传学服务的评估。然而，赋权包括一些PPC未涵盖的获益，这些获益与其他高危亲属和后代的赋权有关。
