Fransen Mirjam, Meertens Ree, Schrander-Stumpel Connie
Department of Health Education and Promotion, Maastricht University, P.O. Box 616, NL 6200 MD Maastricht, The Netherlands.
Patient Educ Couns. 2006 Apr;61(1):126-33. doi: 10.1016/j.pec.2005.02.018. Epub 2006 Jan 6.
Genetic counseling involves advising people about genetic disorders, genetic risks and preventive measures, and guiding them in the process of decision-making. It remains unclear what effect certain aspects of risk communication have on outcomes like risk perception and the decisions people take. In order to examine this relationship between process and outcomes, the present study aimed to develop a reliable checklist to assess aspects of risk communication in genetic counseling.
A preliminary checklist was developed on base of literature and tested for manageability in a pilot study. The checklist was adapted and tested for inter-observer reliability in 14 and 56 genetic counseling sessions. Inter-observer reliability was measured by computing Kappa and proportions of agreement.
Most of the items of the last version of the checklist had Kappa values between 0.4 and 1, which means that the inter-observer reliability for most items was sufficient or good. On the majority of items, the observers showed more than 80% agreement.
The checklist we have developed has adequate inter-observer reliability and may be applied in future studies to assess risk communication aspects in genetic counseling.
This checklist could be a useful instrument to identify the relationship between aspects of risk communication in genetic counseling and outcomes. Showing which communication skills and risk presentations affect client's feelings and decisions may help to improve genetic counseling.
遗传咨询包括向人们提供有关遗传疾病、遗传风险和预防措施的建议，并在决策过程中为他们提供指导。风险沟通的某些方面对风险认知和人们所做决策等结果有何影响，目前尚不清楚。为了研究这一过程与结果之间的关系，本研究旨在制定一份可靠的清单，以评估遗传咨询中风险沟通的各个方面。
在文献基础上制定了一份初步清单，并在一项试点研究中对其可管理性进行了测试。在14次和56次遗传咨询会议中对该清单进行了调整，并测试了观察者间的可靠性。通过计算卡帕值和一致性比例来衡量观察者间的可靠性。
清单最终版本的大多数项目的卡帕值在0.4到1之间，这意味着大多数项目的观察者间可靠性足够或良好。在大多数项目上，观察者的一致性超过80%。
我们制定的清单具有足够的观察者间可靠性，可用于未来研究中评估遗传咨询中的风险沟通方面。
这份清单可能是一种有用的工具，可用于识别遗传咨询中风险沟通方面与结果之间的关系。展示哪些沟通技巧和风险呈现方式会影响客户的感受和决策，可能有助于改善遗传咨询。
