Han Paul K J, Lehman Thomas C, Massett Holly, Lee Simon J C, Klein William M P, Freedman Andrew N
Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, USA.
Health Expect. 2009 Mar;12(1):4-17. doi: 10.1111/j.1369-7625.2008.00524.x.
To explore laypersons' understanding of individualized cancer risk estimates, and to identify conceptual problems that may limit this understanding.
Risk prediction models are increasingly used to provide people with information about their individual risk of cancer and other diseases. However, laypersons may have difficulty understanding individualized risk information, because of conceptual as well as computational problems.
A qualitative study was conducted using focus groups. Semi-structured interviews explored participants' understandings of the concept of risk, and their interpretations of a hypothetical individualized colorectal cancer risk estimate.
Eight focus groups were conducted with 48 adults aged 50-74 years residing in two major US metropolitan areas. Participants had high school or greater education, some familiarity with information technology, and no personal or family history of cancer.
Several important conceptual problems were identified. Most participants thought of risk not as a neutral statistical concept, but as signifying danger and emotional threat, and viewed cancer risk in terms of concrete risk factors rather than mathematical probabilities. Participants had difficulty acknowledging uncertainty implicit to the concept of risk, and judging the numerical significance of individualized risk estimates. The most challenging conceptual problems related to conflict between subjective and objective understandings of risk, and difficulties translating aggregate-level objective risk estimates to the individual level.
Several conceptual problems limit laypersons' understanding of individualized cancer risk information. These problems have implications for future research on health numeracy, and for the application of risk prediction models in clinical and public health settings.
探讨非专业人士对个性化癌症风险评估的理解，并识别可能限制这种理解的概念性问题。
风险预测模型越来越多地用于向人们提供有关其患癌症和其他疾病的个人风险的信息。然而，由于概念和计算方面的问题，非专业人士可能难以理解个性化风险信息。
采用焦点小组进行定性研究。半结构化访谈探讨了参与者对风险概念的理解，以及他们对假设的个性化结直肠癌风险评估的解读。
在美国两个主要大都市地区，对48名年龄在50 - 74岁的成年人进行了8个焦点小组访谈。参与者具有高中或以上学历，对信息技术有一定了解，且无个人或家族癌症病史。
识别出几个重要的概念性问题。大多数参与者认为风险不是一个中立的统计概念，而是意味着危险和情感威胁，并且从具体的风险因素而非数学概率的角度看待癌症风险。参与者难以承认风险概念中隐含的不确定性，也难以判断个性化风险评估的数值意义。最具挑战性的概念性问题与风险的主观和客观理解之间的冲突，以及将总体水平的客观风险评估转化为个体水平的困难有关。
几个概念性问题限制了非专业人士对个性化癌症风险信息的理解。这些问题对未来健康素养研究以及风险预测模型在临床和公共卫生环境中的应用具有启示意义。
