Center for Outcomes Research and Evaluation, Maine Medical Center, Portland, Maine, USA.
BMJ Open. 2013 Sep 13;3(9):e003226. doi: 10.1136/bmjopen-2013-003226.
To explore the experiences of patients with prostate cancer with risk information and their perceptions of the value of personalised risk information in treatment decisions.
A qualitative study was conducted using focus groups. Semistructured interviews explored participants' experiences with using risk information, and their perceptions of the potential value of personalised risk information produced by clinical prediction models.
English-speaking patients, ages 54-82, diagnosed with prostate cancer within the past 3 years, residing in rural and non-rural geographic locations in Maine (USA), and attending prostate cancer patient support groups.
6 focus groups were conducted with 27 patients; separate groups were held for patients with low-risk, medium-risk and high-risk disease defined by National Comprehensive Cancer Network guidelines.
Several participants reported receiving risk information that was imprecise rather than precise, qualitative rather than quantitative, indirect rather than direct and focused on biomarker values rather than clinical outcomes. Some participants felt that personalised risk information could be useful in helping them make better informed decisions, but expressed scepticism about its value. Many participants favoured decision-making strategies that were heuristic-based and intuitive rather than risk-based and deliberative, and perceived other forms of evidence-emotions, recommendations of trusted physicians, personal narratives-as more reliable and valuable in treatment decisions.
Patients with prostate cancer appear to have little experience using personalised risk information, may favour heuristic-based over risk-based decision-making strategies and may perceive personalised risk information as less valuable than other types of evidence. These decision-making approaches and perceptions represent potential barriers to the clinical use of personalised risk information. Overcoming these barriers will require providing patients with greater exposure to risk information, education about the nature and value of personalised risk information and training in deliberative decision-making strategies. More research is needed to confirm these findings and address these needs.
探讨前列腺癌患者的风险信息体验及其对临床预测模型生成的个性化风险信息在治疗决策中潜在价值的看法。
采用焦点小组的定性研究。半结构式访谈探讨了参与者使用风险信息的经验，以及他们对临床预测模型生成的个性化风险信息潜在价值的看法。
英语熟练，年龄 54-82 岁，在过去 3 年内被诊断为前列腺癌，居住在缅因州（美国）的农村和非农村地区，参加前列腺癌患者支持小组。
共进行了 6 组焦点小组，每组 27 名患者；根据美国国家综合癌症网络指南，分别为低风险、中风险和高风险疾病的患者设立了单独的小组。
一些参与者报告说，他们收到的风险信息不够准确，而是定性的，间接的，而不是直接的，侧重于生物标志物值，而不是临床结果。一些参与者认为个性化风险信息可能有助于他们做出更明智的决策，但对其价值表示怀疑。许多参与者倾向于基于启发式而非基于风险的决策策略，认为其他形式的证据——情感、信任的医生的建议、个人叙述——在治疗决策中更可靠和有价值。
前列腺癌患者似乎很少有使用个性化风险信息的经验，可能更倾向于基于启发式的决策策略，而不是基于风险的决策策略，并且可能认为个性化风险信息不如其他类型的证据有价值。这些决策方法和看法可能是个性化风险信息临床应用的障碍。克服这些障碍需要让患者更多地接触风险信息，教育他们个性化风险信息的性质和价值，并培训他们进行深思熟虑的决策策略。需要进一步研究来证实这些发现并满足这些需求。
