The value of personalised risk information: a qualitative study of the perceptions of patients the prostate cancer
The value of personalised risk information: a qualitative study of the perceptions of patients the prostate cancer
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DOI：
10.1136/bmjopen-2013-003226
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发表时间：
2013-01-01
期刊：
影响因子：
2.9
通讯作者：
Hansen, Moritz
中科院分区：
文献类型：
--
作者：
Han, Paul K. J.;Hootsmans, Norbert;Hansen, Moritz
目的：探讨前列腺癌患者获得风险信息的经历及其对个性化风险信息在治疗决策中的价值的认知。设计：采用焦点小组进行定性研究。半结构化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产生的个性化风险信息的潜在价值的看法。研究对象：年龄在54-82岁，在过去3年内诊断为前列腺癌，居住在美国缅因州农村和非农村地区，并参加前列腺癌患者支持小组的英语患者。设置：6个焦点组，27例患者；根据国家综合癌症网络指南对低风险、中风险和高风险疾病患者进行分组。结果：一些参与者报告收到的风险信息是不精确的而不是精确的，是定性的而不是定量的，是间接的而不是直接的，并且侧重于生物标志物的价值而不是临床结果。一些与会者认为，个性化的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和直觉的决策策略，而不是基于风险和深思熟虑的决策策略，并认为其他形式的证据情绪、值得信赖的医生的建议、个人叙述在治疗决策中更可靠、更有价值。结论：前列腺癌患者似乎缺乏使用个性化风险信息的经验，可能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的价值低于其他类型的证据。这些决策方法和观念是临床使用个性化风险信息的潜在障碍。要克服这些障碍，需要向患者提供更多的风险信息，教育他们了解个性化风险信息的性质和价值，并对他们进行审慎决策策略方面的培训。需要更多的研究来证实这些发现并满足这些需求。
Objective: 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.Design: 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.Participants: 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.Setting: 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.Results: 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.Conclusions: 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.