Consumer information materials and a communication aid for diagnostic tests for breast disease

许多研究表明，大多数患者希望参与他们可能接受的医疗治疗的临床决策。因此，正在编制信息材料，以帮助消费者和医生共同努力，根据现有的最佳证据作出令人满意的治疗决定，并反映个别病人对治疗方案的需要和偏好。然而，关于消费者是否也想参与是否进行医学测试的决定，我们知之甚少。测试可以是微不足道的，如血液或尿液测试，或相当重大和侵入性的，如活检或结肠镜检查。考虑进行医学检查的人可能想知道以下问题的答案：我有多少机会接受这种疾病的检查？如果测试结果是阳性，我有多大的机会患上这种疾病？如果测试结果是阴性的，那么我患上这种疾病的几率有多大？测试结果将如何影响我的病情治疗？测试可能的副作用是什么？一般来说，关于医学测试的信息材料只描述测试本身，而不包含人们回答这些问题所需的信息。即使是医生也可能不必提供回答这些问题所需的数据。然而，如果没有这些信息，消费者就无法对是否进行测试做出真正明智和理性的选择。该项目旨在了解消费者是否愿意参与医疗检查的决策，他们希望获得什么样的信息，并为少数乳腺癌检查开发和试用信息材料和交流辅助工具。我们将使用诊断乳腺癌的测试作为我们的模型，但我们预计这项工作将适用于广泛的医学测试。

Many studies have now shown that the majority of patients want to participate in clinical decisions about medical treatments they might receive. As a result, information materials are being developed to help consumers and doctors work together to reach satisfying treatment decisions which are based on the best available evidence and also reflect the individual patient's needs and preferences about the treatment options. Very little is known, however, about whether consumers also want to participate in decisions about whether to have a medical test. Tests can be trivial, such as a blood or urine test, or quite major and invasive, such as a biopsy or a colonoscopy. People considering a medical test might want to know the answers to the following questions: What is my chance of having the disease being tested for? If the test result is positive what is the chance I have the disease? If the test result is negative what is the chance I have the disease anyway? How will the test result influence treatment of my condition? What are possible side-effects of the test? Generally information materials about medical tests only describe the test itself, and do not contain the information people need to answer these questions. Even doctors may not have to hand the data needed to answer these questions. Yet without this information, consumers cannot make truly informed and rational choices about whether to have the test. This project aims to find out whether consumers want to participate in decisions about medical tests, what information they would want to do this, and to develop and trial information materials and a communication aid for a small number of breast cancer tests. We will use tests for diagnosing breast cancer as our model but we anticipate the work will be applicable across a wide range of medical tests.