Truthful Information about Prognosis and Options for People with Advanced Cancer

描述(由申请人提供)： 患者希望获得有关晚期转移性癌症预后和治疗的真实信息，但医生很少提供这些信息，也很少有互联网或印刷来源提供有关化疗的预后、具体益处和毒性的信息。只有22%的肺癌患者会再次接受化疗，如果他们在开始之前就知道实际的治疗生存益处的话。或者，我们不知道有多少人由于缺乏对有效性和毒性的了解而拒绝接受潜在有用的治疗。互联网的使用在美国社会的各个阶层中越来越普遍。患者和医生共享的基于网络的客观真实信息已被证明有助于改进乳腺癌辅助治疗的决策。我们建议通过向晚期实体肿瘤患者提供有关预后和治疗选择的真实信息，以特定的意图与他们的医生讨论，以“公平的信息竞争环境”。主要目的：1)测试患者是否会选择完全披露他们的病情，包括实际预后、实际治疗效果数字和选项。次要目标是评估：2)患者获取的信息，3)满意度，4)患者是否与他们的医生讨论信息；5)影响 希望。我们将创建包含预后、一年存活率、应答机会、症状等信息的表格 控制和副作用；转移性乳腺癌、结肠癌、肺癌和激素难治性前列腺癌患者的治疗选择。我们将把这些信息链接到梅西癌症中心(MCC)的网站，并在MCC对25名患者进行试运行；然后，我们将把网站链接到MCC和全国癌症幸存者联盟，并在100名患者中进行测试。我们将评估干预者的知识、治疗选择、希望、满意度和特征。如果试验成功，我们将对标准信息进行随机对照试验。 文章摘要：提供有关晚期转移性癌症预后的诚实和真实的信息可能会改善共同的决策，减少癌症治疗中的差异。通过直接向患者提供预后和专家治疗信息，供他们与医疗保健专业人员讨论，我们可以评估关于预后和治疗方案的知识对癌症护理选择、希望和满意度的影响。

DESCRIPTION (provided by applicant): Patients desire truthful information about prognosis and treatment of advanced metastatic cancer but doctors rarely provide it, and there are few internet or print sources for information about prognosis and specific benefits and toxicity of chemotherapy. Only 22% of lung cancer patients would take chemotherapy again, if they had known the actual treatment survival benefit before starting. Alternatively, we do not know how many people decline potentially useful treatment due to poor knowledge about effectiveness and toxicity. Internet use is increasingly common among all sectors of US society. Web-based objective truthful information that patients and doctors share has been shown to improve decision making in adjuvant breast cancer treatment. We propose to "level the information playing field" by making truthful information about prognosis and treatment options available to patients with advanced solid tumors, with the specific intent that they discuss with their doctors. Primary aim: 1) test if patients will opt for full disclosure about their condition, including actual prognosis, actual treatment effect figures, and options. Secondary aims are to assess: 2) information that patients access, 3) satisfaction, 4) if patients discuss the information with their doctor; 5) impact on hope. We will create tables with information on prognosis; 1-yr survival; chance of response, symptom control, and side effects; and treatment options for patients with metastatic breast, colon, lung, and hormonerefractory prostate cancer patients. We will link the information to the Massey Cancer Center (MCC) website, and pilot-test the website at MCC with 25 patients; then, we will link the website to MCC and National Coalition of Cancer Survivors and test in 100 patients. We will assess knowledge, treatment choices pre/post, hope, satisfaction, and characteristics of those who use the intervention. If the pilot is successful, we will test in a randomized controlled trial against standard information. Lay summary: Providing honest and truthful information about prognosis of advanced metastatic cancer may improve shared decision making and reduce disparities in cancer treatment. By providing the prognosis and expert treatment information directly to the patient, for them to discuss with their health care professionals, we can assess the impact of knowledge of prognosis and treatment options on cancer care choices, hope and satisfaction.