Truthful Information about Prognosis and Options for People with Advanced Cancer

有关晚期癌症患者的预后和选择的真实信息

• 批准号: 7468391
• 负责人: Thomas Joseph Smith
• 金额: $ 13.39万
• 依托单位: VIRGINIA COMMONWEALTH UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2007
• 资助国家: 美国
• 起止时间: 2007-07-15 至 2010-07-14
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7468391
• 关键词: Adjuvant; Advanced Malignant Neoplasm; Adverse effects; American Society of Clinical Oncology; Arts; Attention; Breast; Breast Cancer Treatment; Cancer Center; Cancer Patient; Cancer Prognosis; Cancer Survivor; Caring; Characteristics; Clinic; Clinical Trials; Colon; Condition; Decision Aid; Decision Making; Diagnosis; Disclosure; Disease; Disseminated Malignant Neoplasm; Effectiveness; Family; Genus Cola; Health Professional; Home environment; Hospice Care; Internet; Intervention; Knowledge; Libraries; Life; Link; Lung; Malignant Neoplasms; Malignant neoplasm of lung; Malignant neoplasm of prostate; Measures; Medical; Medical Records; Numbers; Online Systems; Palliative Care; Parents; Patients; Play; Printing; Process; Quality of life; Radiation; Randomized Controlled Clinical Trials; Randomized Controlled Trials; Recruitment Activity; Sampling; Site; Societies; Solid Neoplasm; Source; Standards of Weights and Measures; Supportive care; Symptoms; Testing; Time; Toxic effect; Toxicity due to chemotherapy; Training; Treatment Effectiveness; Writing; cancer care; cancer therapy; chemotherapy; dalton; desire; experience; hormone refractory prostate cancer; hospice environment; improved; oncology; outcome forecast; response; satisfaction; treatment effect

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.

描述（由申请人提供）： 患者希望获得关于晚期转移性癌症的预后和治疗的真实信息，但医生很少提供，并且很少有关于预后和化疗的具体益处和毒性的信息的互联网或印刷来源。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。或者，我们不知道有多少人由于对有效性和毒性缺乏了解而拒绝了潜在的有用治疗。互联网的使用在美国社会的各个部门越来越普遍。基于网络的客观真实的信息，病人和医生共享已被证明可以改善辅助乳腺癌治疗的决策。我们建议通过向晚期实体瘤患者提供有关预后和治疗方案的真实信息来“公平的信息竞争环境”，具体目的是让他们与医生讨论。主要目的：1）测试患者是否愿意完全披露其病情，包括实际预后，实际治疗效果数字和选择。次要目的是评估：2）患者获得的信息，3）满意度，4）患者是否与医生讨论信息; 5）对 希望我们将创建包含预后信息的表格; 1年生存率;反应机会，症状 控制和副作用;以及转移性乳腺癌、结肠癌、肺癌和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名患者进行试点测试;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。我们将评估知识，治疗前/后的选择，希望，满意度和使用干预措施的人的特征。如果试点成功，我们将在随机对照试验中对标准信息进行测试。 敷设总结：提供关于晚期转移性癌症预后的诚实和真实的信息可以改善共同决策，减少癌症治疗的差异。通过直接向患者提供预后和专家治疗信息，让他们与医疗保健专业人员进行讨论，我们可以评估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。