Truthful Information about Prognosis and Options for People with Advanced Cancer

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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.