Abstract
BackgroundThere is a continuing debate on the desirability of informing patients with cancer and thereby involving them in treatment decisions. On the one hand, information uptake may be hampered, and additional stress could be inflicted by involving these patients. On the other hand, even patients with advanced cancer desire information on risks and prognosis. To settle the debate, a decision aid will be developed and presented to patients with advanced disease at the point of decision making. The aid is used to assess the amount of information desired. Factors related to information desire are explored, as well as the ability of the medical oncologist to judge the patient's information desire. The effects of the information on patient well-being are assessed by comparing the decision aid group with a usual care group.Methods/DesignThis study is a randomized controlled trial of patients with advanced colorectal, breast, or ovarian cancer who have started treatment with first-line palliative chemotherapy. The trial will consist of 100 patients in the decision aid group and 70 patients in the usual care group. To collect complete data of 170 patients, 246 patients will be approached for the study. Patients will complete a baseline questionnaire on sociodemographic data, well-being measures, and psychological measures, believed to predict information desire. The medical oncologist will judge the patient's information desire. After disease progression is diagnosed, the medical oncologist offers the choice between second-line palliative chemotherapy plus best supportive care (BSC) and BSC alone. Randomization will take place to determine whether patients will receive usual care (n = 70) or usual care and the decision aid (n = 100). The aid offers information about the potential risks and benefits of both treatment options, in terms of adverse events, tumour response, and survival. Patients decide for each item whether they desire the information or not. Two follow-up questionnaires will evaluate the effect of the decision aid.DiscussionThis study attempts to settle the debate on the desirability of informing patients with cancer. In contrast to several earlier studies, we will actually deliver information on treatment options to patients at the point of decision making.Trial registrationNetherlands Trial Register (NTR): NTR1113
Highlights
There is a continuing debate on the desirability of informing patients with cancer and thereby involving them in treatment decisions
The study population will consist of patients with advanced colorectal, breast, or ovarian cancer who are treated with first-line chemotherapy and upon disease progression will face the choice between two equivalent treatment options
Our research questions are: 1a) Do these patients want to be informed about the treatment options, and about their prognosis? 1b) Which factors determine whether or not these patients want to be informed? 2) Can the medical oncologist judge whether or not the patient wants the risk information? 3) What is the effect of the decision aid on patient outcomes compared to usual care?
Summary
Good clinical practice encompasses optimal providing of information to patients. as yet the debate about the desirability of informing patients with cancer and thereby involving them in their own care process has not been resolved. Survival information was desired by and provided to 92% of the women These patients were asked to make a hypothetical decision, since the treatment choice would not be carried out. Current practice of information giving by physicians was investigated by studies in Australia [14,15] and the Netherlands [16], by audio taping the first consult of incurable cancer patients with their oncologists. The study population will consist of patients with advanced colorectal, breast, or ovarian cancer who are treated with first-line chemotherapy and upon disease progression will face the choice between two equivalent treatment options. 3) What is the effect of the decision aid on patient outcomes (well-being, information and decision related outcomes, treatment choice) compared to usual care? Our research questions are: 1a) Do these patients want to be informed about the treatment options, and about their prognosis? 1b) Which factors determine whether or not these patients want to be informed? 2) Can the medical oncologist judge whether or not the patient wants the risk information? 3) What is the effect of the decision aid on patient outcomes (well-being, information and decision related outcomes, treatment choice) compared to usual care?
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