What are the questions that patients with early-stage prostate cancer want to ask before decision making?

The aim of the study was to determine what information is most needed by patients with early-stage prostate cancer during the time between diagnosis and treatment decision making. This study is a part of a multicentered international study conducted in Canada, the Netherlands, Italy, Poland, Spain, Turkey and England. The questionnaire was completed by 55 Polish patients, 3 to 24 months after they had completed their treatment. Patients used a 4-pt Likert scale (essential, desired, no opinion, avoid) to rate how important it was to obtain answers to each of the 93 questions, between diagnosis and treatment decision. Participants also indicated the reason for which they wanted each essential and desired question answered: to help them understand their situations, to decide on treatment, to plan their future or other. The patients also indicated who they remember participating in making the decision and who they would like to participate if the decision was to be made today. 23 questions were described as essential by 49% or more of the patients. We observed an immense variability of results. Each question was rated as essential or desired by at least a few patients. Twelve questions were identified as questions which should be avoided by 9 to 20% of participants: Of the 23 questions rated essential by at least 49% of patients, on average 44% wanted the information to help them understand their situations and 23% to help them decide on treatment. Patients had made their decision: with their family and doctor (31%), with their doctor (29%), alone (11%), with their family (9%), no answer - 11%. In 9% of cases the decision had been made without the active participation of the patient. If the patients were to make their decision now, they would have liked to make it with their doctor and family (47%), with their doctor (29%), alone (9%), with their family (4%), no answer- 9%. Eighty percent of patients recalled taking an active role in their treatment decisions and that increased to 89% if they were making decision today. There is a large variability of information needs. There's a need to create core information that could be provided to all early-stage prostate cancer patients. Patients want to have a more active role in decision making and if they were to make the decision today, most of them would have liked to take part in decision making process together with their family and their doctor. (authors)