Table 3 Representative patient quotes (Q) regarding their counselling needs

Q29: I found it very important that reassurance was offered. That there was a way out of the situation I was in. (Male, 67y, RC-neobladder)

Q30: Some issues were given little thought. From the start of diagnosis to after treatment, I don’t think I saw the doctor for more than an hour. For a procedure with such a big impact on your life, that does not feel reassuring.(Male, 48y, RC-urostomy)

Q31: You better not ask for too many opinions. As a patient, that makes you doubt a lot more. (Male, 48y, RC-urostomy)

Q32: Via the internet, I started looking up several more things, such as treatment options in different countries. In the end, I still stuck to my decision. (Male, 65y, TMT)

Q33: When faced with such an illness, you are very much being lived and sometimes information passes you by. (Female, 32y, RC-neobladder)

Q34: It can help to think about the different treatment options and discuss them at home. That way you make a more conscious choice. (Female, 32y, RC-neobladder)

Q35: It has the advantage of not having a physician in front of you trying to shove just one solution down your throat, so to speak. (Male, 48y, RC-urostomy)

Q36: I find that if the physician has explained everything to you in detail that you don’t need that. It can only make you doubt. (Female, 79y, TMT)

Q37: I wonder whether the information and solution that comes out of such a tool will apply to me and whether the information is correct. I think I would still find personal contact more reliable than a tool. (Male, 48y, RC-urostomy)