Table 2 Patient priorities influencing the treatment choice
Theme | Subtheme | Quote (Q)* | |
|---|---|---|---|
Curing the disease | Treatment characteristics | -Invasiveness | Q1: I did not choose for radiotherapy because there is a slightly higher chance of relapse. If there are no metastases and the bladder is removed you still have a decent chance of getting rid of it. (Male, 70y, RC-urostomy) Q2: I would rather go for a somewhat more extensive treatment that definitely everything is dead. (Female, 48y, RC-neobladder) |
-Timing | Q3: At the time I thought, the longer it’s there, the more chance you get metastases. You are consumed by fear. (Male, 48y, RC-urostomy) | ||
Disease characteristics | Q4: Had the tumour not been so large and had I had the certainty that it was not yet so far into the bladder wall, this treatment would certainly have been an option for me. (Male, 48y, RC-urostomy) | ||
Health- related quality of life | Treatment characteristics | -Duration | Q5: I would not choose that trial and error process with 20 treatments. Then I would rather opt for the brief pain followed by a 4-day admission and then a rehabilitation period. (Male, 67y, RC-neobladder) |
-Treatment setting (In- vs. outpatient) | Q6: Not having to be hospitalised for so long helped in making my decision. (Male, 65y, TMT) | ||
Recovery period | -Duration | Q7: With a neobladder, your body needs several months to learn to accept it and not reject it. Male, 75y, TMT) | |
-Active involvement | Q8: A neobladder is at least a year of training, therefore I would prefer a urostomy. After the treatment you are already depressed and then this comes on top of it. (Male, 70y, TMT) | ||
Physical health | -Activity level | Q9: I want to be able to do all my work well. That’s because we’re living on a farm. Doing my house chores and cleaning, a little bit of everything. (Female, 79y, TMT) Q10: The ease of being able to go anywhere without worrying is the urostomy going to leak. Can I go swimming or not. Those kind of things. (Male, 65y, TMT) Q11: With a urostomy bag I can do everything. I can do everything like before. (Male, 70y, RC-urostomy) | |
-Discomfort (pain, sleep, bladder function, urinary diversion,…) | Q12: I did not want that clock peeing. Because then you really have to set your alarm clock a few times at night to get up. I didn’t like that, I just want to have a good night’s sleep. (Male, 70y, RC-urostomy) Q13: I am already a difficult sleeper and because of the bag you might not be able to twist and turn in bed the way you want. (Female, 74y, TMT) Q14: In case of bladder-preservation, you still have an effect on the bladder itself. The bladder shrinks. You get a kind of shrivelling anyway. (Male, 70y, RC-urostomy) | ||
Mental health | -Physical integrity vs. tumour removal | Q15: I preferred surgery because I wanted that filthy thing out of my body. (Female, 48y, RC-neobladder) Q16: The tumour had to go away. And I think radiotherapy could not give me that guarantee soon enough. (Female, 48y, RC-neobladder) Q17: An operation remains an operation. This was not an intervention. There is no cutting or slicing. (Female, 84y, TMT) Q18: You only feel half human when your bladder is taken away. (Male, 65y, TMT) Q19: I went for a neobladder because you are starting with something totally new. You are starting with a totally new organ. (Male, 67y, RC-neobladder) | |
-Disease confrontation | Q20: With a stoma, you are confronted day and night. Always nurses. There’s always something. If you can just go to the toilet and help yourself, of course, that’s a big difference. (Female, 79y, TMT) | ||
Social health | -Social image | Q21: I don’t want to walk with a sign around my chest saying I am a cancer patient. I don’t want pity. I am still the same as before. (Female, 74y, TMT) | |
-Participation social/professional activities | Q22: I thought the impact on work and family was important. I’m still young, so I have a lot of years to work. I also have a young family. (Female, 32y, RC-neobladder) | ||
Sexual functioning | Q23: I didn’t want to be disabled, no libido anymore. No woman is going to stay with someone like that, which is normal too. (Male, 70y, TMT) | ||
Confidence in the treatment | Trust in clinician | Q24: At some point, the patient is completely in the hands of the medical profession in which the doctor makes decisions through his experiences in which he says this patient falls under this process and this one under this procedure. I would undergo both treatments though. (Male, 67y, RC-neobladder) | |
Medical experiences | Own experiences | Q25: I have found on several occasions if something has to go wrong then it is with me. Something is always wrong. From surgery and hospitalisations, I have very bad memories. (Female, 74y, TMT) | |
Experiences of others | Q26: I went to speak to someone who had undergone that operation. He found that it was very successful and after a few months he didn’t suffer from it anymore. I found that somewhat reassuring. (Male, 48y, RC-urostomy) | ||
Personal attributes | Age/ Health status | Q27: I think it takes away a serious piece of your life, especially at my age. 65 year is pretty young, I believe. (Male, 65y, TMT) | |
Sex | Q28: I still find a stoma different on a woman than on a man. I am quite a proud person. I can’t imagine that very well. (Female, 74y, TMT) | ||
Personality traits | |||