Table 3.
Major themes present in interview transcripts.
| Theme | Number of interviews (%) | Participant ID | Transcript excerpt |
|---|---|---|---|
| Prostate cancer treatment | |||
| 1. Urgency to physically remove the cancerous prostate after diagnosis | 10 (50) | 32 | I mean, I wanted it out the next day. . .I was told to come in Monday morning, after Thanksgiving, with my wife, and we went through a couple of different options. And I made the mistake by waiting five seconds to say take it out, which was one of the options. |
| 2. Prioritization of life-saving cancer treatment over the risk of subsequent incontinence | 5 (25) | 67 | I was more concerned with the cancer and just getting rid of it, at least my wife was. And I was aware of [the risks], but I’m willing to take my chances, you know? |
| Post-prostatectomy stress urinary incontinence | |||
| 3. Lack of understanding of the risk of incontinence following prostatectomy | 12 (60) | 91 30 |
No, I didn’t know any of [the risks]. I didn’t know, I didn’t know that I would have any problem. I thought everything would be fine until afterwards. But we talked about pads and the need for one or two pads a day, or three and how many pads that kind of thing. But we did have discussions about that. But at the time, I probably wasn’t hearing those discussions, because you know, I’ve never had any incontinence problems ever. |
| 4. PPUI impacted participants’ lives | 17 (85) | 36 | It ruins your life. Basically, they save your life, and then they ruin it in the same process |
| Initial AUS placement | |||
| 5. Delay in PPUI treatment | 4 (20) | 67 | I never got the information there that artificial sphincter was a possibility. And I probably would have gone to see [my urologist] sooner had I known that that possibility existed. |
| 6. Lack of awareness of the AUS limitations (e.g., finite lifespan, need for revision) | 5 (25) | 55 | I would not hold back on the cons, because, you know, for me, finding out the cons be, you know, on my own, totally pissed me off, because I felt I should have been told. |
| 7. Satisfaction with primary AUS results | 17 (85) | 66 | Hey, I loved it. I thought it was the greatest thing since sliced bread. |
| AUS revision | |||
| 8. Recurrence of incontinence drove revision, with continued leakage between revision | 9 (45) | 82 | It leaked. And then I went back to [my urologist] and he did something else. And when I got I’ve got out of the way after I healed back up. It worked pretty good. But never like it did in the beginning. And then and then a year and then gradually it went back to leaking again. And then I went back to [my urologist] and he fixed it again. And it lasted a month or two and it leaked and I went back the third time I think and when I got when he got done, it didn’t work at all. It was worse than when I started |
| 9. Lack of awareness that device failure and revision were possible | 6 (30) | 91 | Had I realized that it would go bad, and that I would, at some point, need to have it replaced? Had I known that I could have saved myself, I don’t know how many years. Maybe two or three years of agony if I just had known that. And I would have immediately had it taken care of and I wouldn’t have had to go through all of these infections and stuff. |
| 10. Mixed results following AUS revision. Six participants expressed disappointment, 11 expressed satisfaction, and 2 had mixed feelings | 19 (95) | 68 66 |
Life was good again afterwards. That one was a very disappointing surgery, because that was, I mean, that one didn’t work. |
| AUS future | |||
| 11. Uncertainty as to what options were for future AUS care | 6 (30) | 63 | I’ve been still having problems, and I, I don’t know if there’s anything else that can be done. . . I sort of got a sense after this last revision, that that was the last thing he thought he could do. But like I say, I haven’t really communicated with them. And maybe that’s not correct. |
| 12. Desire for increased follow-up with their surgeons | 8 (40) | 46 | I thought there might have been some follow up that happens over the years. Just to see if I was doing okay, or not, but I have no idea if, the thing is, is that if there’s anything else I should be doing. |
| 13. Interest in attempting further surgery if there were improvements made in the AUS device | 2 (10) | 1 | Yeah, I’d be the first one to go in line. I don’t mind the third operation. If there’s a new device, you know what I’m saying? I would gamble. Absolutely. Tell me we gotta put the same device and blah, blah, blah. |
| Physician–patient relationship | |||
| 14. Spending time on patient education during AUS consultations improved the physician–patient relationship | 10 (50) | 32 | He’s as nice as he can be. I’ve learned that the better the doctor is, the more humble they are. And when I had the consultation with [my doctor], he explained everything to me, took all the time in the world. And, you know, told me what to do, or what he was going to do. |
| 15. Distrust of the surgeon was an obstacle preventing further surgery | 5 (25) | 82 | I think they were all in a hurry. I think they all were ready to go home. And by the end the whole thing was botched. And [my urologist] didn’t say it but when I went back to have it fixed, he said “we’re gonna do it right this time.” Which led me to believe something was botched up. And I laid there all day waiting to be operated on. It was a disaster. . . But anyway, in fact, I’m mentally looking for another urologist. |
| Miscellaneous themes | |||
| 16. Hesitation for further surgery with age | 2 (10) | 1 | I’m in my 70s now. I don’t want the surgery to get into trouble and make it so my lifespan is shorter than this. So, there’s a kind of severe anxiety for that third surgery unless it’s new devices |
| 17. Desire for a community of patients who were experiencing similar medical issues | 7 (35) | 55 | It’s good to know that you’re not the only one out there that has this this problem, you know? |
| 18. Supplementation of physician-provided information with independent research was helpful | 10 (50) | 66 | I did a quite a bit of reading on my own too. I mean, I know I read [my doctor’s] book. And I mean, I did a lot of research. So, you know, in addition to what doctors tell me, I’m one that does a lot of independent research and like to verify things that I’m told. So I was well informed. |
| 19. AUS could complicate other medical procedures | 4 (20) | 46 | When you go in for other medical tests, be it MRI or CT scan or something? The explanation to the technician and to the medical team, you know, to be careful. Be careful with Foley operations. Don’t put a Foley in there. |
AUS, artificial urinary sphincter; CT, computed tomography; MRI, magnetic resonance imaging.