Saturation was reached after six interviews (four face-to-face and two by telephone) lasting 35–60 minutes each. The women were aged 32–86 years and all had suffered recurrent UTI for at least 1 year. The presenting symptoms consisted of dysuria, abdominal pain, frequency, urinary incontinence, and occasional fever. Analysis of the interviews yielded three main themes: medical route, knowledge of the condition, and social and psychological impact. The following sections describe each theme in turn.
All respondents described that their general practitioner (GP) had tested their urine for a UTI when they had symptoms of a UTI and prescribed antibiotics when positive. They reported having received antibiotic treatment more than once for UTI, but also noted that some antibiotics worked better than others. Some respondents reported a delay in antibiotic treatment because they had to wait for the results of the urine culture before a GP was willing to start antibiotic therapy.
Well then, that is what you do at the GP. You bring in your urine and after a day you’re supposed to make a call. It always makes me feel like: oh, time to call again.
Some respondents had undergone physical examination, and only one reported completing a voiding diary.
Interviewer: What tests were done by the GP?
Respondent: Well actually, well yes, not internally. He has occasionally patted me on the back asking if I felt pain here or there.
None of the respondents had used antibiotics prophylactically, although one patient was aware that this was a therapeutic option.
Well, I thought that he maybe, that you maybe had–for example–a standard antibiotic treatment, because I’ve heard that you could preventively take something like two antibiotic pills.
All respondents were given advice about prophylaxis by their GPs, such as taking cranberry tablets, ensuring adequate fluid intake, and performing post-coital voiding.
And I’ve had it prescribed by the GP. But nowadays I just get them at my local pharmacy, those Cranberry tablets, because they are a lot cheaper there; but yes, I do make use of them.
Some respondents described repeatedly asking their GP for a urology referral, but having to wait up to 2 months for an appointment after the referral was made.
Yes, yes, I did visit there, but of course I insisted on it.
One respondent stated that her GP advised that a urology referral was needed and that she agreed because she felt like there had to be something wrong to get so many UTIs.
And then I told them my story and that I’ve had it all so and so. And then they said, “well it’s about time that you visit a urologist.” And then I responded, “yes, I happen to agree, now that I’ve had it so often in succession and it still isn’t gone, there is probably something not completely in order indeed.”
Full recovery was not always the main goal of patients. Some described that they would be satisfied with a reduction in the frequency of UTIs.
Interviewer: And when would you be satisfied?
Respondent: Well yeah, if I notice any results.
Interviewer: So, if you only had cystitis once a year, would you say the treatment was successful?
Another described that they would be satisfied with a clarification about their UTI
Interviewer: And when would you be satisfied?
Respondent: Well at first instance I would say, with regard to tomorrow's examination, that I would be happy if I just had more clarity about my condition.
Patient knowledge of the condition
Respondents described a variety of measures they had adopted to prevent recurrence, including taking cranberry tablets and ensuring adequate fluid intake, post-coital voiding, and intimate hygiene. Some respondents were able to list all preventive measures, while others only named one or two. Most respondents had looked for information about recurrent UTI on the internet, but others did not want to because they feared what they would find.
No, no, no I totally can’t. Yes, I have such a tablet but no, I don’t look up anything. No, not at all. Oh, no I don’t, I really don’t want to know.
There were also differences in the information wanted by respondents. Some only wanted information about the causes, some only wanted information about the therapeutic options, and others wanted both. All respondents stated that they received information from the hospital about their appointment and were able to explain both the voiding diary they had to complete and the uroflowmetry to be performed. They felt like they had received enough information on these matters before the consultation.
Alright. And what exactly is this “pot” research? Well it goes, that’s exactly it, it measures how fast or how slowly I pee, how much leaves my bladder and what its composition is, so to speak.
Most respondents did not know about other potential diagnostic tests. One respondent was aware of cystoscopy because she had been referred previously.
He’ll probably have to look into the bladder anyway. Because that’s what happened the last time. And then you can really see that a bladder isn’t quite ... clean from the inside either.
Social and psychological impact
All respondents described that their daily lives were affected by the symptoms of recurrent UTI. They all had active social lives and some had needed to take measures in the event of urinary incontinence when they visited someone (such as taking sanitary napkins or clean underwear). The hospital visit was also a burden for some because they were unable to arrive with a full bladder because of symptoms. Others reported that they could not talk about their problems with relatives because they felt this was inappropriate.
And urology is of course still a subject that isn’t that openly discussed at parties and the like.
Another respondent felt guilty because she regularly handed her urine into the general practice and thought that she was complaining too much.
But sometimes I do get the feeling that you’re a bit of a whiner. That’s not how my GP responds, but I do feel like we, as patients, while we are confronted with the hindrance and pain and constant annoyance of having to pee so often, invoke a reaction of: “oh here comes another one with his pee.” Yeah then they shouldn’t have invented them in the first place, urologists.
Respondents described a variety of worries. The most common was about taking regular antibiotics, which many felt was harmful to their bodies.
Because I don’t want to take antibiotics every time since that isn’t good for your body either.
Another common worry was about the cause of the recurrent UTI. Respondents felt that there had to be something wrong with their bodies to be getting so many UTIs.
Why do you get a cystitis every time? There has to be something wrong somewhere.
The questionnaire of patient expectations
We formulated a 32-item questionnaire based on the major themes identified in the participant interviews. The questions varied in style, including statements that required a yes or no answer, statements that required answers on 5-point Likert scales, open-end questions and questions that required multiple answers with room for free text responses. Next, we tested the questionnaire in interviews with five patients and five non-patients. This revealed that three questions needed to be withdrawn due to similarities with other questions and that ten questions needed to be rewritten to improve comprehensibility. The final questionnaire consisted of 32 questions and was entitled the ESC-rUTI questionnaire (Expectations of Treatment in Secondary Care–Recurrent UTI). A copy of the English translation is provided in Supplementary File 2.