Current treatment guidelines for overactive bladder (OAB) advice a linear pathway based on treatment invasiveness (1). Patients often try two or more treatments before satisfaction (2). The current treatment algorithm may not produce a quick reduction in symptom severity for many patients, leading to impaired quality of life and additional costs (3). To better understand the expectations and experiences of patients of their OAB treatment, we performed this qualitative study.

We performed an exploratory qualitative study by interviewing female patients with OAB and urge-incontinence. We randomly selected patients from a large database of patients with OAB/urge-incontinence treated in our outpatient clinic between January 1st, 2014, and September 30th, 2016. If approved, patients sent us an informed consent. Patients were interviewed by telephone using a semi-structured interview guide. Recruitment ended when saturation was reached, i.e. there were no new opinions or findings in two consecutive interviews. Interviews were auto-taped and transcribed verbatim. The two researchers separately analyzed the transcripts and added codes to the responses. After the initial coding, we evaluated the codes and organized them into themes, using Atlas.TI 8® (ATLAS.ti Scientifc Software Development GmbH).

We interviewed nine patients with OAB. In total, we labeled 232 codes, resulting in 14 themes, which were categorized in three major themes: expectations of treatment, organization of care and embarrassment. 

Expectations of treatment
All responders suffered from OAB for a longer time. They reported a variety of self-management therapies and thought it was a part of normal life. They all started seeking for help, when the symptoms were not manageable anymore. They independently stated that success of treatment was not to be completely free of incontinence, but to be able to manage their OAB-symptoms better. 

Quote:
‘Yes, it was there for many years, but it (incontinence) increased over time’

‘I hoped for everything to be normal again, when I go out, I should not worry about were the toilet is and if I will suffer from incontinence’

‘At the start, you think it is nice if all gets over. But manageable is okay for me as well’

Responders lost their trust in successful treatment, after disappointing experiences with earlier therapies. Moreover, with treatments being unsuccessful, they fall back in self-management. 

Quote:
‘What I found very difficult, I was in the process for quite some time and had different treatment modalities. Every time I hoped that it helped, but it didn’t.’

‘Yes, you get skeptical’

Organization of care. 
Responders mentioned that it was rather unpleasant seeing different nurses/physicians every time. Patients reported lack of guidance with long-term treatments, such as medication, percutaneous tibial nerve stimulation (PTNS) or intravesical BoNT-A injections. They doubted if medication should be continued lifelong, and it was not clear to them who was in charge: the general practitioner or urologist. Many patients experienced long waiting lists after they reported they needed new intravesical BoNT-A injections, which was disappointing

Quote:
‘At the first time I came for Botox injections, it was a different doctor than I spoke to before. I met him all dressed down, I think that is not done, it was so embarrassing.’

 ‘I think it is quite odd; you keep getting this medication form the pharmacy and no one decides if it is still necessary.’

Embarrassment
During the interviews, all patients told how OAB symptoms affect their daily life. Patients avoid long walks and social events.  They all used pads and at work, they needed a toilet close to their desk. Most patients experienced less problems at home, because a toilet is readily available and most family members were aware of their condition. They felt ashamed at work and some responders showed that not themselves, but their environment (e.g. colleagues) pushed them to seek help. Patients reported shame and discomfort during invasive studies like urodynamics, but they also mentioned understanding the purpose of it.

Quote
‘I was sent home from work, my employer said it could (urgency) not be any longer like this.’

‘At home, you are in control and you can go to the bathroom whenever you like. At work, it was different, when you are in meeting at you get the sign you need to go to the bathroom, you cannot just leave every time during a meeting.’

‘I endured it (urodynamics), but it was unpleasant.’

This study gave us insights in the three major themes that OAB patients experience with their treatment: expectations of treatments, organization of care and embarrassment. An important lesson is that the organization of OAB-care should be personal, because patients feel embarrassed by changing caregivers. Moreover, the organization should be flexible to be able to provide the right care at the right moment and prevent long waiting lists (e.g. with repeat intravesical BoNT-A injections). Finally, some patients become skeptical to try a new treatment after a failed therapy. This is worrisome, since this nocobo-effect negatively affects outcomes and the patient’s motivation to persevere treatment until the moment of evaluation (e.g. in case medication or PTNS).

In this qualitative study, we found that expectations of treatment, organization of care and embarrassment were the most important themes for patients in the pathway of OAB treatment. We think awareness of these themes may be helpful for clinicians to provide better care to OAB patients. A personal approach in a flexible organization with clarity over treatment effects and long-term follow up may improve the OAB-patients experience.

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Seinen AJ, Elburg R, Hollegien LM, Blanker MH, Witte LPW. The patient pathway for overactive bladder management: A quantitative analysis. Neurourol Urodyn. 2022 Jan;41(1):290-295.
Stewart WF, Van Rooyen JB, Cundiff GW, Abrams P, Herzog AR, Corey R, et al. Prevalence and burden of overactive bladder in the United States. World J Urol. 2003;20(6):327–36.

Continence 2S2 (2022) 100368
DOI: 10.1016/j.cont.2022.100368