Qualitative study

Introduction

Qualitative methods are increasingly being used to develop a thorough understanding of the views and experiences of patients involved in RCTs44 and to provide an insight into the patient experience that could be missed when using quantitative measures alone.45 It is reported that successful clinical outcome may not necessarily equate to patient satisfaction.46 Thus, it is important to gain an insight into the meaning attributed to success, satisfaction and outcomes when patients discuss their experiences. The qualitative study nested within the UNBLOCS trial explored participants’ views of their symptom experience and outcomes from the interventions. The specific aims were to investigate the participants’ experiences of:

• LUTS prior to trial participation
• the intervention
• the recovery period
• the outcome from intervention.

The qualitative study was included as a vital component of the trial to contextualise the quantitative findings and provide greater understanding of the experiential difference between the two treatment options.

Methods

Recruitment and sampling

All trial participants who had consented at baseline to being approached by a qualitative researcher were identified, and potential interviewees were purposively sampled to represent both surgical interventions, both presentations for surgery (LUTS and urinary retention) and the varied geographical areas involved in the study. Researchers contacted participants by telephone to explain the study and participants then received a specific information leaflet describing the qualitative study by post. Written informed consent was sought in advance of the interview and a convenient time was arranged for it to take place. Forty-four participants were invited to take part and 37 took part in an interview. The seven study participants who declined to take part in an interview provided reasons for this, including preferring not to be interviewed, having difficulty hearing over the telephone, having poor health and considering the interviews too personal. As study participants were already involved in the main trial, we did not experience many difficulties in making contact as current contact details were well documented. We took a proactive approach and varied the times of day to make calls as well as making repeat calls where initial contact had failed.

Interviews

Participants were interviewed on one occasion between 3 and 6 months following surgery. This was deemed a suitable time frame for the participants’ recovery to have stabilised but also for their recall of experiences to be optimised. A topic guide (see Appendix 2) was developed to explore the key qualitative aims and this was pilot tested during initial interviews and amended iteratively as interviews progressed to ensure all newly emerging elements of the patient experience were explored. The questions in the topic guide were open-ended and followed a common structure to explore all issues of relevance. Exploration of the study aims and issues newly emerging were investigated to provide a comprehensive understanding of the patients’ perspective. Participants were interviewed from all of the seven sites included in the study and only those participants from the Bristol site were interviewed face to face. Participants were purposefully sampled to ensure balance in the presenting symptoms experienced, LUTS and urinary retention, in order to reflect the breadth of indications for surgery. Interviews were conducted between July 2015 and January 2017. The interviews lasted between 20–60 minutes. Participants were recruited until data saturation was achieved and no further themes were emerging.

Analysis of the interviews

All of the interviews were audio-recorded and transcribed verbatim, for which consent had been provided. Transcripts were prepared in parallel with data collection, and analyses were conducted on an ongoing basis for emerging findings to inform the focus of future interviews. Transcripts were read and re-read for familiarisation, and a coding frame was devised to thematically analyse their content.47 Transcript data were imported into the software package NVivo 10 (QSR International, Warrington, UK) to facilitate formal electronic coding and data management. Data were coded according to the framework identifying themes and subthemes to highlight patterns within the data of relevance to the research aims. Data were continuously coded until data saturation was reached, at which point very few new codes were emerging.48 Table 35 describes the key topic areas explored during the interviews.

Results

In total, 37 participants aged between 61 and 83 years (median age 70 years) were interviewed (Table 36). Of these participants, 19 had undergone ThuVARP and 18 had undergone TURP. Of these participants, 19 had presented with urinary retention and 18 had experienced LUTS; however, at least five of those participants presenting with retention had also experienced various forms of LUTS over the years. Following the analysis of data, overarching themes were identified that reflected the participants’ experience and journey to recovery. Within these themes, perspectives on satisfaction were embedded. As the qualitative team had been unblinded to the randomised procedure, analyses were also undertaken with this knowledge in order to identify if any patterns emerged according to procedure. Figure 11 shows the overall conceptual framework devised to summarise the themes identified in the qualitative study according to stage of participants’ journey.

FIGURE 11 Conceptual framework of qualitative findings from participants in the UNBLOCS trial. (Figure not reproduced here; see the original article.)

Preoperative life

Defining lower urinary tract symptoms

The participants interviewed had presented with a range of LUTS that were typically summarised as ‘old men’s’ problems’ (Figure 12).

FIGURE 12 Participants’ descriptions of commonly occurring LUTS. (Figure not reproduced here; see the original article.)

The onset of these symptoms was described as slow and gradual by the men interviewed who had constructed LUTS as intrinsic to the ageing process. In some ways, this had allowed participants to normalise their symptoms rather than perceive them as a major concern requiring medical attention and this had continued for some years. For some men, the eventual recognition that the issues were indicative of a larger urinary problem was accompanied by a sudden escalation of symptom severity. Participants reported an overwhelming feeling that suggested a lack of control as the challenges imposed by these symptoms became increasingly problematic. This was perceived as detrimental to the quality of life of individuals as the disruptive nature of LUTS began to manifest:

It had happened gradually I suppose, over, I don’t know, 10 years or so I hadn’t really noticed . . . so I hadn’t put it down to anything other than just old age until this, until I peed a bit of blood.

Eventual urinary retention

Typically, the somewhat mild urinary symptoms had started to surface some years before patients participated in this study and, for some, other health problems would lead to the eventual deterioration of urinary function. Interestingly, most participants with retention described a significant lack of urinary issues before their urinary retention emerged, and this was repeatedly described as a ‘switch’ by one participant. This signified the rapid, unexpected nature of urinary retention:

I didn’t have any [urinary symptoms] at all other than I got up, um, one morning and just couldn’t go.

Other participants believed urinary retention to be the outcome of years spent overlooking their LUTS, although they had acknowledged this only after the onset of retention. Participants appeared unable to recall a specific pattern to this symptom, as it was largely unpredictable:

We were on a coach tour and I felt I needed to go the toilet so I went in the one on the coach and I had the feeling I wanted to go but I couldn’t pass and I felt like that all the way down to Yorkshire through the day, the following day it was no better and my stomach was all swollen.

Suddenly I’m not able to go to the toilet and even when I go there’s just the measliest dribble it’s like losing the pressure off and I mean the whole thing was definitely very different and why this suddenly happened I’m not sure.

Participants reporting urinary retention appeared eager to pass urine as they stressed that the feeling of needing to do so would become increasingly urgent. They continued to emphasise the need for ‘relief’, which was finally achieved through catheterisation. Furthermore, participants reflected on their emotional relief once they had become aware of the underlying problem. Generally, urinary retention was described as an unsettling experience, and this was largely because of the uncertainty that participants had felt when attempting to determine the cause of their pain. It was an experience largely shaped by a feeling of not knowing, which resulted in some anxiety and worry:

I was obviously concerned, you know, I thought it may have been something more sinister.

A disrupted life

The effect of urinary symptoms varied daily, and this depended on the specific symptoms with which participants presented. Travelling was particularly difficult for those participants with LUTS, as the frequent need to pass urine meant that they required regular breaks. This resulted in some participants reducing their use of public transport, and those participants who chose to drive long distances recalled that the time taken to do so was much greater because of the frequency of toilet breaks. This was embarrassing for these participants and it could also be embarrassing for their partners:

Travelling was very difficult obviously because you’re often travelling for more than an hour.

Any sort of long drive is a bit of a problem.

This inconvenience was also reflected in participants’ discussions of their experiences of being in public. All men with LUTS described a routine of pre-planning before any social outings to ensure that a toilet would be nearby. Despite this, some men continued to encounter problems, describing their fear of having urge incontinence when toilet facilities were in use. This was a source of embarrassment and it also reduced confidence, and participants detailed the way in which these issues had made them self-conscious; for example, any form of incontinence could result in visible marks on their trousers. Furthermore, those participants who used incontinence pads or catheters described the embarrassment of having to use specific cubicles that would allow them to use these without others seeing; this was frustrating and time-consuming:

You were always searching for toilets, you know having to plan things, just generally a bit of a drag, I mean it’s not great quality of life, really, when you’re doing that.

The other side of it or downside of it was me wanting to go and someone using the toilet, well a couple of times I nearly had an accident with it.

Therefore, it appeared that such urinary symptoms required a constant state of vigilance, which meant that participants were unable to enjoy many things. This resulted in a reduced quality of life, and participants continued to discuss the unpleasant nature of these symptoms and the way that these affected both their lives and their psychological well-being:

You really couldn’t do nothing properly because I had to keep running backwards and forwards to the toilet when I was doing my jobs.

It was, you know, embarrassing for my wife and embarrassing to me to explain to people. I explained it because rather than think ‘what’s wrong with this guy?’ You know, so you just handled it the best way you could.

It became in the end that I’d probably became a bit of a recluse. I didn’t want to go out.

It’s very embarrassing because you obviously had to change your trousers and you couldn’t come out and people said, well, why have you just changed your trousers? You had to tell them but luckily I’m quite thick-skinned that way.

Within the home, the time taken to complete everyday activities was also negatively affected by the frequency with which they needed to pass urine and also by incontinence, resulting in the need to wash and change far more often:

I was out in the garden for instance, I think I’d only last about half an hour and then I had to run in, washing my hands [because they] were all dirty and change your shoes and by the time I got in there I wetted myself.

The daily tiredness caused by nocturia also resulted in irritable moods and negatively affected relationships; for example, one participant discussed his decision to sleep in a separate bedroom to his partner to avoid disturbing her:

I could be up four or five times, tired. I get cross with my wife poor love, she’d say I was bad tempered.

Management of symptoms

Some of the men interviewed had discussed their initial reluctance to report their urinary symptoms and to visit the doctor. This appeared to be a prominent issue among these men, which some speculated was shaped by perceptions of manhood. Instead, they had adopted strategies to assist them as they attempted to cope with their symptoms:

I would wear the shirt outside the trousers just in case anything did happen so it would maybe help cover it up. I had to be careful where I went to and if I went to [place name] I would make sure I knew where the toilets were, that sort of thing.

I carry a little plastic pot that’s just in case. In fact that’s had to be used. It was a sort of portable loo.

If you were on a long journey you had to make sure you had the stops or take something with you to relieve yourself, I used to take a bottle with us.

As the symptoms became more severe, participants became more amenable to the idea of seeking medical guidance. Before being involved in this trial, a number of participants had sought to alleviate some symptoms by using non-surgical interventions. Some had been offered a surgical procedure at an earlier stage but had instead made the decision to explore options that were considered less invasive. Medication was believed to have helped for a short period, but these improvements were not permanent. This was considered disappointing, as were the side effects that the participants had experienced as a result of this medication:

Finasteride particularly has a dulling effect [on] one’s sexual appetite.

I was given a choice of a drug medication or the operation so we decided to go with the drug medication first of all so I went on that for about a year but it didn’t really make any difference.

Other participants found that incontinence pads were necessary to help them manage and cope with unexpected urinary leakage. Such accounts were met with some humour as the men recognised that these products were important. Although pads were accepted as useful, they were also noted to be a financial burden, which meant that participants were eager to find ways to spread this cost. An example of this was one participant cutting his pads in half and another using his wife’s sanitary products instead. Participants also highlighted that pads could be demeaning in some ways, as they were constantly conscious of any possible smells and whether or not the pads were visible. Finally, it appeared that, for these participants, surgery was considered a last option for dealing with these problematic symptoms.

Life with a catheter

A number of participants were also required to use a catheter, and perspectives differed on this form of symptom management. Generally, the catheter was considered a substantially inconvenient part of daily life as it often prevented participants from fully engaging in many aspects of life. Physically, participants felt unable to exercise, to have sex, to travel, to sleep comfortably and to socialise for extended periods of time. The catheter was uncomfortable, and in some cases it resulted in pain:

Horrendous absolutely horrendous, it was really, really traumatic, well it was just constant, you know, you were aware it was there all the time. I was unable to drive properly, it just interfered. I was having to empty this thing every couple of hours this bag you know. Ah, I hated it, absolutely hated it.

Such restrictions could be considered a psychological phenomenon in some ways, as some participants explicitly stated that actually participating in certain activities was less challenging than they had believed it would be. Nonetheless, the catheter significantly influenced the reduction in these participants’ psychological quality of life. Depression, embarrassment, fear and low self-esteem meant participants were further restricted in what they were able to do on a daily basis. This had major implications for the identity of these men, as it became evident that the catheter had become a threat to their sense of masculinity. As such, the narrative around catheter use was intrinsically linked to the notion that the catheter was far more problematic for participants as men:

I had to sort of carry these catheters around. I was due to go away four times that year and three holidays I couldn’t go on because I didn’t feel confident about, you know, anything.

It just wasn’t me.

These negative experiences were pivotal in participants’ decisions to undergo surgery, as the participants stressed that the possibility of a future without a catheter had motivated them. The extent to which these men were dissatisfied with catheters, and the resulting effect on their life, was highlighted as they depicted a sense of enthusiasm for an invasive procedure rather than proceed with their life as it was:

If I didn’t, I’d have to have a catheter for in for the rest of my life, it was enough for me . . . That was enough for me to make the decision.

The thought of the rest of my life with catheters was a bit off-putting to be honest.

Importantly, not all participants viewed their catheter as a problem. For some, it had come to symbolise relief, as it eased the pain and obstruction caused by retention. Furthermore, it allowed some participants to freely socialise and to move beyond the constraints of their home, as they were provided with a feeling of secureness, although this depended on the type of catheter used. Some found that the catheter prevented them from the embarrassment of having to frequently go to pass urine when they were socialising. It also enabled them to pass urine with ease, without interrupting any activities. However, the participants noted that in these situations they became conscious of the need to empty their catheter, which was a task that made them self-conscious, as did the visibility of the catheter:

I had a catheter fitted, that was a bit of a lifesaver for me because I actually got my life back together. Although it was an embarrassment it gave me freedom of movement of where I wanted to go and do what I wanted to do . . . My life became more tolerable, I could do what I wanted to do, if I wanted to go out I could go out and I did go out. I felt safer with the catheter and going out and doing what I wanted to do.

Discussion

This qualitative exploration of men’s lived experiences of LUTS and urinary retention revealed a number of significant themes. First and foremost, participants attempted to define their urinary symptoms. Moreover, it was revealed that participants had normalised their symptoms, believing them to be simply a feature of ageing. This has been noted elsewhere in the literature by Irwin et al.,49 who found that most participants believed their symptoms to be a normal part of ageing. This showed that men may require information about prostatic obstructions and treatment options. It also highlighted that men need to be encouraged to visit health professionals about LUTS.

Urinary symptoms appeared to play a vital role in reducing well-being as participants experienced countless disruptions to all aspects of their life, including social, leisure, physical and, in some instances, work. An awareness of the impact on partners and family was also highlighted. Gradual isolation was also identified as a consequence of ongoing symptoms.

These findings also increase our understanding of how men view their catheters, which formed the focal point of many discussions. The dissatisfaction reported by some participants about living with a catheter contrasted with previous findings by Cobussen-Boekhorst et al.,50 who reported that individuals could be satisfied with some elements of the experience; this was also borne out by the views of some participants. A number of participants interviewed identified the catheter as a symbolic barrier that restricted their functioning. However, this may have been because this was a cohort of men who had sought surgery for their symptoms and were unprepared to continue using a catheter. This view may not necessarily be shared by men who are satisfied with using a catheter to manage their symptoms.

The procedure

Undergoing surgery

Prior to discussing the experience of undergoing an invasive surgical procedure, participants discussed their reasons for requiring the operation and, in doing so, also described their personal expectations and aims. This highlighted the subjective nature of surgical success, with most hoping that their symptoms would reduce to a more controllable level. In these discussions, participants also relayed their expectations about their surgical experience and their preconceived perceptions of recovery. This was especially relevant when they were discussing the length of their hospital stay and any delays experienced when they were admitted. Some participants were sympathetic about this, referencing the strains on the NHS as a contributing factor, and appeared to construct this as a normal feature of being hospitalised for surgery. Some participants described delays between agreeing to participate in the trial and having their specific procedure. This was received negatively by a cohort of participants who were eager to improve their quality of life, and were deemed particularly problematic as they prolonged disruptive LUTS and retention and sometimes allowed the symptoms to increase in severity. Those participants using a catheter had also expressed their concerns that an extended wait could ultimately have a harmful effect on their recovery. Specifically, they speculated that relying on a catheter could result in an underactive bladder, which would require further attention and ‘training’ in the future:

I waited 10 months from when I first saw my doctor to when I finally had the operation or when I first contacted my doctor, it took 10 months and by then it was beginning to become obviously much more of a nuisance.

I shouldn’t have had the catheter in this long and I had trouble because they knew I had trouble with my prostate. I should have been took straight in for an operation straight away, no ifs, no buts.

Those participants interviewed thought that the surgical experience had begun just as they were anaesthetised. Discussions regarding this perioperative period were brief, and participants disclosed their psychological approach to being in a medical environment. Understandably, some presented a distinct aversion to hospitals, a feeling that was often strengthened when the individual lacked experience of being in that setting. This contrasted with the experiences of participants who had been hospitalised before and had undergone successful procedures, who were able to use their positive experiences to develop a pragmatic viewpoint of hospitals in general that provided them with assurance and comfort in a situation embroiled with uncertainties:

I was sort of anxious and nervous about going in to hospital because I’d been in to see various family members who’d been in to hospital, never liked it at all and never wanted to go in to hospital.

It don’t worry me hospitals, I’ve been in before . . . I mean hospitals, they really don’t worry me but it’s just that people seem to be frightened of hospitals but I don’t seem to be frightened of them for some reason. I just let them do what they want to do and that’s it.

Some discussions about preoperative fears also became evident at this stage as feelings of anxiety were heightened by an awareness of potential side effects. Perceptions and worries about surgical success were thus interlinked with the prevalence of any side effects. Although some men were confident, they had been expected to provide consent immediately before the procedure, which had resulted in them becoming somewhat nervous about the possibility of something going wrong:

I can’t really say for sure what I was concerned about. I mean it was explained that the percentage of successful surgery, you know, was quite high, that there was a possibility of complications and a damage to the urethra and scarring and various other problems but I thought, well, on balance you know the, um, the odds were quite good for a successful outcome which is why I decided to go ahead with it.

I didn’t know whether it would succeed or not . . . I read all these leaflets and they said, you know, you’ve got a 10% chance of this and a 5% chance of that and a 2% of this that and the other and I thought, um, you know, hopefully, you know, I won’t fall in any of those categories.

Those participants who were anxious before surgery preferred to undergo a general anaesthetic rather than remain conscious during the surgery. Some had expressed a preference for an epidural as this allowed them to feel far less drowsy than they would have done after a general anaesthetic; these participants believed that this reduced the recovery period in hospital as they were more likely to feel better much sooner. The epidural had also meant that the men were unable to recall any feelings of pain during that particular stage, apart from some general discomfort:

My legs started to go to stone you know just limp like, I couldn’t move them around which was fine and that was it I was awake throughout the operation. The only thing I felt the only pain I felt during the operation was from the blood pressure monitor on my left arm.

Anaesthesia also influenced what participants were able to remember about the procedure and so very few were able to estimate how long surgery had lasted. However, one participant did note that his surgical time had been much quicker than he had estimated, which resulted in him stating with certainty that he had undergone ThuVARP. In fact, this perspective was shared by all participants who felt that the surgical period had been particularly efficient regardless of the actual procedure that they had undergone. This did also raise an important point, namely that those men who were satisfied with the duration of surgery were adamant that they had undergone a ThuVARP procedure:

My operation time was very quick so when I came round, I knew which one I’d had. I’d had the laser one so I was very pleased with it because it was wonderful as far as I was concerned.

Participants discussed various elements of their inpatient care that helped make the experience much more bearable. This included the level of care that they received from members of staff, which all participants were eager to emphasise had been excellent:

The hospital [staff] were so nice and helpful and attentive, you know, a very good hospital experience.

The majority of participants interviewed who had undergone ThuVARP recalled an average of two nights’ stay, whereas those participants undergoing a TURP reported being in hospital for an average of three nights. Longer stays could often be for a number of reasons, including perioperative complications that were reported by both TURP and ThuVARP participants. Nonetheless, participants appeared to be satisfied with the length of their hospital stay when this had been much shorter than they had expected:

This one day thing it’s just amazed me because I took stuff in for 5 days or something like they put with the booklet.

Physical experience

Immediately following surgery, most participants were distinctly unaware of any physical effects from treatment as that particular period was characterised by a range of overwhelming sensations that were indicative of recovery. Participants were attached to a catheter that was visibly filled with blood, and they were in some discomfort; however, they emphasised that this had been expected and was considered a normal part of having an invasive procedure. Some participants also reported some drowsiness, which they attributed to general anaesthesia. Those participants who had received an epidural reported numbness in their legs, which lasted a few hours:

I probably spent longer recovering from the epidural than I did from the operation.

I felt pretty good actually at that point and then I went to the ward and none of it was too painful really or uncomfortable amazingly.

Nonetheless, most participants agreed that this stage was largely pain-free, and this appeared to be the case regardless of procedure. However, a few participants who had been randomised to undergo ThuVARP described some soreness and discomfort, with one man requiring morphine. This was later believed to be the result of an external complication. Similarly, one participant who underwent a TURP reported a similar experience, which was believed to be the result of an infection. In fact, any differences between experiences that had emerged at this stage were often perceived to be the result of other complications, such as unrelated illnesses and infections. In general, however, men undergoing either procedure reported very little pain and some bleeding.

It’s more pain than I could sort out with paracetamol, that’s the only way I can describe [it]. You know, it was quite bad pain but the morphine sorted it out and after I don’t know how many hours, probably about 12 hours or so, I came off the morphine and was on just normal painkillers.

I was suffering pain and discomfort even when I was discharged it was a bit uncomfortable if you understand, you know what I mean? Obviously in the lower area there, it wasn’t massive but I knew there was some pain there.

Bleeding was reported by all participants at this stage and this was visibly noticeable in their catheter. Although this had been expected, as all participants had been counselled regarding this, some did describe their surprise at the amount of blood that they had passed. The presence of blood clots was also recalled:

They did tell me after that there would be blood clots but the thing that was worrying me was the amount of old blood that I was amassing in my catheter bag.

I was generating a very rich red Bordeaux wine type blood. I was on the wash with the catheter and washed to clear out particles and just the bag would fill up with really fairly deep red. I’d been a blood donor in my young army days. I’m not fazed by the sight of blood, even my own, but I felt, oh dear, I didn’t expect this and it went on Tuesday, Wednesday.

These participants continued to describe some blood as the catheter was finally removed before they were discharged. It was also noted that the actual removal of the catheter was somewhat painful and uncomfortable. Some even specified that this was the most painful part of their entire hospital experience as they referred to the discomfort that it had caused. For some men, it was also followed by the reinsertion of the catheter, which was fairly difficult and problematic. This was usually because the participants were unable to pass a substantial amount of urine, which in itself resulted in a longer hospital stay. Despite the discomfort, the majority of participants specified that the procedure had been painless, which was a strong determinant of surgical satisfaction. This was particularly the case for the participants who had expected some pain, as it meant that their procedure exceeded their expectations in some ways:

When they took that out there was a lot of blood came away with it as well but it was the only discomfort really was removing it.

They got the catheter reinserted. Some of the instruments they used the first time I’d been hanging on to a bed for dear life but the staff nurse and the doctor were very good, but nobody could explain why it wouldn’t go in . . . I thought oh God it’s going to damage me or something but no, everything’s fine.

When I came out from the anaesthetic I had no pain, nothing really, I was surprised actually because I thought oh I’m going to have all sorts of symptoms and pains and this, that and the other but I hadn’t.

Complications

Perioperative complications reported by some participants influenced their perspective on the procedure. Such issues were recalled by six participants who had undergone ThuVARP and seven who had undergone TURP. Most commonly, these meant that the participants experienced a longer than expected hospital stay, which was somewhat disappointing for them. However, these participants also stressed that they believed that their issue was unique and not a result of their treatment, which they felt had been relatively successful:

I’m quite satisfied with the surgery, I don’t know how much of the other effects are due to that or other things but no the surgery did what it was intended to do.

A wide range of specific complications were reported and it became evident that it was in fact difficult for participants to determine whether they thought that these had been caused by the procedure or were the result of underlying health issues. Nonetheless, most participants gave the impression that these issues had emerged as a result of external issues that were unrelated to the procedure. One particular incident included the diagnosis of myasthenia gravis and two participants recalled issues relating to their blood pressure.

Other men reported how their hospital stay had been extended and this was sometimes a result of infections, which appeared to be equally prevalent among those participants undergoing TURP and those participants undergoing ThuVARP. Overall, infections were described by three participants who had undergone ThuVARP and three participants who had undergone TURP. These infections could be problematic, as one participant described how he had been given the wrong antibiotics, which increased his recovery time to much longer than anticipated. Other participants also agreed that such surgical complications resulted in a longer recovery period. One participant described how he had been re-hospitalised immediately after discharge as a result of norovirus:

Twelve hours after I’d come home, I woke up being violently sick and had diarrhoea. I think – well fairly sure it was the norovirus that I’d picked up while I’d been in hospital so for the next 3 or 4 hours I got weaker and weaker.

Discussion

Participants’ discussions about surgery were briefer than those about other elements of their journey. It became clear that some participants considered the period of being hospitalised anxiety-inducing, which had been shaped by a feeling of ‘not knowing’. Although participants did not claim that they had been uninformed, there was a sentiment of surprise regarding events that had not been expected, for example the amount of postoperative bleeding experienced. Thus, the question arises of how to fully inform an informed patient group to appropriately manage expectations. However, participants largely considered any complications to be unrelated to the type of surgery specifically and simply viewed them as unfortunate incidents.

The period waiting for surgery was cause for concern as there was a perception that symptoms might worsen. The ability to achieve a full recovery was considered to be potentially hampered. Individuals understood this is a frustration with the NHS but had concern for their own potential health decline resulting from the ‘system’.

Recovery

Urinary control

Participants reported a number of effects during the weeks following surgery, describing the ways that their bodies attempted to recover. It was during this stage that participants reported fluctuations in their urinary symptoms, which meant that they found this particular period somewhat unsatisfactory. In total, seven participants who had undergone TURP reported LUTS during recovery, and this was also reported by nine participants who had undergone ThuVARP. The specific type of LUTS differed, as did the severity. Some urgency was described by these participants; however, most commonly, participants reported different types of incontinence, which was the case irrespective of the specific procedure they had undergone. Two participants who reported urge incontinence during this period after ThuVARP also noted that this was an ongoing issue. One participant who had undergone TURP also described some urge incontinence, which was mostly prevalent during the night; however, this had subsided after a few weeks. Interestingly, all three of these participants had initially presented with urinary retention and had used a catheter preoperatively. As a result, they felt that their bladder was simply becoming accustomed to being used:

It was more a case of there was a little night incontinence with a little bit of dribbling and that, you know, where it was shutting down properly which they said was going to happen so readjusting to that.

Some participants also reported total incontinence, which was an issue for three participants who had undergone a TURP and five who had undergone ThuVARP. Two of these participants who had received a TURP and three who had received ThuVARP had initially presented with LUTS. The two participants who had undergone TURP had also experienced complications during their procedure:

When I came home the first afternoon, I put on my white jogging trousers and I thought I’ll just go to my bed . . . I woke up and I had just a puddle of urine just by my left hip, my right hip it was totally drenched and the blanket was just totally drenched. I’m straight away depressed to say the least.

It made me feel dirty. You know, that’s all I can say, you know, that’s when I started wearing these pads again.

These participants utilised and incorporated into their daily lives a range of aids to ease the negative effects of this procedure. These included pads, incontinence pants, medication and, in one case, the use of a penile clamp. However, some participants specified that they had continued to use pads for security rather than necessity. Participants noted that they continued to practise pelvic floor exercises, which for one man were uncomfortable and difficult. Some participants also noted that this iatrogenic effect had led to depression and had a detrimental effect on their self-esteem as well as their mood while interacting with others:

I was still leaking heavily into pads, I think because at that stage I’d been leaking for a year or so I was just used to leaking.

I cut them in half so that I don’t waste sort of half the pad because as I say it’s like double incontinence pads so I cut them in two so that’s two pads instead of the one and I’m using maybe a pad every couple of days.

In addition to this, two participants who had undergone ThuVARP had been catheterised throughout the recovery period, and both had experienced a problem relating to their temperature during the procedure. One of these participants stressed that his retention had been the result of a stretched bladder rather than solely due to a prostatic obstruction. As a result of this, he appeared to present a complacent attitude and to have accepted this particular outcome as his reality as it continued to be ongoing. The second participant, however, highlighted that he had contracted norovirus, which had resulted in catheterisation for two and a half weeks following his procedure. Following this, he expressed satisfaction at his ability to pass urine, which was slowly improving; however, he also noted that his urine had been somewhat cloudy during this stage:

My prostate was not particularly large. What I had was an extremely large bladder or stretched bladder where the muscles were horribly damaged due to the size of it and that’s the main problem with not being able to pee afterwards and this remains to be the same thing at the moment, but it is improving as the weeks and months go by.

Other participants saw immediate improvements; one man described how he had realised this while still in hospital when he attempted to drink a caffeinated drink. Before undergoing ThuVARP, he had restricted the type of liquids he would drink and had made the decision to drink only non-alcoholic, decaffeinated drinks. This participant no longer experienced negative effects of having drinks he enjoyed and he described his happiness at being able to drink beer for the first time in 12 years. Other participants who experienced similar immediate improvements described the surgery as ‘life-changing’, and this was again equally the case whether participants had undergone TURP or ThuVARP. It was noted that the ability to pass urine was often immediate and that the flow became stronger as the weeks passed. Furthermore, participants noted that they had been passing urine fairly frequently but during this period this subsided. Participants were elated with these changes and discussed their satisfaction at being able to pass urine in a way that reminded them of being younger:

When I come out of hospital I was going to [the] toilet as you know not as normal, more often but I was, I was quite happy with the whole thing.

They flushed it through I went to the toilet and the nurse on duty she says ‘I’m going to take your catheter out and then we’ll see what progress is’, and from then it’s been champion.

Level of pain

Although most participants had declared that the procedure itself had been painless, they described their period of recovery as somewhat painful. As a result, pain became an important feature of the recovery experience, and a range of descriptions were provided. In general, 12 out of 18 TURP participants felt some level of physical discomfort, whether this was while passing urine or general soreness throughout the day; 12 out of 19 ThuVARP participants reported similar experiences of pain. Most common was a burning sensation when passing urine, a severely unpleasant feeling that continued for some time:

Bit like peeing acid or peeing ground glass if you could imagine either sensation, that’s kind of where it sits between something very chemically hot like acid or something that’s friction. It would be like ground glass or even sand or something, you know, it’s not a natural feeling.

This intense pain caused some participants to think negatively about their surgical procedure, a view that, for some, was shaped by their lack of awareness of this particular effect. This was specifically highlighted by participants as they stressed the importance of being warned about the pain associated with recovery. A number of participants described this pain as unbearable, although in some instances it was short-lived. Participants also explained that the information they had received about pain had been from other men who had undergone TURP in the past; this highlighted the necessity of sharing valuable information from lived experiences as it enabled participants to realise that their recovery was normal:

It only lasted 3 days but that pain was excruciating. It wasn’t worth taking any tablets for because the only pain I had was when I went to the toilet and afterwards for about a couple of minutes. The burning sensation and the pain was horrendous. You say the men don’t take pain very well but that was horrendous and I wasn’t told that. OK it would have been nice to have been told that that was pretty painful.

Some participants felt that the pain was due to the insertion of catheters and surgical equipment in their urethra, with some speculating that this may have resulted in scarring. The men stated that their urethra felt tender during the recovery period and for some this feeling had continued until the point of interview. In attempting to identify and make sense of this pain, participants largely attributed it to the invasiveness of the procedure:

The catheter that they use for the operation is bigger than the normal one because it carries a camera as well as the equipment, you know, so that’s probably what’s causing the burning. It’s as if there’s urine in my urethra up to the head of the penis and it creates a stinging, quite a strong stinging, so I need to go to relieve the stinging more than the urine.

Physical complications

The participants interviewed reported that bleeding, and, in some instances, clots, when passing urine continued to be common following discharge. Although participants had been aware that this particular effect may occur, it nonetheless elicited some fear and worry. In particular, the visibility of blood and flesh had been disconcerting:

They told me that there’d be some sort of residual bleeding for a while and then it seemed to stop and then one evening, I felt the need to pee and they did warn me that a clot might come out but I wasn’t expecting it to be quite – it was sort of oh that size [comparison with a coin] and it was a bit like a bit of cloth obviously soaked in blood and that frightened me a bit.

This was considered normal by some participants who had passed blood for up to 2 weeks after their procedure. In fact, for a number of participants who had undergone ThuVARP, the bleeding had subsided within a few days. Perspectives on this did vary and it was deemed concerning largely among those participants who felt that they had not been told about it beforehand. This difference in perspective can be observed when analysing the views of two participants who had a similar experience of postoperative bleeding, only one of whom had been aware that this could happen. This suggested that participants who were more informed about their recovery were more likely to be satisfied as they were aware that the bleeding would subside:

There was a little blood and clots the like, I was passing in the first couple of weeks after the operation. I didn’t think anything of it because I’d been warned that could be the case and I had seen that in my own reading and then when it was explained to me.

I was bleeding for a couple of days after that and when I got back in touch and I said I’m bleeding, you know, and they said don’t worry that’s quite normal. She said that will clear up on its own within a couple of days which it did and then after that everything’s been fine you know the colour of the urine and everything has been normal.

Postoperative bleeding continued to dominate discussions as a number of participants noted that it had continued for an extended period, which, ultimately, had resulted in a prolonged recovery. This was especially problematic for those participants who had reported larger blood clots that were painful to pass. Although some reported ‘slithers’ of flesh when passing urine, others reported severe urinary retention due to blockages that resulted in further hospitalisations. This erratic physical effect had meant that participants were anxious and feared that it would happen again. As these repeated incidents of painful urinary retention had led to hospitalisations, the participants noted that their fears had prevented them from planning many trips, which highlighted the disruptive effect that this had on their lives. However, a combination of medication and time appeared to alleviate this problem:

I says to my wife ‘I got a lot of bleeding’, so I left it that night. The next morning I got up and I felt terrible you know because I’d worn out my stomach and it was retention so I goes to the hospital in [location] right and he says well we can’t do a lot and I felt terrible mind and I thought I could feel the blood clots . . . I couldn’t plan anything really I couldn’t plan after the holiday because you’re frightened you’re going to have another bleed.

I didn’t expect it to be so bad for me but I don’t know if everybody else had the same problems, I don’t know. I had massive bleeds about 3 weeks afterwards, then I had another bleed again 2 weeks after that and I had another bleed again 2 weeks after that, so it’s been quite an experience. I had to go into hospital to be flushed out each time, it was blood that was clotting. I had blood clots all the time.

Easing into daily life

These fears had not only disrupted the plans of these participants but also affected their ability to maintain many daily activities. In general, participants were instructed to rest for some time, which they considered frustrating. Nonetheless, they stressed the need to rest, recalling trial instructions that recommended a 2-week rest period. However, some participants noted that they had found the instructions somewhat vague as they were unable to understand what the appropriate rest period would be. Some participants were able to return to daily activities almost immediately without any major problems; in these situations, they ensured that they rested during the instructed period, although they felt that they had essentially recovered before that:

You had to take things easy and not do any strenuous exercise, but if no one had told me that if someone had said, ‘Oh you can just go back to normal as soon as you know as soon as you feel fit’, it would have been about 5 days.

For participants who had undergone ThuVARP, the time taken to return to normal daily activities, including work, was estimated to be between 4 and 5 weeks, similar to that reported by those patients who had undergone TURP. Therefore, it appeared that for most participants, this time depended on their subjective preparedness to continue with specific activities rather on than which surgical procedure they had received. During this period, participants avoided a number of physical and leisure activities, including sport, long walks, driving and sexual intercourse. Some noted that they were able to participate in light physical activities within 2–3 weeks, usually walking the dog or shopping. More strenuous activities, such as physical exercise and sport, took much longer, and some men noted during their interviews that they had only begun to play golf again between 3 and 6 months following the procedure:

I still wanted to do my own shopping but I could hardly like walk. I’m still stubborn like that.

I do weight training and sort of gym work and I would say after 4 or 5 weeks, say 5 weeks, I was back to normal.

Return to daily life was delayed for participants who experienced incontinence during recovery and they described how this led to depression. Interviews revealed that this was one of the most important phases in reshaping and shifting perspectives on satisfaction. It was during this period that participants reported the profound effect that their fluctuating physical symptoms had on their daily life as they struggled to adapt to the restrictions that their surgery had imposed. Some who were catheterised described discomfort, and it became apparent that, overall, this period was distinctly characterised by psychological difficulties, as feelings of fear, anxiety and depression dominated their accounts:

I thought once I was discharged I was going to be fine you know but I was quite rough. It must have been a couple of months, you know, I couldn’t get myself together like. Not very nice it made me quite depressed actually and I don’t usually get like that.

Detrimental to an extent because you know I didn’t do any gardening and I didn’t do much walking about for up to 6 weeks after the operation so I tended to put on weight.

I mean I probably didn’t go out so much when I was at the beginning of the recovery. I gradually did, we’ll go anywhere now it’s not a problem.

Discussion

This theme illustrated the importance of recovery in shaping participants’ perspectives of their surgical procedure overall. During this stage, some participants continued to experience many fluctuating symptoms that placed them in ‘limbo’ and had some implications for their sense of self. These participants reported a range of negative urinary symptoms, including a frequent need to pass urine, urgency and incontinence. Further to this, bleeding and retention due to clots and pain when attempting to pass urine were commonly noted by participants regardless of procedure. In some instances, these issues led to limited function, which, in turn, caused participants to question and re-evaluate their social roles as they became somewhat reliant on the help of others, which some seemed to resent.

A range of factors became apparent during these discussions that revealed key facets of patient dissatisfaction that were specific to both procedures. This was particularly prevalent when participants described their period of recovery as many shifting determinants of dissatisfaction were embedded within participants’ journeys. For example, the subjective recollections of blood loss, pain and postoperative LUTS and urinary retention were perceived as problematic and upsetting, especially when they were viewed as prolonging their recovery. Some participants had pursued further information about the clinical aspects of their recovery, which had reassured them that their recovery was ‘normal’. However, others felt that this information was provided only postoperatively, which led to some dissatisfaction with the overall health service. Although knowledge of potentially negative effects enabled participants to psychologically cope rather than endure a feeling of uncertainty, participants emphasised that this had not made the lived experience any easier. These factors were generally viewed negatively and resulted in feelings of regret for a period following surgery as they encountered a range of difficulties and reported limitations to the activities that they were able to engage in.

Despite the perceived negative elements of their recovery, most participants were satisfied with the efficiency with which they were able to return to their normal daily activities. Factors that resulted in patient satisfaction included the efficiency of the procedure, a lack of pain, swift improvements to quality of life, alleviation of symptoms and diminished catheter dependency. Some participants had in fact felt that their symptoms had improved immediately as they detailed their satisfaction at being able to pass urine with a strong flow. Moreover, they had recognised that their ability to pass urine would generally improve and highlighted that this had indeed appeared to be the case. Recovery was essentially shorter for these participants than for others, as they described the way in which they had felt able to participate in many activities much sooner than they had expected. Others considered that previous catheter use would result in a prolonged recovery; this did appear to be the case for most as they described their need to ’re-train’ their bladders. This was problematic for those participants for whom urinary symptoms were just one of a list of other, overlapping, health issues; some discussed other life concerns that had interfered with their recovery, including the death of a partner and other operations. Ultimately, these external elements had also affected their perceptions of recovery.

Outcome of surgery

Urinary changes

During the interviews, participants were able to identify the impact that their procedure had had on their lives by discussing its eventual effect on their pre-trial symptoms. Most participants emphasised an absence of urinary symptoms at the point of interview; however, those participants who had some symptomatic issues stressed their belief that this would improve. In general, those participants who had presented with LUTS reported eventually regaining control over their bladder and urinary functions, with many specifying that they had experienced improvements to their flow rate, a reduction in nocturia and frequency and a distinct lack of incontinence. Such improvements were evident across all interviews, as men undergoing either procedure expressed their satisfaction and amazement at the changes:

The beauty of it is that I’m able to empty my bladder in one go whereas before I couldn’t sometimes. I’d have to have a wee and then 10 minutes I’d have to have another one because I couldn’t empty it but now I can.

For those men who had undergone TURP while presenting with LUTS, it was reported that their urinary symptoms gradually subsided after a period of 2–3 weeks. During this period, participants reported some urgency and, as previously noted, some suffered from incontinence. However, during their interviews participants highlighted how this had drastically improved, and this was largely attributed to general recovery and a combination of pelvic floor exercises, rest and medication. At the point of interview, it was agreed that participants were essentially free of bothersome daytime LUTS, although it was noted that they continued to pass urine during the night. However, the frequency with which this occurred had reduced:

He stressed to me, pelvic floor muscle exercises and put me on Vesicare which has worked wonders. My bladder control has gone back to like it was when I was a young man.

Similarly, some participants who had presented with LUTS and had been randomised to ThuVARP discussed their immediate ability to pass urine without difficulty and noted that their urinary frequency had reduced within 1 month. This immediate improvement was also highlighted by one participant who had been catheterised for his incontinence prior to surgery and discussed his satisfaction at regaining control over his bladder and ability to pass urine. For these men, this ability was largely improving:

When the consultant came round or whoever it was that came round looked at the bag and then said right we can take the catheter out . . . I was blown away when I heard that. It’s fantastic now. When we go out I don’t have the inconvenience. I can last for longer now than I’ve lasted for years I think.

I came home, I was catheterising away every 4 hours maybe and that was working fine there was no problems with that whatsoever and then I suddenly found that I was starting to pee a little bit on my own and that was a maybe an eggcup full or half a cup full.

Those participants who had experienced urinary retention and were subsequently catheterised prior to surgery presented a range of postoperative experiences. Most men who had been randomised to ThuVARP reported immediate improvements; however, one participant did describe a continuation of the urinary frequency and nocturia that he had experienced before surgery. Another two participants discussed their incontinence during their interviews, with one expressing a stronger dissatisfaction with that particular outcome:

I’m still wearing these pants. I was three a day but I now have an appliance which is basically a clamp which I put on my penis to stop it dripping so one pair of pants is security gets me through the day but I’m still leaking. I’m still doing my five-a-day pelvic floor. It is better but it’s a very slow process.

Positive outcomes were also highlighted by men who had undergone TURP for their urinary retention as some were delighted with the symptomatic outcome. These men had found that any initial LUTS had reduced and they were eager to recommend the procedure. However, other men noted that they experienced some hesitancy, frequency and urgency. This was thought to be a result of their ongoing attempts to regain control over a bladder that had become reliant on a catheter:

I’m pretty pleased with what I’ve had done so I would recommend it to any one of my friends.

Almost normal, apart from the occasional times when there’s a little bit of a problem starting or it’s hesitant but that’s not a great problem.

Interestingly, some participants noted that their recovery period had been fraught with a number of urinary symptoms that had resulted in dissatisfaction. However, the eventual improvements and reduction in urinary-related issues caused participants to change their initial perspective on their procedure. In doing so, participants highlighted the fragmented elements of patient satisfaction, as they had been dissatisfied with components of their experience and yet extremely satisfied with their outcome. As such, it became apparent that the surgical procedure was perceived as separate from the overall experience, and discussions on satisfaction reflected this:

Satisfied with the operation, just not satisfied with the after-effects.

I’m happy with the outcome now, yeah. It seemed to take a long time to get right.

Sexual effect

Some participants reported sexual changes that they thought had resulted from the procedure. This outcome was reported broadly across both arms as participants disclosed their sexual dysfunction and sexual discomfort. Perspectives on these changes varied as participants recognised that they had been aware of potential sexual problems prior to participation and felt that this was simply the cost of having an otherwise beneficial procedure. Nonetheless, it was deemed a concerning after-effect, as participants appeared to describe some regret. Furthermore, age appeared to play a key role in shaping perceptions of this negative effect; older participants noted that sexual intercourse was no longer an important feature of their lives:

I wish it wasn’t like that [limitation to sexual matters] but if it’s the price to pay for the other issues I’d pay that price.

We’re both in our middle 70s and it doesn’t worry me that much I’ve had my share so [laughs] I had four children so sometimes it’s frustrating but it don’t worry me that much.

Ejaculatory issues were described by many participants, as they began to experience retrograde ejaculation following surgery. However, some participants said that this had been an issue prior to participation and perceived it to be a result of medication they had taken previously for LUTS. Participants also provided descriptive accounts of visible changes in their semen and speculated that they were no longer producing sperm:

What comes out isn’t fully loaded with sperm so you can’t in theory have children but as I said at 61 already having done that I don’t feel the sudden need to do it now. There’s no effect at all in terms of the social side of what you’re referring to.

I do actually ejaculate but [unsure] whether it’s semen that I’m ejaculating because it’s quite a clear fluid.

I was taking Tamsulosin before. I think I had a partial sort of retrograde ejaculation but now it’s total so that means, you know, it’s not as good as it was.

Two participants had also reported erectile dysfunction, which was particularly concerning, and expressed a desire to seek treatment. Participants had in fact felt that sexual issues had been sidelined as they noted that these concerns had not been discussed before the interview and appeared to welcome the opportunity to do so. For some participants, severe discomfort and pain during their recovery had affected their participation in sexual activities. Furthermore, passing blood and clots had resulted in fear and anxiety surrounding sex, which was evident in some accounts:

That’s almost non-existent because that’s another problem I’ve got and that’s keeping an erection so that hasn’t improved. I don’t know if it’s got worse but that hasn’t really changed no and I don’t know what I can do about that, I’ve been living with that.

You’re frightened, after that first bleed you think well I can’t because or else I’ll bleed . . . I still get the urge but there’s just that feeling in the back of your mind saying that you might have a bleed.

Psychosocial impact

Among the participants interviewed, it became apparent that their pre-trial symptoms had had a detrimental effect on the quality of their life. As a result, a key aim of all participants had been to improve their daily lives as it had become evident that they had hoped for a positive psychosocial effect from their particular procedure. The majority of participants felt that this had been achieved, discussing the impact of regaining control over their urinary function; for them, surgery had been ‘life-changing’. They described how relieved they were that their symptoms no longer had control over their lives:

I was coping with it before, it’s just I don’t have to think about it now. I suppose that’s the difference it’s made.

Mentally it was a weight lifted off my mind. I was going back to normality, what other people did.

It feels a lot better, I haven’t had any problems. I can go to the toilet and I feel fine and to me from using the self-catheter four or five times a day to going on my own is wonderful so all in all that’s been a success it has to me. I can start planning, start my life again.

Participants discussed their delight at being able to participate in activities that had been impossible prior to surgery as they recalled being able to partake in long journeys, family holidays and sport with ease and without the inconvenience of stopping to pass urine. This had allowed them to regain the confidence that had been severely hindered by their urinary symptoms. They specified that the anxiety that had previously engulfed their thoughts before socialising was no longer a concern and, importantly, they were now happy:

I don’t have to worry about going to the toilet every 10 minutes, you know. I can go out and I can enjoy myself without worrying about where the next toilet is and stuff like that.

It was like I had another 10 years put on my life.

My happiness is like I am a new person . . . I can smile again.

I have a life back. I’ve probably gone back almost 20 years ago. I’m a different person altogether.

This reflected a process of psychological rejuvenation as participants repeatedly asserted that the surgery and its subsequent positive outcome had allowed them to regain elements of their youth. Some participants specified that they felt much younger and others noted that it had changed their entire outlook on life. As such, the difference that the surgery had made to their lives was visible and the participants noted that it had been a ‘miracle’. In fact, this level of satisfaction was also shared by the participants who had described their recovery period as problematic, as they noted that the eventual outcome meant that the challenges had been worth it:

In the first questionnaire I filled out and sent off I put that that I wasn’t very satisfied you know but at that moment that’s how I was feeling. But now when I look back I think why was I getting like that?

Almost all participants suggested that they would recommend the procedure and those participants who experienced a less than pleasing outcome felt that this was a result of external issues rather than the surgery. For these participants the effect had been unique and they speculated that this would not be the case for others. It was also highlighted that the surgery had in fact dealt with the initial symptoms, although it was believed to have resulted in new symptoms. For some men, this had resulted in depressive feelings as their lives were now restricted and dominated by urinary symptoms. However, these particular participants also described their hope and optimism that this would improve with time and as such appeared to construct their present symptoms as part of a prolonged recovery process.

Discussion

This theme aimed to provide a greater insight into the overall outcome from TURP and ThuVARP on participants who had presented with LUTS and urinary retention. Although all participants agreed that the surgery had successfully treated their prostatic obstruction, some also revealed a number of new urinary symptoms and some sexual dysfunction. The impact on urinary symptoms varied greatly and appeared to be dependent on participants’ initial symptoms. Some of those participants who had been catheterised before their surgery revealed that their recovery was ongoing as they continued to regain control over their bladder while suffering from incontinence.

The interview findings revealed that surgery had a specific effect on sexual functioning. However, it was also found that most participants had experienced some form of sexual issue before participating in this trial. This was often perceived to have been due to previous drug interventions that were thought to have failed to treat their urinary symptoms. This particular effect could have implications for participants’ perceptions of masculine identity as they often drew on notions of manhood while discussing the barriers that they encountered. When discussing the improvements to their psychological well-being following their satisfactory procedure, participants stressed that it had enabled them to feel confident and young again.

It also appeared that successful procedures that had reduced symptoms had also altered participants’ perceptions of their own bodies. Their initial LUTS and urinary retention had pushed bladder and urinary functioning to the fore of their consciousness and the final symptomatic outcomes meant that this heightened awareness had subsided along with their symptoms. This had reduced the anxious feelings that had been so prevalent. This can perhaps be interpreted using phenomenological theories relating to the concept of embodiment. In particular, the concept of the ‘lived body’, as proposed by Gadow,51 could be applicable, as it suggests that a conscious lack of awareness of one’s body or body parts results in improvements in psychological well-being.

Discussion

Strengths and limitations of the qualitative study

The fact that the participants interviewed were already involved in a surgical trial meant that we were sampling from a select group who may have had particular views, given their willingness to take part in a RCT. In addition, we interviewed only those men who had consented to participate, which may have meant that we interviewed participants with a particularly positive perspective. However, we did collect both positive and negative accounts, and the reasons for non-participation do not suggest a particular skew towards the interviewed population.

Interviews were conducted at only one time point and largely when symptoms were expected to have resolved, which may have resulted in recall bias. If we had interviewed participants during the immediate postoperative period, which appears to capture the most negative experiences overall, we might have gathered more accurate accounts of that time without the resulting improvements that have led to more positive reflections. Descriptions were fairly balanced and certainly included negative aspects, which suggests that the disadvantages of the pragmatic approach taken to reduce participant burden by interviewing once only is mitigated by the evidence in the data obtained.

The majority of interviews were conducted over the telephone rather than in person, but there is no evidence to suggest that this influenced participants’ candour. It is recognised that robustly conducted telephone interviews can be as effective as face-to-face interviews, and using the telephone enabled participants at all of the study sites to be included and allowed regional perspectives to be reflected.52

Although approximately half of participants had experienced LUTS that may have been evident for a number of years, a strength of the study from a qualitative perspective is that patients were included who presented with urinary retention, which in some cases had a very sudden onset. The participants with urinary retention included those men who had been dismissing their symptoms for some time but now found themselves in a health-seeking situation because of their circumstances, as well as those men who had not had reason to seek help previously. The opportunity to interview these participants would not often arise and this has helped to investigate opinions related to health-seeking, for example that LUTS are ‘just part of the ageing process’.

Summary of the findings and implications

A general finding of importance is that male LUTS continue to be viewed as a ‘normal part of ageing’, which can prevent individuals from seeking treatment that could significantly benefit their lives. Health promotion activities and engagement with this population is required to alter this perspective and facilitate active treatment-seeking behaviours.

Interviews confirmed that both procedures resulted in a fairly equal patient experience, with participants reporting similar journeys of recovery and outcomes. Descriptions of a period of uncertainty that preceded satisfactory outcomes were also common. The few differences that did emerge were largely perceived as individual, unique experiences rather than representative of the surgical procedure, and this was particularly the case for participants who reported complications during the perioperative stage. These complications were thought to have had a negative impact on recovery, as some reported a prolonged period of recovery that resulted in some feelings of depression. During this stage, some participants had experienced urinary symptoms, bleeding and pain, although these were thought to have subsided by the time of the interview. In general, most participants were able to continue with their daily lives within 1 month, although some had begun to slowly reintroduce light exercise and work into their lives much earlier.

A number of participants also reported urinary retention due to clots and this was similarly noted by those undergoing either procedure. For other participants, this period was characterised by a range of LUTS that essentially delayed their return to normality. Those men who had initially presented with urinary retention appeared more likely to have experienced some incontinence during this period and discussed their need for medication and pelvic-floor exercises, which helped them to regain bladder control. These symptoms were thought to be due to previous catheter use as participants speculated that their bladder had poorer function. This was supported by the fact that some participants who had been catheterised previously for incontinence also experienced LUTS. Most found that these problems did resolve, and others hoped there would be a gradual improvement. Concerns about the length of time waiting for surgery were also linked to perceptions of the potential for full symptom resolution.

In general, almost all participants were satisfied with the final outcome as both procedures had essentially met their aims. The participants had hoped and expected to have their initial symptoms treated and, as this had happened, most discussed their delight at the improvements in their quality of life. Those participants who were less satisfied with their eventual outcome noted that they were satisfied with the procedure itself, but that outcome and, indeed, recovery had been trying. Furthermore, they described a lack of knowledge about specific side effects and suggested that the level of information they had received played a large role in shaping their feelings of satisfaction. However, it must be stressed that all participants had received the same information about the trial and any potential outcomes, yet some had described themselves as less informed. Although clinical interactions contributed to this, the personal characteristics of patients must also play a large role. Some appeared more receptive to the information and to actively pursue additional information than others. It is therefore important that clinicians and health-care staff ensure that all participants receive accurate and good-quality information that can ultimately enhance their experience.

As the majority of participants did specify that their expectations regarding the outcome of surgery had been met, most appeared generally satisfied with the outcome and the extent to which their initial symptoms had alleviated. The subjective determinants of dissatisfaction reported during recovery were particularly informative as they revealed factors that affect perceptions of outcome. Differences between the procedures in terms of blood loss, pain, large blood clots, and LUTS and retention are aspects that may influence individuals when they are considering potential treatment options, and will provide a further perspective on the quantitative findings. These symptoms were reported to contribute to a prolonged recovery, which was also considered to have had a negative influence on outcome.

Participants also stressed their need for further information, and the findings of this study will be key to strengthening the advice and guidance provided to future patients. These findings also support Burgio et al.,53 who highlighted the importance of preoperative counselling as a determinant of satisfaction for those men undergoing stress incontinence surgery. It was noted that this would enable patients to set realistic expectations about surgical outcomes, which could ultimately minimise their postoperative impact.

The need to be aware of participants’ concerns about sexual matters when undergoing these procedures was highlighted. Participants raised concerns about their ability to conduct a satisfactory sex life, which were perceived to be related to, and to predate, surgery. The opportunity to discuss this during the patient journey is important and would provide an opportunity to signpost patients to treatment if desired. During interviews, participants commented that this was the first time they had been asked and that they were glad to have the opportunity to discuss these personal issues, something that has implications for practice going forward.

These findings extend on other studies that have explored determinants of patient satisfaction and apply them specifically to surgical interventions for BPO. Previously it has been reported following joint replacement surgery that overall satisfaction has been determined by meeting expectations, achieving pain relief, and a satisfactory hospital experience.54 This was indeed also found to be key among this cohort as participants described resolution of symptoms and the procedure experience as pivotal to their satisfaction.

This study has provided unique insight into the lived experiences of men undergoing TURP or ThuVARP for the treatment of LUTS or urinary retention. This will provide a deeper understanding of the patient perspective when interpreting the quantitative trial data and when counselling patients in clinical practice. The ability to counsel future patients using insight from previous patients will help men to understand the patient journey and help inform decision-making. Most participants were ultimately satisfied with their surgical outcome following the recovery period and would appreciate robust information about the procedures and their recovery, along with active enquiry regarding any concerns with their sexual matters.