Qualitative study

Introduction

Qualitative methods are an increasingly important component of RCTs in health care,43 as they are able to bring ‘in situ’ insight into the processes and dynamics of an intervention and its delivery by capturing the views and experiences of patients and clinicians over the course of a trial. The findings from qualitative studies can help make sense of quantitatively measured outcomes;44 can ascertain otherwise unexplored, but important, dimensions of impact; and can support clinical recommendations and implementation plans.45 The qualitative component embedded within the TRIUMPH trial set out to explore patients’ views and experiences of:

• LUTS (symptoms, treatment and management) prior to the TRIUMPH trial
• the intervention and take-up of the structured self-help guidance
• outcomes from the intervention/usual care.

In addition, the qualitative study incorporated the views and experiences of clinicians, including nurses who presented the trial self-help material to intervention arm participants, and GPs from whose populations the TRIUMPH trial participants were recruited, and in whose hands ‘usual care’ continued.

The qualitative study set out to contextualise the quantitative findings; provide greater understanding of the experiences of those who were and those who were not offered self-help guidance; offer reflections on the intervention and its delivery from the perspective of clinicians as well as patients; and report on the current experiences of men with LUTS in relation to primary care and self-management (the context within which any recommendations for the improved care of men with LUTS must be situated). Alongside being of relevance to our understanding of the trial outcomes, this work provides insights into NHS primary care and treatment of men with LUTS, and the status, salience and use of self-help advice and guidance in routine practice.

Methods

Recruitment and sampling

All trial participants who had consented at baseline to being approached by a qualitative researcher were identified. Interviewees were purposively sampled to include:

• men in both the intervention and the control arms of the trial (those who did and those who did not receive TRIUMPH trial self-help guidance, anticipating n = 30 in the intervention arm and n = 15 in the control arm) and included within this sample:
  • men from across the spectrum of participating general practice sites (including a maximally diverse range of practice sites)
  • men with a diversity of LUTS experiences (including men with mild, men with moderate and men with severe IPSS, and those with various kinds of LUTS, including ‘post-micturition dribble’, ‘frequency’, ‘urgency’, ‘nocturia’ and ‘leakage’ issues)
  • men of different ages (including older and younger men with LUTS).

In addition, over the course of the trial, purposive sampling attended to the lack of diversity in a majority ‘white’ and ‘married’ sample by seeking to include, in addition to the primary sampling framework, men who were:

• ethnic minorities, as well as white men
• single, as well as men who were married, civil partnered, divorced, separated or widowed.

Selected potential participants were sent an information leaflet describing the qualitative study by post/e-mail (according to their preference) and this was followed up with a telephone call, providing an opportunity to discuss the qualitative study. Telephone contact was attempted three times, and answer machine messages were left when possible. Those who were reached by telephone but declined the invitation to an interview gave the following reasons: recent bereavement, ill health, work abroad and holidays; those remaining did not respond to answer machine messages and could not be reached at the times they were called. For willing participants, a convenient time was arranged for the interview to take place, either in person or by telephone, with telephone interviews offered as per the research interviewer’s preference. Full consent to participate was recorded at the outset of each interview.

The majority of qualitative study men were interviewed twice, first at baseline (in the weeks following receipt of the intervention guidance for those in the intervention arm, and in the weeks following their consent to participation for those in the control arm) then later during follow-up phase of the trial (before the end of the 12-month follow-up period, and between 3 and 9 months after baseline interviews). In addition, a number of lone ‘feasibility’ interviews were conducted with men in the intervention arm only, to explore in greater depth participants’ views and experiences of the intervention delivery and the structured self-help guidance. Clinicians were also interviewed, following invitations sent by e-mail to relevant GPs, nurses and HCAs at all participating general practices (‘relevant’ included TRIUMPH trial site principal investigators, clinicians with dedicated research roles within the practice, those with special interests in LUTS/urology who were also part of wider TRIUMPH trial research team and those engaged in delivering the intervention). Clinician interviews included nurses/HCAs who delivered the intervention to men at different general practices, and GPs from participating sites (both intervention and usual-care sites). Furthermore, at the outset of the study, a small sample of men who declined to take part in the trial, but who consented to a brief telephone interview to discuss their reasons for declining, were interviewed to better understand some of the reasons why men chose not to take part.

Interviews

Comprehensive interview guides (see Report Supplementary Material 2–6) were developed for the baseline, follow-up, feasibility, clinician and decliner interviews, to explore the key qualitative areas of interest. Questions included in the topic guide were open-ended, and included follow-up prompts, to support a thorough exploration of relevant issues. Topic guides were used fluidly: interviews typically covered all the areas of interest indicated on the guide, but emphasis on aspects of topics shifted according to the experiences of the participant, and over the course of the study as interviews progressed, to ensure that emerging themes were explored adequately. Participants were encouraged to describe and reflect freely on their experiences in relevant areas, and specific views, comments and experiences of interest were interrogated more deeply. All but one participant (who chose to have a face-to-face interview) were interviewed by telephone (men were offered face-to-face interviews if preferred; for the most part, men expressed ease with the convenience of a telephone interview, and for some the relative anonymity of a telephone interview was also a factor). Interviews typically lasted 60–90 minutes at baseline and 20–60 minutes at follow-up; clinician interviews typically lasted 45–90 minutes and brief ‘decliner’ interviews lasted around 10–15 minutes. Interviews were conducted between December 2018 and February 2020. Participants were recruited to the point of data saturation at which no further substantive themes were emerging in relation to the aims and objectives of the qualitative study.

Analysis of the interviews

All of the interviews were audio-recorded and transcribed verbatim. Transcripts were prepared concurrently, as interviews continued, with analyses conducted in parallel, so that emerging themes could inform the focus of ongoing interviews. Transcripts were read and re-read for familiarisation, codes devised and themes developed. Transcript data were imported into the software package NVivo 12 (QSR International, Warrington, UK) to support formal electronic coding and data management. Data were coded according to coding frames, with emerging themes and patterns of relevance to the study aims drawn out and described as the data built up. Data were continuously coded until few, if any, new codes, themes or subthemes of relevance were found.

Results

Participants

We carried out a total of 115 interviews: 91 with participants, 14 with clinicians and 10 brief interviews with men who had declined to take part in the trial. Early in the trial we interviewed 45 men at baseline (30 men in intervention arm, 15 men in the control arm) and carried out a further 13 one-off feasibility interviews. Later we carried out 33 follow-up interviews with 22 previously interviewed men in the intervention arm and 10 previously interviewed men in the control arm. Participants interviewed in the early stage of their participation in the trial were typically interviewed 0–3 months after joining the trial (within the first weeks of receiving the TRIUMPH trial guide for those in the intervention arm, but allowing for practice variation in the time between initial recruitment and intervention delivery, as well as time to make telephone contact and arrange qualitative interviews). Follow-up interviews typically took place between 3 and 9 months after the initial early-stage baseline interview (as participants neared the completion of their 12-month involvement in the trial, while allowing for inclusion in the qualitative component of the study of those who joined the main trial in later waves of recruitment, to capture patients from a maximally diverse range of geographic regions and practices). Purposive sampling, to ensure balance, provided a sample made up of men who:

• had IPSS ranging from 3 to 31, with a mean of 14.84 according to baseline measures
• had a range of LUTS experiences, including men with more severe problems (higher scores, of ≥ 3 out of 5) relating specifically to an urgent need to urinate (23 men), urinary leakage (12 men), a frequent need to urinate (31 men) and nocturia (25 men), and men experiencing post-micturition dribble (22 men)
• ranged in age from 40 to 84 years, with a mean age of 64.95 years
• were from a diverse range of general practice sites, including 27 general practices (with 17 intervention arm and 10 usual-care arm general practice sites covered by the sample).

The cohort comprised four men who identified as black, Asian or mixed race and 54 who identified as white. Seven men were single, four widowed, three divorced, four civil partnered and 38 married. Tables 36 and 37 set out participant characteristics for the men who took part in the TRIUMPH qualitative study (including men who declined to take part in the trial) and clinicians, respectively. Personal information, including biographic and LUTS related, was not collected or stored for ‘declining’ men, 10 of whom were interviewed.

Conceptual framework/themes

Major themes and a conceptual framework (Figure 8) were developed through a process of recursive data analysis. The qualitative team were unmasked (men in the intervention/usual-care arms knew that they had/had not received the intervention; however, men in the usual-care arm did not know and were not informed about the content of the intervention/booklet). Men’s views, experiences and outcomes were linked to their intervention/usual-care arm status throughout the interview and analytic process.

FIGURE 8 Conceptual framework/themes. (Figure not reproduced here; see the original article.)

At its broadest level, the conceptual framework (see Figure 8) for those in the intervention arm who were receptive to, and engaged with, the guidance on offer (which was a striking majority of those interviewed) is a heartening journey. There was a shift from pre-trial/usual-care experiences of dispirited coping or resigned tolerance (living in the shadow of disruptive, annoying, anxiety-provoking, embarrassing, stigmatising, age- and decline-associated symptoms) to post-intervention enthused self-management, increased understanding, therapeutic empowerment, renewed efforts and symptom improvement.

For men in the intervention arm, whether the specific changes reported were minimal or wide-ranging, the overwhelming sentiment was upbeat; men described relief and gratitude at being better-informed, enthusiastically reported symptom-related benefits and said that ‘all men should have this guidance’.

Receptiveness to, and appetite for, the intervention was linked to prior LUTS experiences and tolerance of symptoms, prior satisfaction with the outcomes of primary care, personal factors (e.g. character, lifestyle) and experiences of the intervention (particularly men’s experiences of the relevance, novelty, practicality and acceptability of the booklet content). Understandably, for these reasons, a minority of men were not receptive to the guidance, reporting no change in their behaviours.

For men in both the intervention and the usual-care arms, the degree of prior dispiritedness, coping, resignation and tolerance was linked to (1) LUTS experiences (kinds and experiences of LUTS), (2) experiences of primary care (the decision to visit a GP, GP responses and levels of satisfaction with the outcomes of primary care support, the drivers and especially inhibitors of further GP visits) and (3) personal factors.

Control group men continued to live in the shadow of dispiriting symptoms, eager for support and guidance, but commonly inhibited from returning to their GP. These themes and components of the conceptual framework are explored in more detail below.

Theme 1a: kinds of lower urinary tract symptoms

Common to all three groups of study men (those in the intervention arm, feasibility group (FG) and usual-care arm) was a familiar constellation of kinds (and experiences, see below) of LUTS, broadly in line with current clinical depictions of LUTS among men7,46 (see Figure 8, ‘1a. Kinds of LUTS’, and Appendix 3 for further accounts).

Nocturia

Many men opened their account of LUTS onset with a description of the emergence of increasingly regular (most nights or every night) and multiple (more than once or many times) night-waking to urinate (clinically termed nocturia). Many stated that this precipitated their first LUTS-related GP visit, or, more accurately for some, their first ‘in passing’ LUTS-related question to a GP:

… the main problem I have encountered is having to get up in and being disturbed repeatedly in the night to pee and it was sort of at least three times a night.

Beyond nocturia, men’s symptoms fell into clinically recognised clusters (nocturia was experienced within both symptom clusters; urgency and frequency were also prevalent across clusters, but associated distinctly with either difficulty voiding or difficulty holding/risk of leakage).

‘Voiding’ issues

These included a frequent, frustrating and, for some, painful urge to urinate accompanied by slow or weak flow, difficulty initiating micturition, a sense of incomplete emptying of the bladder and (more rarely) signs of and concerns about, or experience of, acute retention:

… what I found as it progressed it’s not possible to urinate to order, in effect, and you can be going into theatre and you know that you need to [urinate] … and you’re going to be sitting in a chair for 2 and half hours, but you can’t do anything and so you end up sitting uncomfortably. You want to, but you can’t do anything …

Yeah, I had to go down the [hospital name] in the middle of the night and they kept me in and they emptied it [by catheterisation for a week], ’cause I just could not get any out. But that’s only happened once.

‘Storage’ issues

This included a frequent (daytime and/or night-time) need to urinate, coupled with urgency, loss of control and leakage, and daytime and/or (much more rarely) night-time incontinence, and was sometimes diagnosed as ‘overactive bladder syndrome’ or a very frequent urge to urinate through the day and night (but without slow- or intermittent-flow issues):

One thing I would say it has made a difference to my life is the fact that I’ve been getting leakage and so where in the past I would have said I’m very keen to go the loo but I will put it off until it’s convenient, but then [now] I get leakage before urinating if I do that.

Alongside these clusters, some men described additional, familiar post-micturition issues, which are discussed in the following sections.

Post-voiding dribble

Some men gave accounts of a small wet patch, often once dressed, just after dressing following urinating:

Don’t know, sort of late 40s, I suppose, I started noticing this is not right, I started getting worried about it and the symptoms was go to the toilet and then give it a shake and let it all drip out, do myself up, get back to my seat and en route back to my seat or sit on the settee some more would come out.

Feeling of incomplete emptying

Some men reported feeling that the bladder retains some urine or cannot be successfully emptied, leaving the unsettling feeling of still needing to urinate; indeed, large residual urine volumes can often be found in the bladder in urological assessments of urinary function:

What I do get is frustration that I haven’t done it, I haven’t emptied, because I want to get on.

… so what happens is when I’ve gone then there’s always some left really.

Recurrent urinary tract infection

Aetiologically, and in terms of treatment options, UTIs are a separate concern, and not the focus of this study, but, for some men, recurrent UTIs were nonetheless described as part of, or interacting with, their broader LUTS experience, or sense of LUTS onset. Because these experiences are relevant to self-help guidance responses, they are included:

Well when I empty my bladder it doesn’t fully empty, so I’m getting water retention and I think it’s because of that which has been causing a lot of the infections …

Diffuse/multiple symptoms

Some men experience a diffuse range of symptoms that stretch across the spectrum of clusters and symptoms and may also include UTIs:

I was aware that passing urine wasn’t as speedy as it might be, or as full a force as it might be. Also … routinely I get up twice in the night to go to the loo. That has been the case for a long time … urine wasn’t getting discharged as quickly as it might, which was leading to the likelihood of infection [UTI] being more prevalent … [and] More recently … a greater urgency, I suppose, when I feel I need to pass water. I can hold on, but I need to get to relieve myself as quick as possible. It hasn’t caused any particular problems, but it’s something I’m aware of … I’ve always got to be aware of whether there’s any cover locally that I can secrete myself into if I need to … It’s not something I can put off for several hours thinking, ‘When I get home, I’ll go to the loo’.

Conclusion: theme 1a – kinds of lower urinary tract symptoms

Interviews gave insight into the range and kinds of LUTS evident within a community cohort of men (see Figure 8, 1a). The cohort appeared entirely apt, which suggests that GP identification processes were effective; all men displayed LUTS, of varying degrees of severity and with a full range of symptoms. Kinds of LUTS were in line with clinical descriptions of LUTS and, although men did not self-categorise in terms of ‘voiding’ or ‘storage’ issues, these categories were appropriate delineators and clearly apparent within the interview sample. Some men reported UTIs, which interacted with their LUTS; for these men, the boundaries between LUTS and UTIs are less experientially meaningful than those that might be clinically imposed. In addition, a number of men reported diffuse symptoms that straddled categories. The prevalence of nocturia across categories was notable. It is widely reported that a large proportion of men with LUTS do not ever reach primary care;47 given that this sample was necessarily made up of men with LUTS who were known to primary care, it is perhaps unsurprising that many men had experienced symptoms for many years and had moderate or severe symptoms, both descriptively and in terms of their IPSS. This symptom longevity and severity of symptom experience, of relevance to men’s interest in the trial and willingness to take part, belies the burden of LUTS within the community, which falls within, and, for many more men, is likely to fall beyond, the remit of primary care.

Theme 1b: experiences of lower urinary tract symptoms

Men’s descriptions of their day-to-day lived experience share much with long-standing qualitative reports of men’s LUTS experiences.48–52 Men describe a range of daily, and nightly, disturbances, frustrations, irritations, embarrassments, anxieties and fears, normalised conceptually as ‘old men’s problems’, despite a number of men in the qualitative study being aged < 60 years (see Figure 8, theme 1b, and see Appendix 4 for further accounts).

Tiredness and distress from sleep disturbance

Men with nocturia described tiredness and distress, because of constant nightly sleep disturbance and concomitant negative impacts on levels of tiredness, ability to function/work and mood:

[I]t was bothering me a lot because you are going into work and you are absolutely shattered … Tiredness and irritable and being miserable all the time.

Stress, anxiety and fear

Men described diverse anxieties relating to various aspects of LUTS. These included logistical anxieties (the need to plan journeys and trips, to know the location of toilets and to plan toilet breaks), anxieties around the potential for leakages during social events, anxieties that symptoms will inevitably worsen and that LUTS is an indication of relentless age-related decline, anxieties around inaction and not knowing what action to take, vicious cycles of anxiety whereby constant surveillance to manage symptoms increased tension in ways that perversely worsened symptoms and anxieties that symptoms might indicate prostate cancer:

Well, it was having to check yourself all the time, I’ve got to go to the loo before I do this. I couldn’t go to a meeting or go out because I’d have to check where the loos were. The whole cycle was making me more and more anxious. It would get to the point where I would say, ‘I’m not doing that. I can’t be bothered doing that. It’s too much stress’ …

Worrying that I wasn’t going to be, you know – have an accident and that sort of thing, I wasn’t able to get to a loo in time, that sort of thing. That was really worrying.

I suppose I never articulated this at the time but feeling concerned about a loss of control over my life … ‘Loss of control over my life’ sounds rather pretentious but I can’t think of a better way of phrasing it.

… that anxiety, if you see what I mean, of not doing anything.

… I suppose mentally because you know you’ve got a problem you make it worse for yourself thinking, ‘When can I get to the loo next?’ … Just a general urgency really of wanting to go, and anxiety I guess.

I sometimes worry that it might be something like sort of cancer, which thankfully it’s proved not to be. That’s when it preys on my mind.

Embarrassment, awkwardness and shame

Men described feeling embarrassed, awkward and a sense of stigma-related shame, associated with LUTS:

It’s quite soul destroying. It makes you feel like when you were a child and you used to wet the bed. The stigma and stuff like that. It’s going back to that stage and thinking that I’m a grown man, I shouldn’t be doing this.

If I was driving up a motorway and I just passed a service station, I’d be in agony by the time I got to the next one and sometimes obviously I dribbled. It was getting embarrassing … It’s just got to a stage where it was getting too embarrassing to go out.

I don’t think I would have discussed the urgency problem with [my wife], actually, thinking about it. No, it would have been around getting up in the night … [Interviewer: What stops you …?] I suppose embarrassment. It’s to do with … self-esteem. You feel that you are diminished, in your own view, that I lack control … Therefore, I would feel embarrassed …

Frustration, annoyance, disturbance, disruption and feeling down

Many men described feeling annoyed and frustrated by their symptoms, whether because of frequent night-waking, slow flow, a frequent need to urinate or wet patches; for some, the level of disruption was more a source of frustration and irritation than anxiety, whereas for others it was frustrating, distressing and concerning. The word ‘bothersome’, widely used in the clinical symptom assessments,53 was occasionally used unprompted by men in the sample (although it is perhaps a somewhat outmoded term), and remains apt in relation to this constellation of responses to the experience of LUTS (although insufficient in relation to the full range of distressing experiences described by men):

I’m not banging my head or gonna commit suicide about it, but it does bother me a little bit, sometimes I have to change underwear a good two, three times a day, possibly … it can be a bit annoying at times.

Normalisation and discounting as ‘part of getting old’

Many men describe their symptoms as something inevitably associated with ageing or ‘old men’s problems’.48–52,54 This age-related normalisation is, in one sense, reassuring, in that ‘normal’ also means that there is not a more concerning explanation for, or condition underlying, LUTS. Normalisation is, however, also potentially dismissive, in the sense that it suggests inevitability. Inevitability is thoroughly undermining of potential efforts to ameliorate the condition through enhanced understanding and self-help, implicitly carrying a sense instead that there is no need to attend to anything but the most severe symptoms (at which point pharmaceutical/surgical treatment options might be more palatable):

Probably I just get on with it, yeah. A good description I heard from a doctor on YouTube [YouTube, LLC, San Bruno, CA, USA], ‘Getting old is not for sissies’, and I do consider this urinary problem along with all the other aches and pains is part of getting old.

Conclusions: theme 1b – experiences of lower urinary tract symptoms

Men describe a range of distressing symptom experiences, which ‘bothersome’ perhaps overneatly subsumes (see Figure 8, theme 1b). These range from tiredness and low or bad mood associated with frequent sleep disturbance, through a fleet of anxieties and stresses associated with concern about being caught short (leakage, whether post-voiding dribble or incontinence and wet clothing/visible damp patches), to being unable to initiate micturition after long periods holding. The associated logistical planning and surveillance required to ensure ready access to toilets during public/social activities, alongside embarrassment, shame, dispiritedness, frustration and annoyance, mean that LUTS disrupt everyday life. Many men said that they did not allow these symptoms to interrupt their daily activities, but some said that, over time, as symptoms worsened, they had withdrawn from certain or all social events and activities. The sense that these symptoms are an inevitable part of ageing was a predominant feature of accounts and was something that had, for many, been reinforced by the common tendency among men to shrug off symptoms as ‘part of getting old’.

Theme 1c: personal and social factors

Men’s contextual personal and social circumstances (see Figure 8, theme 1c, ‘Personal/social factors’) varied and shaped the interview cohort in ways that are likely to be relevant to experiences of LUTS, engagement with health services, involvement in the TRIUMPH trial and take-up of self-help guidance (see Figure 8, 1c; see also Appendix 5 for further accounts).

Men had varying degrees of additional contextual health concerns at the time of their involvement in the trial. The degree and centrality of other health issues factored in men’s focus on LUTS and willingness and ability to engage with the intervention; many men could be characterised as ‘well or very well’:

Generally very fit and healthy really, physically active and no health problems.

A number of men had considerable additional health issues alongside LUTS, but these were well-managed/in remission and did not stop LUTS from being a considerable additional concern/focus. Some men had conditions that interacted with their LUTS, such as diabetes, UTIs, prostate infections, or irritable bowel syndrome, whereby symptoms related to the respective conditions were, at times, indistinguishable or interacted (e.g. needing to urinate frequently, pain or sensitivity associated with excretion/voiding):

I also suffer from irritable bowel syndrome which concatenates with the urinary problems.

Some men had more active current and/or overwhelming health issues, which meant that LUTS were a peripheral concern at the time of their initial involvement in the trial:

Well, I’m in and out for tests on the operation … It is a bit concerning really … I had to go into the hospital and have tests and he said there’s blood being lost somewhere … Shortness of breath … I find it difficult walking. I get pains in the stomach whenever I try to walk … I think time’s run out now anyway…

Life circumstances/lifestyle

Men’s lifestyles varied: some were working, many were retired, some were carers for their partners and some were younger men with children at home, alongside other commitments. Most men were married, but some were civil partnered, widowed, divorced or single. The men often appeared relatively educated (describing careers in engineering, research, medicine, teaching, civil service, accountancy and other professional roles), affluent (homeowners, with gardens, a car, taking flights, holidays abroad) and active (describing regular activities including cycling, walking, swimming, golf, cruises, scuba diving, theatre trips, football/cricket matches, going to the cinema and shopping) and unperturbed by the paperwork and other tasks necessary to participate in the TRIUMPH trial. However, the sample was not uniform: among those interviewed were also a number of skilled tradesmen (e.g. working/previously working in manual engineering, electrical engineering, carpentry, gardening, firefighting, flight-attending), some had officer-/captain-rank military backgrounds, others were unable to work because of disabilities or ill health, or were in recovery from serious health conditions (e.g. cancer, heart surgery, depression, accidental injury), and some described more sedentary, less health-conscious/active lifestyles.

History of urinary tract infections/lower urinary tract symptoms/bed-wetting

Some men described long histories of urinary issues; for some these related to long-standing issues with LUTS and/or UTIs (for some these histories extended over 20–40 years). For others, there were traumatic childhood experiences of bed-wetting into late childhood/early adulthood. For some of those involved in the trial, urinary issues were a traumatic and/or debilitating lifelong experience. There is a growing literature relating to the life-course experience of urinary issues.55 Some of the study men who had long histories of urinary issues (such as bed-wetting in later childhood) or long histories of UTIs or LUTS also described considerable sensitivity, embarrassment and shame in relation to their urinary experiences. In some of these cases, alongside dispiritedness and shame in relation to LUTS, men reported long-term mental health issues, in particular depression in adulthood.

Men with long-term recurrent UTIs:

… I’ve always had a problem with urinary tract infections for most of my life … I’m getting about two or three infections a year … [Interviewer: When did you first start to experience that?] I think it must have been about when I was about 22, 23, something like that. Yeah, so about 40 years you could say.

Men with childhood/adolescent urinary issues:

Well, um … I’m not sure [when LUTS started] because when I was – I had a problem with bed-wetting until I was almost 20 and so I’m wondering whether I have always had a problem of some description … It was horrible, truly horrible. I used to go to school, and often I used to go to school smelling and it was just horrible, completely from beginning to end. It just made me feel really bad.

Men with a family history of prostate cancer

Some men had fathers or brothers who had been diagnosed with prostate cancer. One man had two brothers diagnosed with prostate cancer in the previous 12 months (this man was one of the few men of black, mixed-race or Asian heritage, perhaps underscoring varying disease prevalence and experience among diverse communities and the kinds of issues that may warrant more focused attention and be underdocumented in a predominantly white sample). These men were understandably particularly alert to the possibility of prostate cancer:

My eldest brother he’s had his prostate removed but he’s doing alright now. My youngest brother who’s got prostate cancer, he hasn’t started treatment yet because they found it at a very, very early stage.

Gender

Issues of gender, or ‘being a man’, were apparent, especially when it came to men sharing their experiences, and in their help-seeking behaviours. Men said they did not readily talk about LUTS with friends, family members or clinicians.56,57 Although some men described comfortably talking (at least with some others) about their symptoms, others identified their own and/or other men’s reluctance or embarrassment to do so, in anything other than a jocular and dismissive way, as an aspect of gender. This tendency can be seen to increase the chances that symptoms will be downplayed, and reduce everyday opportunities for sharing LUTS experiences, information and guidance among men:

… probably a bit typical of men, I think, not just in lower urinary tract symptoms, but all kinds of other things, men just don’t talk to each other about those sorts of things. There’s a couple of close friends, who I’ve talked to about it, but mainly in a fairly light-hearted way, almost, as part of banter, really.

Character/personality and health-seeking behaviours

Men also varied in their health-seeking behaviours.

Proactive/not complacent

Some men said that they mostly felt comfortable independently exploring or researching health conditions, in print or online, and readily seeking clinical guidance:

I look up everything … I’ve always done it no matter what, even if I’m buying something, I’m researching it to be honest … I think that forewarned is forearmed if you know what I mean? So you can plan for things.

As soon as there’s a twitch I go and get sorted out.

Reticent/avoidant

Some men were much more anxious about exploring health concerns, especially without clinical guidance or oversight, and mostly avoided doing so:

… I didn’t want to know. I thought if I ignore it, it’ll go away …

Stoic

Others were more stoic in their tolerance of various symptoms, and consequently unlikely to seek support unless symptoms became in some way alarming. This ‘stoic’ approach went hand in hand with processes of normalisation and discounting (see Normalisation and discounting as ‘part of getting old’), and is a common barrier to seeking support in relation to LUTS:

I’m quite stoic in my outlook and I tend to think, you know, you’re not gonna get through life without putting up with something or other and as things go, it’s not all that bad.

Conclusions: theme 1c – personal and social factors

Men’s LUTS-related experiences and health-seeking behaviours were shaped by a number of personal and social dimensions (see Figure 8, 1c), in particular (1) health (whether relatively well or unwell); (2) lifestyle/life circumstances, including marriage and working status (being married/civil partnered/single, being retired/in work/unemployed, having caring responsibilities), and having a relatively ‘healthy’ lifestyle (being active/fit, taking care with diet/alcohol, attending to mental health); (3) having a life course/long history of urinary issues; (4) having a family history of prostate cancer; (5) gender dynamics related to discussing symptoms/help-seeking; and (6) character/personality in relation to seeking health-related information/health checks (being proactive, avoidant or stoic). The qualitative sample suggested a predominance of apparently relatively affluent, married, retired men with largely healthy lifestyles, who were also fairly proactive in their health-seeking behaviours. Nevertheless, there were also busy working men, skilled tradesmen, unemployed men, men with young children, men caring full-time for partners, men caring regularly for grandchildren (to support working adult children), men with severe additional health issues, many men who did not discuss their symptoms with others and men who felt anxious about seeking health-related information/guidance, including (or especially) online via internet search engines. Despite apparent educational and lifestyle advantages, and relative health-related proactivity, many men described very lengthy periods with disruptive symptoms, without seeking clinical or other support.

Overall conclusions: theme 1 – lower urinary tract symptoms experiences

The TRIUMPH qualitative study cohort were men with a full range of LUTS, including long-term and severe symptoms, which impeded men’s lives, causing distress, tiredness, anxiety, embarrassment, frustration and annoyance, and, at worst, affected work and/or stopped men taking part in valued social activities. Some men described considerable and traumatic life-course urinary issues (relating to chronic recurrent UTIs and, more rarely, bed-wetting into early adulthood).

Many of the men were retired and married with grown-up children and appeared to be relatively affluent retired professionals, in reasonably good health, with relatively active lifestyles. The qualitative sample was also overwhelmingly white, including only four men of black, mixed-race or Asian heritage. This issue of bias (relating not to the kinds or severity of LUTS experiences, but to the culture, race, lifestyles and life circumstances of the men who volunteered to take part) will be returned to (see Discussion and conclusions). Nevertheless, the qualitative study includes accounts of men who were black, mixed race or Asian (also Polish), as well as men who had considerable additional health issues; men who had less active lifestyles; men who were younger and working, including skilled tradesmen; men with military backgrounds; and men who were unemployed and/or unable to work following bouts of ill-health.

Other useful population dynamics were evident, of relevance to men’s willingness, engagement and uptake of health-related information and guidance, in particular gender dynamics, associated with men’s discomfort in relation to, and dissuasion from, raising the issue of LUTS (and other non-life-threatening health conditions), and levels of proactivity, anxiety-related avoidance and stoicism in relation to health-related information, advice and help-seeking.

Theme 2: visiting the general practitioner/entering primary care

Men were asked to describe their LUTS-related contact with primary care. This gave useful insight into the drivers of GP visits, and the ways in which men with LUTS have been, and are currently, supported within primary care (and, if referrals had taken place, within secondary or specialist/consultant-led urological care) from the perspectives of male primary care patients with LUTS in (south-west) England. An exploration of men’s primary care experiences and post-primary care knowledge and awareness of their LUTS condition, and of self-help guidance received via primary care, offered insight into the status of, and need for, enhanced information provision and self-help guidance within primary care for men with LUTS (see Figure 8, theme 2).

Theme 2a: drivers of the general practitioner visit

The men in the TRIUMPH trial were identified by their general practices as men with some LUTS-related GP contact. For some this GP contact had been fairly recent, for instance within the preceding 1 or 2 years, but many men recalled initial discussions with their GP about LUTS taking place very many years previously (for some, ≥ 20 years prior to engagement in the TRIUMPH trial); some did not recall a designated LUTS consultation, but rather felt that they had probably mentioned their LUTS ‘in passing’ at some stage, and some recalled prostate cancer concerns and prostate-specific antigen (PSA) tests, rather than LUTS-focused discussions. This meant that recollections varied from distant, vague, summary or non-existent, to more recent, detailed and/or relatable. Nevertheless, there were similarities across time in the accounts of what drove men to visit or raise LUTS with their GP (see Figure 8, 2a): namely symptom severity, and, beyond symptom severity, concerns about prostate cancer were prevalent (and often it was a combination of these factors; see Appendix 6 for additional accounts).

Symptom severity (and gradual onset/high thresholds of severity)

Many men described a gradual worsening of symptoms, often over lengthy time periods, before ultimately making an appointment with their GP. Any kind of LUTS could reach a threshold to precipitate a GP appointment: for very many it was initially sleep disturbance; for others worsening frequency, urgency and/or hesitancy or slow-flow issues; a particularly painful or debilitating UTI (alongside LUTS); diffuse or multiple LUTS; or an incident of acute urinary retention. For a few men the threshold seemed low (e.g. waking once a night over a period of months) and this ‘low’ threshold was often accompanied by concerns about the possibility of prostate cancer (see Fear of prostate cancer). However, for many more men, the threshold was very high (e.g. waking six or seven times a night for 20 years before seeking help or advice from primary care), with a tendency to discount even relatively severe symptoms for prolonged periods, often years, before any action was taken:

It had become more often over a period of time, but whereas you start from not having to go at all and just wake up in the morning and go to the toilet, you then find once during the night I’d get up and then a year or 2 later you’d notice it’s twice a night I’m getting up now, and then a year or 2 later I got up three times last night … It developed over probably 5 or 10 years and it’s when it reaches the point where it becomes three and maybe even four times a night that then you really feel ‘isn’t there something we can do about this?’ and that’s when I went off to see the GP.

Fear of prostate cancer

As has been reported elsewhere, for many men, concerns about prostate cancer were a major factor in the decision to consult a GP.50,52,54 Often the precursor to seeking clinical input was the experience of an acquaintance, friend or family member, or indeed a well-known public figure, who had been diagnosed with prostate cancer and described LUTS as a precursor or an associated symptom. For others, persistent/worsening LUTS increased tacit cancer concerns, triggering the decision to seek clinical support. Some reported concerned spouses/partners encouraging a check-up as symptoms continued or deteriorated. Several had read/heard about the PSA test and were keen to access this, for reassurance that their LUTS were not related to prostate cancer; some felt that these kinds of tests were, or, if not, ought to be, included in a general health ‘MOT’ for men in older-age brackets, and sought it out on that basis. Among TRIUMPH trial men, prostate cancer concerns were a common precursor to, and component of, primary care LUTS-related consultations (see Appendix 6 for additional accounts):

It was basically the fact I started to get reduced flow and difficulty urinating and a sense of urgency as well all the time, and I was living with this feeling of always needing to go to the toilet, but then going to the toilet and not being able to pass water. [Interviewer: What got you to the GP? What prompted you to take action?] Basically, because a friend got prostate cancer and had similar symptoms, so I decided I’d best go and have investigation done.

Notably, men seemed more inclined or determined to visit their GP because of prostate cancer concerns than because of LUTS, which may mean that men with mild/moderate LUTS are more likely to present to their GPs seeking PSA tests and reassurance in relation to prostate cancer, rather than LUTS remedy, despite enduring LUTS.

Recognising that the main drivers of GP visits in relation to LUTS are ‘severity of symptoms’ and ‘life-threatening cancer concerns’ raises a number of issues:

• Men are liable to downplay their LUTS, including with their GPs. By implicitly characterising LUTS as a mundane, trivial, inevitable facet of old age, men disregarded even severe and debilitating long-term LUTS experiences. This way of downplaying (at times even severe, distressing and disruptive) LUTS for many months or years affects men’s chances of seeking timely primary care, when chronic symptoms are less acutely severe.
• There is a major disparity between men’s propensity to take action on prostate cancer concern and their propensity to take action on LUTS. For some men, regular health checks, including PSA tests, and taking a proactive stance in relation to health and concerning symptoms were an important part of looking after themselves.58,59 Paradoxically, men felt that it was important not to ignore health concerns in relation to (the relatively low risk of) prostate cancer, and simultaneously downplayed and discounted the need to visit or revisit their GP in relation to (present and enduring) LUTS.60 The difference between the characterisation of clinically pressing (‘life-threatening’) prostate cancer concern and, by contrast, clinically unworthy (‘mundane/trivial’) LUTS was stark.
• Men are liable to navigate their GP consultations away from LUTS and towards PSA testing. It is evident that patient-led GP consultations involving mild to moderate LUTS may be overly oriented towards attending to prostate cancer concerns, and the pros and cons of PSA testing. Given the exigencies of the GP consultation, this is likely to reduce both the focus on, and the opportunity to discuss, LUTS alleviation, and self-management guidance in any depth: … with hindsight this thing about the high PSA and the testing for prostate, took over the symptoms that I’d really gone to the doctor about, not that I’m criticising that because, you know, it’s the sensible thing to do, but once they came back negative it was: ‘oh well, have these tablets’ and I think at that stage it would have been very useful to have a booklet. OK, it’s all come back negative on the prostate, have a read of this booklet and then we’ll go from there in terms of treatment options and exercises and so on …FG11, age 73 years

Just ‘mentioned in passing’

A few men could not recall a dedicated LUTS-related GP consultation, but felt that they may have mentioned their LUTS at some stage ‘in passing’. Therefore, ongoing LUTS for some men in the trial had not yet reached a threshold that they felt might justify a dedicated GP consultation. This perhaps reflects the predominant position among men with LUTS in the population, who, for the most part, do not reach the attention of primary care.47 Unfortunately, this may be as close as some men get to discussing their LUTS with a GP or with anyone:

I think I did go to the doctor for something else and then I brought that up while I was with him. So, I didn’t make a special appointment to go and see him, from memory.

Conclusions: drivers of the general practitioner visit

To justify a visit to the GP, men described the need for symptoms to become sufficiently alarming, that is very disruptive, distressing or potentially life-threatening (see Figure 8, 2a). This might be the result of severely disruptive symptoms, the onset of a very painful UTI, incessant/frank incontinence, waking frequently at night, needing to urinate very frequently in the day and/or night, acute retention, blood in urine and/or prostate cancer concerns. This tendency can be seen as a barrier to the uptake of timely information and guidance on LUTS and LUTS self-management among men. The ‘severity’/’life-threatening’ barrier (the counterpart of the ‘normalisation/discounting’ barrier; see Normalisation and discounting as ‘part of getting old’) to accessing timely self-help guidance appears to operate within the GP consultation, whereby acute severity of LUTS and/or prostate cancer concern skews the discussion, reducing the likelihood that the day-to-day self-management of less acute symptoms will be discussed in any detail, as opposed to reassurance, PSA testing and pharmacological intervention options.

Theme 2b: the consultation – general practitioner responses

Patterns were evident in GP consultation descriptions (see Figure 8, 2b), which could be grouped according to those that offered the following.

Reassurance alone: ‘That’s what happens with old men’

Clinical guidelines recommend that GPs offer reassurance to men with LUTS who are concerned about their symptoms.7,46 Because many of the trial men arrived at their GPs to talk about their LUTS with concerns about prostate cancer, it is perhaps unsurprising that many trial men described their GP offering reassurance that LUTS was ‘nothing to worry about’ and a common symptom among ageing men. The guidance is clinically appropriate, given that LUTS is not a reliable indicator of prostate cancer and the majority of men with LUTS will not have prostate cancer.60 However, given men’s tendency to discount LUTS as an inevitable part of ageing, there are some key problems with this approach. First, reassurance alone fails to address LUTS; following their GP’s reassurance, men described a sense that enduring LUTS was something they just had to deal with by themselves as part of ageing:

My recollection of the exercise [GP consultation] is ‘That’s what happens with old men’, and so I didn’t feel that really anything came out of going to see my GP.

Most … I’ve been told [by the GP], ‘Oh that’s your age. Learn to live with it.’ But that’s as far as it went really.

Second, men described taking months, or years, to present LUTS issues to their GP, which means we might best view ‘raising LUTS with a GP’ as a relatively rare moment in a potentially long trajectory of LUTS. From this vantage, providing cursory reassurance that LUTS is a normal part of ageing can be seen as a failure to offer robust sensitive support (be it information, conservative care guidance or other assessment or treatment),7,46 at a rare opportunity to do so.

Physical examinations, routine tests, referrals and diagnoses

For men who received more than simply ‘reassurance’, there was a familiar pattern of assessment and diagnosis and a familiar pattern of limited or absent self-management guidance. Most men recalled describing their LUTS and/or being assessed by their GP, mostly by digital rectal examination, alongside various blood and urine tests (men rarely knew what kinds of blood tests they had received, unless this was a PSA test). This corresponds with GPs’ accounts (see Interviews with clinicians). In the absence of indicators of a UTI, diabetes, blood in urine and physical signs of prostate tumour, most men were diagnosed with suspected ‘enlarged prostate’, as well as being reassured that this was age-related, most likely benign and nothing to worry about:

I have had several times with my GP … a digital examination, just because I’m aware I’ve got an enlarged prostate. Whether that was because of the urinary infection, they’re checking because of that, or simply because the other related symptoms might have led to thinking there was an issue … But each time, they have said, ‘Yes. It is enlarged, but there’s no indication of it being untoward’. It was an age thing, they thought, rather than anything more sinister.

Treatments (pharmacological intervention)

Many men were offered pharmacological treatment by their GPs (often tamsulosin and sometimes finasteride, but other drugs were mentioned, including sildenafil, mirabegron and solifenacin). Some turned this down, while others tried medication either successfully or unsuccessfully, with or without unpleasant side effects or symptom alleviation. Others reported continuing with medications for years, and concern that symptoms might worsen if they stopped. Some men preferred not to take medication. Rarely were these men offered detailed self-management alongside or prior to pharmacological intervention:

… I felt sick, headaches, I just felt unwell most of the time. But within about 2 days of stopping taking them, I felt absolutely fine, except of course I had to get up in the night again.

… he checked my prostate and that needed … well, I’m on tamsulosin. I can’t remember why … if it was too hard or too soft, I can’t remember now … That was a few years ago.

… She said, ‘I can give you something to stop you getting up so many times during the night, but the problem with it is that it dries out your digestive tract’, and so I chose not to take anything …

The common features of pharmacological intervention accounts were as follows: (1) men did not regularly revisit LUTS-related medication use with their GP; (2) men remained unsure of the appropriate threshold for revisiting symptoms within primary care; (3) some men felt that surgery was something they might favour in the future, if/when things became really intolerable; and (4) most men taking medication for LUTS were unfamiliar with recommended self-management approaches (beyond, typically, fluid and caffeine reduction in the evening) prior to the TRIUMPH trial (for CG men, this continued to be the case throughout the trial).

Referral to urology

Men with more complicated symptoms often described referral to urology and a range of further assessments (including flow-rate tests, flexible cystoscopy, computerised tomography, residual bladder volume assessment, magnetic resonance imaging, biopsies and ultrasonography). This led to further diagnosis and pharmacological treatment (with outcomes as outlined above in relation to treatment experiences). A few of these men were able to describe the physiological issues underlying their LUTS in more detail and the proposed mechanisms of pharmacological interventions more precisely, but diagnosis/treatment often continued to be oriented around inconclusive assessment outcomes or vaguely around ‘enlarged prostate’ or ‘overactive bladder’. One study participant reported receiving the kind of guidance offered in the TRIUMPH trial booklet through his prior contact with urology; however, he was a notable anomaly: most men had very limited prior knowledge of recommended self-help techniques, even following referral to urology. Men rarely recalled GPs performing extensive (or any) urological assessments beyond questions/discussion of symptoms and very occasionally bladder diaries, and this chimed with clinicians’ accounts (see Interviews with clinicians, and Milosevic et al.54).

In summary, a considerable number of participants had been referred to urology specialists, where a wider range of assessments had taken place. Often this resulted in the prescription of additional/adapted LUTS medication, but did not routinely lead to extensive self-management discussion/or necessarily to more detailed symptom explanation/understanding.

Symptom explanations, self-management advice/guidance

It was evident in men’s understanding of their condition, and from descriptions of the explanations, treatment and guidance they had been offered through primary care, that there was a lack of explanation of the physiological underpinnings of their LUTS [beyond ‘enlarged’ prostate, ‘benign prostatic hyperplasia’ (BPH) or ‘overactive bladder’], and of detailed self-management options:

Interviewer: Did the doctor offer you any advice, or support … or anything in relation to the urgency? Any guidance?

CG7, age 61 years: Not that I can remember.

Interviewer: From that point when you went, have you done anything to change your lifestyle in any way?

CG7: No, not really. I just carry on as normal … I was just – possibly for want of a better word – just left to get on with it, I suppose.

Only a very few men described receiving more detailed physiological explanation (usually following specialist urological assessment). Few men reported extensive prior self-management guidance (either via their GP or through urology referral). One man was taken through bladder drill guidance and pelvic floor exercises as a result of urology referral and assessment, and another was asked by his GP to complete a bladder, food and symptom diary in the context of a combined suspected irritable bowel syndrome and LUTS presentation. This chimed with GP accounts: according both to interviews with TRIUMPH trial men and clinicians, bladder diaries, and especially pelvic floor exercises for men and bladder drills, are not routine parts of GPs’ LUTS consultations with men (apart from, perhaps, when GPs have a specialist urology interest, or a special interest in self-help; see Interviews with clinicians).

On the other hand, many men said their GP had asked about and advised on fluid and caffeine intake, often recommending, for instance, a reduction of fluid intake and caffeine in the evenings to alleviate night-waking to urinate:

I think the general advice was not to overdrink liquids before going to bed. She didn’t mention anything about diet or anything like that, just reducing the liquid intake.

The prostate-specific antigen test loop

Interviews with study men revealed a cycle of missed opportunities to address LUTS by offering appropriate self-management guidance that we have called the ‘PSA test loop’. Cyclically, men with LUTS, with mild to moderate/severe symptoms, described attending their GP primarily concerned that their symptoms could indicate prostate cancer. These men described primary prostate cancer concerns, and many actively sought a PSA test, discussed the pros and cons of PSA testing, and were given advisory leaflets, before deciding to go ahead with the PSA test. While some of these men went on to discuss LUTS treatment options (typically pharmacological intervention options) with their GPs following their PSA test results, many men phoned in for their PSA test results and on receipt of a ‘low’ PSA result, treated the consultation as complete: their prostate cancer concerns were alleviated. For many of these men LUTS physiology, self-management and symptom alleviation were not discussed further.

I was concerned to have my prostate checked … I think that’s the first thing that took me to my GP and on the whole I haven’t actually consulted him about the difficulties that I have passing water … you just realise you have to learn to live with it to some extent, until I suppose it gets absolutely desperate, then you say to the doctor ‘I’ve got to have something done, even if it’s surgery’.

We have called this the PSA test loop because many men described their relief following a ‘low’ PSA test result, and concurrent failure to attend further to their ongoing, gradually worsening LUTS presentation, eventually triggering further prostate cancer concerns. This results in repetitions of the PSA test cycle, with repeated failure to discuss conservative symptom management, rather than cancer concerns/PSA tests (see Appendix 6 for a long extract with a very clear account of this cycle).

No memory, no treatment

A few men described having no memory of their LUTS-related GP consultation, and similarly no recall of an offer of any LUTS-related treatment:

I have no memory of going to the GP, I obviously must have done, I’ve never had any treatment in the sense of any medication offered or anything like that so, I’ve just been putting up with it basically.

I spoke to the doctor and then, I don’t know, you guys got involved and then, yeah, that’s it, yeah. I’ve been to my doctor, he doesn’t really do anything for me, per se, on that …

These men may have forgotten the detail of a distant encounter. Indeed, some men openly said that they did not feel that they could rely on their memory of the consultation. Nevertheless, this gives the impression that some form of more lasting self-help guidance material may well be helpful.

Conclusions: theme 2 – general practitioner responses

Consultation accounts (see Figure 8, 2b) can be grouped into those that (1) offered cursory reassurance (that LUTS are nothing to worry about, and a common issue in older age); (2) involved a fuller assessment, including physical digital rectal examination and various diagnostic tests to rule out other issues (e.g. diabetes/UTI), basic lifestyle discussions/guidance around liquid intake and caffeine, and diagnosis (typically) of BPH/enlargement; (3) offered pharmacological medication; (4) involved referral for fuller urological investigation prior to diagnosis (typically BPH, enlarged prostate or overactive bladder syndrome); (5) were inadequate in relation to explanation and self-management approaches; and (6) resulted in PSA testing (and often the ‘PSA test loop’ cycle). Some men described GP encounters (and referrals to urology) involving all of these components; for others, cursory reassurance summed up the entire encounter, and reinforced the notion that LUTS were an inevitable part of ageing and not a clinical concern (an issue that has been reported elsewhere).50,54 What was missing from most accounts of GP responses was detailed explanation of the urinary system/probable physiology of a man’s particular LUTS (beyond the more generic ‘enlarged prostate’ explanation), and thorough discussion of self-management techniques. For the most part, men remained ill-informed after primary care engagement.

Theme 2c: outcomes and satisfaction

As has been reported elsewhere,54 men described positive relationships (see Figure 8, 2c) with their GPs and satisfaction with the outcomes of their LUTS-related primary care consultation. Despite displaying weak knowledge of their conditions (e.g. the mechanisms at play), often experiencing enduring symptoms with/without ongoing pharmacological treatment and having limited self-management guidance, men mostly did not report dissatisfaction with their GP encounters. Indeed, a few men had found their treatment (typically pharmacological intervention) helpful and continued to take medication, in some cases for years, typically without regular review, but happy that this helped alleviate symptoms. Some men reported acceptable side effects (including complete loss of libido for one man using finasteride, but which was reported as something that no longer felt concerning).61 Other men were more disappointed either with being offered ‘reassurance alone’ or as a result of unacceptable side effects that led to the cessation of medication (e.g. ejaculation problems, dry mouth, unpleasant side effects that were more severely distressing than LUTS). This begs the question: why do men who often continue to have untreated, ongoing, worsening symptoms report satisfaction with GP encounters that did not result in better understanding or symptom alleviation? The answer seems to be that men’s expectations in relation to LUTS care and support are very low; the belief that LUTS is inevitable and unworthy of clinical attention runs deep – men often felt they ought not really to be bringing their LUTS concerns to their GP, and were often genuinely relieved to be told that LUTS was not likely to be related to concerning underlying factors (e.g. prostate cancer).

General practitioners rely on patients to come forward if or when symptoms become sufficiently problematic or worrying. Unfortunately, in the case of LUTS, as a consequence of men’s reluctance to bother their GP with this ‘unworthy’ condition, many men do not return to their GPs for review or to discuss gradually worsening ongoing LUTS (inhibitors of GP attendance are discussed further in Theme 3: resigned tolerance and inhibitors of seeking further clinical support). Other notable outcomes of the GP encounter, of relevance to the study, and/or highlighted through interviews are discussed in the following sections.

Poor knowledge, awareness and understanding of recommended self-help guidance

In line with findings from other research in this area, on the whole, men seemed poorly informed about their LUTS condition.48,50–52 This was the case even despite a vested interest in LUTS alleviation, and often taking a proactive stance in relation to general health (e.g. attending to diet, weight and staying active). Prior to involvement in the TRIUMPH trial (and for CG men throughout the trial), most men lacked all but the most basic understanding and awareness of clinically supported self-help guidance for LUTS (see Appendix 6):

The night-time waking I just accept and I don’t know if maybe having to rush to the toilet, maybe I just think I hope it will go away some time. I wouldn’t know whether medically anything can be done about that so I’ve just accepted it as it is.

[Interviewer: What do you think of as being the cause?] I’ve no idea. Not being a medical person I’ve no idea what the cause may be so I just take it as something that’s happening and sort of get on with it.

Intervention arm men who received the TRIUMPH trial booklet were, for the most part, unfamiliar with much of the self-management guidance it contained. Many men with signs of post-voiding dribble had not come across this terminology, nor the urethral bulb massaging technique (prior to their involvement in the TRIUMPH trial). Men in the usual-care arm with symptoms of post-voiding dribble remained unfamiliar with the term and unaware of any technique that might alleviate it:

… also when I’ve finished urinating and then I quite often have a leakage afterwards. It’s as if what I’ve released from the bladder has gone down as far as the prostate and what is distal to the prostate has gone out but there is a dead leg between the bladder, sphincter and prostate, which occasionally will leak after urinating.

For the most part, self-management guidance was either absent or had not been a memorable or extensive component of LUTS-related primary care, despite many men having trialled, or still taking, medication to alleviate their LUTS. Even men who had reached specialist consultant-led urology services did not routinely report having received or implemented in-depth self-management guidance.

Follow-up

Men often reported a singular LUTS consultation, or sometimes an initial series of consultations whereby LUTS assessment led to urology referral, diagnosis and medication trial, or resulted in PSA testing (and cycles of the PSA test loop). After initial contact, interviews indicated long periods of time (years) in which men did not seek additional follow-up in relation to ongoing symptoms or for medication review:

… [the doctor] prescribed me these tamsulosin and sent me on my way and that was it really. I suppose, maybe, I should have gone back to her after a while, but that’s been it.

Overall conclusions: theme 2 – lower urinary tract symptoms-related primary care

The tendency among TRIUMPH trial men was to discount LUTS, and to reach primary care only if/when concerned that their symptoms may be indicative of a life-threatening condition (prostate cancer), or only after substantial, severe and lengthy periods enduring symptoms with little if any support, information or guidance. The explanation, given men’s accounts of their understanding and experiences of LUTS, is that men treat LUTS as an unfortunate but inevitable aspect of ageing, and have little hope of remedy, beyond a last resort of surgery. Some, but not all, men are keen to try pharmacological interventions, and some find these helpful; others experience unpleasant side effects, or minimal alleviation of symptoms, and are not keen to continue taking medication indefinitely. The dominant narrative that LUTS are ‘just part of ageing’ unfortunately appears to obliterate the seeking of a more constructive explanation and/or self-management guidance. TRIUMPH trial interviews suggest that not enough is currently done to counter this narrative within GP consultations; indeed, the standard reassurance offered to many men may serve to reinforce despondency, and needs an overhaul.

Much is covered in GP consultations (not just reassurance, but very often also tests and examinations to rule out other conditions, symptom discussion and referrals to urology to gauge aetiology, pharmacological interventions to reduce the size of the prostate and/or to relax the urethral sphincters, and so on). Indeed, men report being satisfied with their LUTS-related GP consultations, despite their symptoms persisting. It is important to situate men’s satisfaction in the context of their positive regard for their GP, their very low expectations in relation to LUTS remedy and their belief that they ought not really to bother their GP about LUTS.

Men do not miss what they do not know to expect. TRIUMPH trial interviews give the very strong impression that in-depth self-management is not a routine part of most GP LUTS consultations, easily slipping out of primary, and even secondary, care, perhaps because men are focused on prostate cancer concerns (and cycle through PSA tests loops without ever attending to their LUTS), or have, by the time they reach the GP, rather severe symptoms. The gap in men’s own understanding of the physiological mechanisms, and in their awareness that clinically recommended self-management approaches exist, has not, by most accounts, been sufficiently targeted or addressed, despite self-help guidance or ‘conservative care’ being recommended best practice in the first stages of LUTS care and treatment.7,46

As things stand, it appears that, by the time many men (at least those not focused on PSA tests) reach a threshold of symptom severity that leads them to seek treatment for LUTS from their GP, they are liable to move straight into a pharmacological pathway, bypassing earlier gradual stages of LUTS onset, when LUTS self-management might have been appropriately offered:

Well, I think again, it would have been useful to have a booklet like that [the TRIUMPH trial booklet] at a much earlier stage of my symptoms. In other words, I don’t think I ever had a detailed discussion with the GP or, you know, I don’t think anybody has ever sat down to me or given me anything to read giving an explanation to the symptoms … I mean I read the booklet and yes, it made sense, but I think because I was taking these tablets, that reduced the symptoms, I didn’t feel there was any particular need to, you know, do anything, if you like.

Theme 3: resigned tolerance and inhibitors of seeking further clinical support

Resigned tolerance

As set out previously (see Theme 1a: kinds of lower urinary tract symptoms and Theme 1b: experiences of lower urinary tract symptoms), TRIUMPH trial interviews found that many trial men were living with compromising, embarrassing and difficult symptoms for long periods of time without seeking support and without accessing recommended clinical self-management guidance (see Figure 8, 3b). As outlined previously (see Theme 1c: personal and social factors), men tended to tolerate frustrating, distressing and depressing symptoms with stoicism, as an inevitable facet of old age, believing that only the most severe disturbance, or prostate cancer concern, might warrant further assessment and intervention.

In place of clinically recommended self-management guidance, men described making do with a range of their own unsatisfactory techniques to attempt to mask or overcome their LUTS. Men described some caffeine reduction, and lessening fluids before bedtime or before long journeys; using long jumpers or shirts to hide potential leakages; squeezing and shaking and using a tissue to wipe in an attempt to avoid post-voiding dribble; planning journeys around multiple toilet breaks; anxiously locating/remembering the location of toilets; and, at worst, staying home and avoiding social situations made awkward, uncomfortable and/or distressing by LUTS. A few men had begun to use pads occasionally, for instance on long journeys or trips away, to avoid the anxiety of potential bed-wetting in hotels/friends’ houses and to ease the stress of long journeys, but the stigma around pad use was strong; men more often viewed pad use unfavourably as an unwelcome sign of irreversible age-related decline, rather than a straightforward symptom support. Men’s unguided self-management responses were idiosyncratic and unstructured, and were most often attempts to conceal, rather than address, the underlying physiological causes of symptoms:

I use a weird technique, which I’ve invented, which is to sort of try and syphon it out with loo paper so that it sort of pulls out the wee … Except that it hasn’t been very effective.

Men’s resigned tolerance in relation to chronic LUTS was often underpinned by a weak understanding of the physiology of their LUTS, thoroughly inadequate knowledge of recommended self-management strategies, and limited knowledge of pharmacological interventions available and how these might operate in relation to their symptoms.

Inhibitors of seeking further clinical support

Men repeatedly discounted their LUTS as a symbol of old age, rather than a physiological condition that might be alleviated (see Figure 8, 3a). This was especially the case when symptoms were mild or moderate, but even with severe symptoms men were often uncomfortable, uncertain and considered it to be inappropriate to raise LUTS with their GP, frequently stating that they did not want to waste or take up their GPs time with commonplace, old-men’s problems, for which they anticipated no remedy. Men who might welcome further advice were unsure about the threshold of symptoms that might appropriately cause them to arrange to see their GP. Men understood the outcome of primary care involvement to be assessment and diagnosis (ideally ruling out pernicious health concerns such as cancer); pharmacological treatment; or referral for urological assessment and, in the most serious cases, surgery. For men who were not keen to take medication and who did not consider their LUTS severe enough to embrace the risks of surgery, there perhaps seemed little point in seeking a GP’s input:

I would probably fight shy of bothering the GP with these symptoms, because I would, and probably mistakenly, think it’s not worth bothering them with. Although it’s tiresome to deal with, it’s never seemed to be a medical something you’d go to the doctor about.

My gut feeling is it’s just going to stay like it or get slightly worse and I have to put up with it, really … GPs are very busy with people with more serious things … whereas the urinary symptoms, I thought was just a nuisance.

I thought I’d go for a bit longer to see if it recurs, within a month or two of that time. If not, then put it down to some aberration of some kind, rather than go and bother the GP about it again …

This again belies a general lack of awareness of the range or efficacy of available self-management techniques (and targeted pharmacological interventions), revealing weaknesses in primary care, in everyday social discourse (in terms of sharing LUTS experiences, explanations and remedies), and in public health messaging.

Conclusions: theme 3 – resigned tolerance and inhibitors of revisiting primary care

Beyond the GP consultation, in the population at large, the shrouding of men’s LUTS’ experiences [diminished, stigmatised and hidden under the normalising and discounting notion of ‘old men’s problems; suppressed by gendered tendencies to avoid open discussion of these kinds of experiences (see Gender); and masked by ‘stoic’ tendencies to put up with ‘mundane’ symptoms] operates such that LUTS-related information and guidance for men are not proactively or commonly colloquially discussed or disseminated (see Figure 8, 3a and 3b). As a consequence, it seems that, despite the availability of best-practice guidelines supporting conservative self-management care for LUTS,7,46 men remain broadly unfamiliar with much of this material (see Theme 2c: outcomes and satisfaction) and unlikely to seek it out either through NHS online resources or through their local GP. Low levels of LUTS self-management dissemination reinforces a vicious cycle that further inhibits men from seeking out, being offered and passing on self-management guidance. In the grip of this lacuna, a great many men get on as best they can, masking, rather than addressing, their LUTS, with a sense of resigned tolerance and rarely considering it appropriate to seek help.

Theme 4: experiences of the intervention

How men responded to the intervention (see Figure 8, 4a and 4b) depended on a number of inter-related factors. Foremost was receptiveness, which related to the nature of men’s LUTS and readiness to take action. In addition, men’s character, lifestyle, life circumstances and concurrent health issues were all important factors. From a trial perspective, TRIUMPH trial communications and men’s experience of meeting with the trial nurse or HCA who delivered the intervention, along with their experience of the booklet itself, were critical (see Appendix 7 for additional accounts).

Receptiveness

Receptive men: men who received the intervention positively

Given the nature of men’s prior concealment and discounting of, at times distressing, symptoms, and apparent weaknesses in the dissemination of clinically recommended LUTS self-management guidance, both within and beyond primary care, it is perhaps unsurprising that, more often than not, the men welcomed the TRIUMPH trial intervention. Men often described being pleased to find themselves in the intervention arm and a little less pleased to find themselves in the usual-care arm. Alongside taking part for various altruistic reasons (to support the NHS, to contribute to health research, to support fellow patients), men often hoped that the trial might offer some help for their own neglected, but disruptive, ongoing symptoms:

I was starting to have a few accidents. In certain cases, embarrassing accidents, and it was a concern of mine. Then this letter comes through, and I thought that’s what I want to sort out.

When I got the stuff through the door, I thought ‘good, maybe I’ll learn something that’s going to help’ because obviously my symptoms were getting worse at this point …

Men who were especially receptive to the intervention spoke of:

• mild to moderate/severe symptoms, which were untreated/unsuccessfully treated, disruptive, distressing and frustrating, and which they wished to remedy
• long-term tolerance of disruptive symptoms, and reluctance to revisit/bother their GP with LUTS issues
• a perception that the TRIUMPH trial booklet content was novel and illuminating
• a belief that self-management techniques might alleviate symptoms, and a belief in self-management/lifestyle changes as an important part of good health (reflected in lifestyle)
• confidence in making changes (sometimes because of engagement in self-help programmes related to other health issues, e.g. diabetes prevention programmes, or other efforts to get fit and improve mental and physical health).

For the most part, the TRIUMPH trial intervention was warmly received by men in the intervention arm, and at times rather sadly wished for by men in the usual-care arm (see Appendix 7 for further accounts):

… it would be nice to have been able to have somebody to talk to about it and to explain or to try and help me with other ways ’cause I’m sure there’s got to be ways to help deal with the way that I have to do, what I have to do. The way, what my diet is etc., etc. The way I live my life. But it’s finding that person. There doesn’t seem to be anybody interested.

… a little pamphlet, little tiny book or, yeah, to me, I would have been happy to have something like that, like a little bible thing, you know, you can refer to it, ‘OK, I’ve tried that technique, cutting down my tea, it’s still not working, what else can I do?’, you know?

Unreceptive men: men who were ambivalent about and/or disinterested in the intervention

A few men were more sceptical or dismissive from the outset. One man felt that a large RCT of this nature, based around printed self-management guidance, might constitute a waste of health resources. A minority of men were more ambivalent, disengaged or uninterested in the guidance offered; this kind of response often related to:

• minor symptoms – milder, less disruptive or distressing symptoms and/or taking medication with beneficial effect and so feeling less compelled to take on self-help guidance
• very severe symptoms (being ‘too far down the line’) – frequent incontinence, regular pad use and/or contemplating surgery
• a feeling that the guidance does not offer anything much new or worth trying
• considering the strategies awkward, difficult, unpalatable or disruptive to implement
• not believing sufficiently that the strategies could be helpful and/or sufficient to alter symptoms. There was perhaps a slight relevance to me but not a huge amount. And the bit that I was directed to [urethral bulb technique], I find is moderately effective at night but I don’t really find it practicable when I’ve got clothes on … It’s not practicable most of the time.IG20, age 74 years I did read those. All the stuff that’s been sent to me, I’ve read it through once. But nothing really was earth-shattering …IG24, age 73 years (IG24 said he would be unlikely to keep hold of the booklet)

Character, lifestyle, life circumstances and concurrent health issues

Men’s character, lifestyle, life circumstances and concurrent health issues (see Theme 1c: personal and social factors) were relevant to receptiveness, in particular to men’s ease of engagement with the trial. For instance, some men described spouses/partners reading the booklet and making fluid/caffeine intake and dietary changes alongside them, offering daily support to the implementation of these kinds of lifestyle changes. Conversely, a man undergoing multiple unrelated hospital procedures felt unable to take on LUTS self-management advice, as did a man involved in the full-time care of his chronically ill partner. Retired men often described an ease of implementation related to having the time and space at home to focus on various aspects of the guidance. Conversely, working men were more susceptible to the food and drinks present in their environments (such as the tea/coffee offered frequently to tradespeople in people’s homes), and/or had to implement self-management lifestyle changes despite the tiredness of working shifts/night shifts. Some men embraced the guidance wholeheartedly, as it arrived at a time in their lives when they were already making substantial lifestyle changes (to diet and exercise) as a result of other health issues (e.g. post cancer treatment, following alcohol cessation as a result of alcohol dependency or to tackle diabetes and/or obesity).

Despite often being relatively health conscious and proactive in attending to their health, most men were unfamiliar with (at least some aspects of) the self-management guidance in the booklet. This unfamiliarity contributed to receptiveness, in that men often considered the material to be novel and illuminating (discussed further in The booklet).

TRIUMPH trial communication (administration/paperwork)

Most men were positive about, and untroubled by, their experience of the trial’s administration (e.g. letters introducing the trial, consent sheets, regular forms to complete, occasional telephone calls) and the paperwork involved in participation:

… it’s all relevant. It’s been good to do [the paperwork].

No problem at all.

I was quite happy; the initial letter that I had was quite instructive. The contacts that I’ve had with different people have been very positive …

This differed from the small sample of ‘decliner’ men who agreed to a short telephone interview subsequent to declining to take part (see Interviews with ‘declining’ men): some felt that the paperwork would be overly burdensome. The positivity of the trial men in relation to the paperwork involved in participation may reflect, in part, a sample of men who appeared to be relatively affluent, well-educated and retired, with some spare time to offer (however, this was not always the case, as is reflected in the interview study data, which include working men and men who described reading difficulties, but did not find the paperwork overly burdensome).

Issues with bladder diaries

One caveat relates to the bladder diaries that the intervention arm men were asked to complete. Many men made no complaint about bladder diaries, with some actually described completing the bladder diary as an interesting and informative experience in relation to their LUTS (and their desire to better understand any patterns or aggravating factors):

The bladder diary was useful. It’s something I’ll probably do again at some point just to see if there has been a good change. It’s a good way to monitor.

However, some men said that they found completion of the bladder diary somewhat irksome, especially men who were working (and needed to carry a measuring pot with them to work, for instance):

I think the one tricky thing was doing the bladder diary at the start; my lifestyle doesn’t actually lend itself that easily, being able to find somewhere to go collecting urine, to measure urine really.

A few men ultimately took part without completing their bladder diaries:

… the bottom line is when you need to go for a pee you need to go for a pee and it’s not necessarily always easy to find somewhere appropriate where you can go where you can measure the amount that you’re actually getting rid of.

Apart from issues with the bladder diary, men seemed positive about, and at ease with, the trial administration and communication, including, for the most part, the paperwork involved in participation.

Meeting the nurse/healthcare assistant and follow-up communication

The TRIUMPH trial intervention arm men met with a specially trained nurse or HCA at their usual surgery; some surgeries chose to use the TRIUMPH trial research nurse, others involved their own dedicated research nurse/HCA. Often men spoke favourably about this meeting, describing the clinician contact (the face-to-face meeting and the ensuing telephone calls) as very helpful:

I had quite a long conversation. She was very helpful, very understanding and I can’t think of any questions that I asked but she was very supportive in talking to me.

The fact that you get rung up to ask how you’re getting on, that, I think, is important. I did start making a serious effort to do the exercises once I started on the course, but they ring up to find out how I was getting on which, if I had been backsliding, I think would provide a bit of stimulus and get back and do them.

Men referred to the highlighting of relevant sections as useful:

Yes, when I initially was given the booklet, the nurse who gave it to me went through and marked out the pages that were most relevant, which I thought was helpful, but it needed concentrating on. Other than that it’s been a chat on the phone.

She was very good; they did say read the whole of the book, but there were parts of it more suited to me which she pointed out.

Some men mentioned specific personal concerns about undertaking aspects of the guidance and/or getting help or advice from the TRIUMPH trial research nurse/HCA with interpreting diagrams or descriptions of exercises and appreciating this personalised, in-person introduction to the booklet:

I talked to the research nurse at [surgery name, and nurse name] … we talked through my symptoms and she put little stickers on the sections that [she] thought were relevant to me and she was right … Well [named research nurse] assured me that the pelvic floor exercises wouldn’t create any problems with my inguinal hernia.

Well I started the exercises that the book gave me and the nurse told me how to do it.

For some men, the research nurse/HCA involvement at the outset, and oversight of their progress through telephone contact, was integral to the success of the guidance; they found this contact supportive and motivating and felt that they would not have made the changes they made with a booklet/guidance alone:

Personally, I got more out of the meeting than I did out of the book. But, on the other hand, you could easily say – I could easily say – it just endorsed what was in the book.

However, others felt that the meeting with the nurse was less necessary and that the material in the booklet was accessible, self-evident and sufficient to enable them to take action:

She outlined some areas in the book that I needed to read, but the booklet’s so simple you just read the lot anyway, it’s quite easy to follow and easy to read.

It seems the need among trial men for personal qualified clinical contact to support the guidance, whether in person and/or by telephone, was mixed; some really appreciated this contact, the personalisation of advice and the opportunity for discussion, and felt that they would not have made sense of, or taken up, the guidance, without it. Others described the booklet in and of itself as an appropriate means of disseminating the guidance, and felt comfortable taking what they needed from it, with or without additional clinical input (although most seemed to appreciate the focus on the identified relevant sections).

The booklet

For the most part, the men were strongly positive about the booklet, in terms of its (1) style (accessible language use, diagrams and images, material quality) and content (offering explanation as well as clear self-management guidance) and (2) structure (focused sections, which meant that the guidance could be tailored to their particular LUTS experiences). Overall, many men responded positively to the booklet:

I think the book’s been perfect. I mean … I give it a 10 out of 10 for everything practically.

I think overall, it’s tremendously reassuring to have this sort of booklet, and to see that all these things are very well recognised and demonstrated and that there are techniques for helping with them.

I think basically the sooner this gets out to everybody with symptoms the better.

I just really appreciate the fact that being given the booklet, and being explained and chatted through it with the nurse and everything, it then gave me the motivation to actually start trying things properly and to try it all together and the fact that then it’s made a big improvement.

There were a number of ways in which men responded positively to the booklet.

Booklet style and content

The men spoke appreciatively about the length and extensiveness of the booklet, the diagrams and pictures, the readability of the language, the durability of the material and the tone of the booklet. The men also described the content favourably as offering an explanation of their symptoms and information about their physiology, as well as clear, usable, self-management guidance, in an accessible format:

I think it’s the right length. I’m glad you didn’t make it any longer. I think it’s a read that you can do, and not be overwhelmed, in fact, which is always a good thing, you read it thinking ‘well I need to go into more depth on a couple of bits’, which I would have thought is the purpose of it … the diagrams are to the point but done in a way that is practical … it’s informative. I don’t think it patronises … I think it’s something that it’s good to go back to … Not only that … you can’t destroy this thing, it’s going to last forever.

[A] very clear book. I’ve followed a lot of the advice …

I thought it was good, good in the information and techniques and that. The one where you engage your core, it really works.

Mostly the men praised the style and layout, and especially the aspects of the content they found useful, but the men responded extremely heterogeneously to the subsections and were sometimes ambivalent about sections that had not been selected for their focus (while recognising others may have found the section more useful), or reported skipping over sections that were not novel to them, or which they found difficult to follow or irrelevant to their own LUTS, and therefore unhelpful.

Booklet structure

The men also spoke positively about their experience in making use of the booklet and commented on the structure that allowed them to select relevant parts, rather than feel it necessary to read everything at once, so they could visit or revisit parts that were relevant or needed refreshing, or which had been selected for their focus, without feeling they needed to read the whole booklet:

The other thing I thought that was good about the book was initially I came back and I just read the two or three pages that were applicable to me, this is no real criticism, but the bigger the booklet, the less you read it. I put this in my office, picked it up more than once – two or three times at least – and just reread the bits that were applicable to me. Then since then, I’ve gone through the rest of the book and found it quite good. Very good.

I think it wouldn’t hurt for more people to read this because, as I say, I’ve read it more than once, it’s not just a case of sitting here and read it once and forget it. I’ve gone back to things, not all of it in one go, but I’ve read sections that I think, ‘Oh hang on a minute!’ So, I’ve done that, you know, the bit about getting rid of the last bit, when you have to do things to yourself to do that, you might not get it quite right first time, your urethral bulb business. You think, ‘well OK we’ll have another go’, and eventually you get it right, which I’ve now managed to do.

The men specifically spoke positively about (1) ease of use; (2) the informative, explanatory and engaging content and tone; (3) the empowering nature of supported self-management; (4) novelty; and (5) the usefulness of specific sections.

Ease of use

The men seemed to respond very favourably to elements of the specific guidance suggested to them, often reporting finding it easy to implement the suggested lifestyle changes/techniques:

… it said what you had to do and it was quite straightforward and clear. Yes, the first or second time I tried doing those exercises I could feel the effect … It was good because I knew I could go somewhere now and if I got an urgency, I could stop the urgency.

I found it very easy to make sense of … I mean the jargon is explained in there.

I thought it was really good actually. Yeah, it’s good, it covers everything. Well, as much as, you know, all in layman’s terms, tells you what to do.

Being informative, explanatory and engaging

The men were happy to understand more about the underlying nature and physiology of their LUTS and appreciated the non-prescriptive tone of the book, and the information on offer, which supported engagement with the guidance:

[B]y reading the booklet it described the symptoms that I had and it gave a medical term for it so that is or was useful; I’ve certainly kept the booklet and if the issues came back one of the first things I would do would be to read the booklet again, to remind myself of, you know, the options and the things that could be done.

Because by reading the booklet and reading the whole thing, it really explained the physiological side of the problems as well as then going into a bit more depth with the diet side and then also the pelvic floor exercises and then it was just a bit more explanation; it doesn’t say ‘don’t do these things’. It doesn’t say ‘avoid caffeine’. It says keep it down …

Well, I think again, it would have been useful to have a booklet like that at a much earlier stage of my symptoms. In other words, I don’t think I ever had a detailed discussion with the GP or, you know, I don’t think anybody has ever sat down to me or given me anything to read giving an explanation to the symptoms.

The empowering nature of self-management

Men also described the process of trialling approaches to see what worked for them as an empowering and positive process, a virtuous cycle, of guided and supported, but self-governed, experimentation, outcome monitoring and adjustment:

… You can actually put together a direct link if you like … it’s actually proved their advice is true.

… actually it was also quite empowering to be told that it is OK to make that value judgement that, if you want to go out and have a few drinks and enjoy your night out, and you know there’s going to be a price to pay for it, that’s OK.

It’s not going to go away so I’m going to have to do something, and by doing these things I’ve got a certain amount of control over it.

Successful interventions motivated men to continue with adaptations, and to trial other aspects of the guidance. Less helpful interventions led men to drop elements that seemed unduly troublesome to implement and unhelpful in relation to symptoms, maintaining a sense of choice, control and sensitive responsivity over the changes implemented in relation to the symptoms endured. Men enthusiastically reported positive outcomes and a sense of being better informed about, and more adept in response to, their symptoms.

Novelty

I thought it was useful that I received this booklet though … That it was pointing out things that I’d never even considered doing …

Men’s positivity often related to the novelty of the material, as well as its clarity and usefulness. In these responses men were heterogeneous: one man had never heard that salt might interfere with his symptoms and found salt reduction an easy and effective means to alleviate symptoms; very many men had never heard of pelvic floor exercises for men; some men with post-voiding dribble found the urethral bulb technique ‘life-changing’ in relation to that symptom; many men reported dramatic changes to caffeine use and fluid intake that dramatically affected symptoms; and others found great confidence through application of the bladder drill and pelvic floor exercises. Beyond the section on pelvic floor, which was almost ubiquitously novel to the men in the trial, for each section there would be at least one man who felt that the contents were already familiar and not worth trying and another who found changes in this area transformational. This heterogeneity in relation to the utility of sections and responses among men meant that the comprehensive nature of the booklet, having multiple approaches contained in one well-structured place, was particularly beneficial.

Feedback on specific sections

As discussed, men’s responses to the sections were as heterogeneous as their individual LUTS profiles. However, there were some notable responses to each section.

Fluid intake and diet

Men had often been asked by their GPs about fluid or caffeine intake prior to their involvement in the TRIUMPH trial. Nevertheless, many still found the section on fluid intake informative. Men reported prior misunderstandings about the amount of fluid they needed to drink each day, often quoting the figure ‘2 l’ as the recommended amount, which they had previously been attempting to achieve. Some men had previously cut down on fluid and caffeine intake in the evening or late evening, but not more generally reduced fluid intake or eliminated caffeine. The detail of the guidance, including the reminder that fruit and vegetables, and foods such as pasta and rice that are cooked in water, contain water was helpful to alleviate competing health concerns around reducing fluid intake. Some who reduced/eliminated certain drinks/foods/salt experienced dramatically alleviated symptoms and were encouraged to continue with these changes to their diet/fluid intake:

I have basically reduced my fluid intake a bit. Previously I was under the impression, before I started the study and before I read the booklet, there was this always magic figure of 2 l a day. If you read the book it’s, ‘Well, no, actually. Less than that’. It is less than what I have been drinking.

I don’t have any caffeine any more. I’ve gone caffeine free, and I try to avoid tomato pastas, because I found really rich tomato-based pasta sauces were causing me problems, and then also I reduced my alcohol intake and also changed what I drink … The change in diet definitely made a big difference in how active my bladder is, how sensitive you could say … I know now what can aggravate my bladder.

… basically, you’ve found that once you’ve started to avoid caffeine you’ve got some relief …

Notably, men who had long histories of UTIs found the fluid intake guidance harder to take on board, having been told for many years to drink more water to reduce the chances of UTI, and wishing to avoid triggering any further unpleasant and disruptive UTIs. These men may need additional support and guidance to benefit from fluid intake advice to alleviate LUTS, without fear of aggravating UTIs.

Controlling bladder leakage and pelvic floor exercises

Most men described pelvic floor exercises for men as an entirely novel technique; those who had heard of pelvic floor exercises associated these with women’s gynaecological issues (clinician interviews revealed a similar bias of association among GPs). Men who trialled pelvic floor exercises described a difference in their levels of control, and in the frequency/urgency of needing to urinate. Men often described the pelvic floor exercises as easy to grasp from the descriptions used in the booklet, or with extra input from the TRIUMPH nurse/HCA, and said they felt that the exercises had helped. Some men were extremely enthusiastic to discover that this technique was applicable to men, surprised that it was not more widely known about and keen for this to be better disseminated among men:

I didn’t realise until I got this booklet that men had a pelvic floor, to be quite honest! But, learning how to squeeze that muscle, I find it doesn’t seem natural at all, but whenever you start doing something new, often it takes a while before you think, ‘Yes, that’s it. That’s what I’m trying to achieve’. By just squeezing that muscle, that has also helped with – that has helped me stop having to run to the loo.

Well I started the exercises that the book gave me. … hell of a difference … I wasn’t dribbling … I was only waking up twice a night … I’ve still got the urge to go when I’ve gotta go … but there was definitely a relief, it helped.

Nevertheless, some men who were recommended to trial pelvic floor exercises as part of the trial did not attempt to do so; some seemed daunted and maybe needed additional input and encouragement. Fluid and dietary changes seemed to be more readily implemented:

It’s just the pelvic floor exercises and other technique which I haven’t got to grips with yet, but I will try again.

Maintaining the recommended pelvic floor exercise programme may also be challenging: men reported remembering to do the exercises only on certain occasions (e.g. when driving or in bed), or performing the exercises only once or twice a day. One man said that, following his engagement with the trial, he had started researching LUTS self-help for men independently; as a consequence, he discovered some applications that support pelvic floor exercising for men (by sending regular reminders during the day to encourage regular pelvic floor exercising). These kinds of tools might be a useful addition to the guidance:

I’ve been trying to do it two to three times a day, but sometimes because there’s so much been going on at the moment, it sometimes is only about once a day.

A few men said they had skipped over the pelvic floor section because they felt that their exercise classes and/or gym routines already covered their ‘core’. However, this subsuming of ‘pelvic floor’ within ‘core’ could be a misunderstanding; it would be useful if (as with many women’s exercise classes) the pelvic floor was isolated within men’s standardised exercise regimes.

Controlling an urgent need to pass urine, and bladder training

Similarly to pelvic floor exercises, bladder drill was mostly unknown to trial men prior to their engagement in the TRIUMPH trial (and, along with pelvic floor exercises, was not spontaneously mentioned by CG men, and so appeared not to have been recommended to them). As with pelvic floor exercises alone, fewer men appeared to take up this guidance than fluid intake/diet changes; however, those who did said they experienced benefits:

[It’s] better because if I can avoid going to the toilet the minute it tells me I’ve got to go, and I can get through it doing that a couple of times, end up going the third time, I’ve then actually got more in my bladder to actually try and pass so the whole thing then of going to the toilet less means then I’m not getting the – how can I explain it? Going to the toilet lots, you end up almost with, your urethra ends up being sensitive as well, but by going to the toilet less your whole system is calmer.

Emptying your bladder as completely as possible

Men singled out the advice to ‘take your time’ as particularly helpful. Talking through tendencies to rush, inhibitions and apprehensions with a TRIUMPH trial nurse/HCA appeared, alongside the booklet guidance, to support a shift from inhibited rushing to taking the time needed:

… it was always a bit of a rush and then you think oh, you know, and then you stop and in a couple of minutes you want to go again, you know what I mean, you’ve not emptied the bladder properly. But I didn’t realise that was what was happening, I needed to take more time to empty.

… and then the thing about emptying your bladder as completely as possible … I’ll actually stay at the toilet and I find that I can basically urinate say 250 ml and I can wait and if I stay waiting, at about 5 minutes later I can urinate the same amount again … If I stand and wait for long enough, eventually it will empty again.

Spending longer time at the toilet. They said people don’t care how long you’re there … I thought it [the booklet and nurse meeting] was absolutely brilliant.

Getting rid of the last drops and the urethral bulb massaging technique

A number of trial men experienced post-voiding dribble; many said they had not mentioned this symptom to their GP and very few men had been offered the urethral bulb massaging technique as part of their primary care. Mostly the urethral bulb massaging technique was new to trial men. Some men were daunted by the description/images in the booklet or found the technique tricky to master (some said the descriptions and images were helpful and adequate; one that a 3D model might have helped):

Yeah. The bulb thing, I found difficult to do … I’ve just not really been able to kind of follow it terribly well and I feel so stupid.

Those men who got the hang of it were often delighted to find a relatively simple and effective fix to address this previously embarrassing and frustrating symptom:

Learning how to do that, clear the bulb, has been brilliant … It did take some time, and sometimes it seems to work better than others, but just by pressing in the right place, I was able to get the last, or a little bit more urine out and I didn’t feel as though I was going to end up dripping. Yes, it’s awkward. You have to get – you have to press in the right place, but anyway, I’ve found a degree of success with that … One of the best things in the booklet.

Men in the CG with unreported and unsupported post-voiding dribble described their continued struggle with this symptom, without realising it had a name or a technique that might reduce it; the dispiritedness of CG men, in contrast to intervention arm men’s relief and delight at discovering a fix, was especially stark in relation to post-voiding dribble and having/not having access to the urethral bulb massaging technique:

[I]t’s just, I’m 48 now, I don’t really wanna be a 60-year-old man walking down the road with a nappy around me, that’s just me, personally … it gets me a little bit low at times thinking, ‘oh God, I’m gonna be wetting myself’ …

Reducing sleep disturbance

This aspect of the booklet was the most familiar to men, as a result of discussions with their GP (about fluid and caffeine intake and sleep preparation), and/or through other sources of guidance on sleep improvement (by reducing light and noise disturbance, relaxation techniques). GPs had often mentioned afternoon/evening fluid and caffeine intake, and men were mostly familiar with the idea that caffeine could interfere with sleep and/or was a diuretic and many had trialled reduced caffeine and fluid intake in the evening prior to the TRIUMPH trial. This is perhaps in part because the symptom men most commonly said they brought to the attention of their GPs was nocturia (rather than other often undisclosed additional symptoms), but may also reflect general practices (see Interviews with clinicians). Trial men who reported improved sleeping with less night-waking to urinate often associated this with other aspects of the booklet, for instance pelvic floor exercises, bladder training, taking their time to urinate (including at night), and general fluid reduction and caffeine elimination. Men were not negative about this section, and some found it supportive, but the content was less remarked on. It may be the case that waking up in the night to urinate and the resultant sleep disturbance is less stigmatised and more readily discussed, so men were better informed in this area.

When you must see your doctor

In general, men were poorly informed about the nature and causes of LUTS, the self-management options and pharmacological or surgical treatments available, and when it might be appropriate to seek support from their GP. Men appreciated the clear description of symptoms that required clinical attention and welcomed this aspect of the booklet. This underlined the extent to which men were lacking, and in need of, clear guidance around their symptoms, including when to seek help.

Overall outcomes: theme 4

Improved symptoms, better informed, increased self-efficacy

Men described feeling much better about their LUTS, and in some cases about themselves (see Figure 8, 4c). Having a better explanation and understanding of, and better information and guidance around, self-management appeared to offer an increased sense of control and empowerment in relation to their symptoms. As much as supporting LUTS, this renewed sense of control challenged stigmatised notions of inevitable decline with age, and provided instead a sense of attainable restoration of control and function through achievable efforts that preserved a sense of self-efficacy in the face of ageing. Indeed, for many men, LUTS alleviation seemed slight, perhaps one fewer instance of night-waking and/or a reduced urgency with a bit more time to reach a toilet before leakage, yet the sense of increased control, of viable action and of better understanding brought greater benefits than those measured by symptom alleviation alone. This enhanced sense of self-efficacy and preservation of physical form through self-management techniques is something that needs to be assessed in relation to men’s sense of themselves as active and able, and in relation to their well-being, or as one man described it, to his cheerfulness and his feeling less old:

I felt quite embarrassed about it, but now that’s not happening; it’s obviously made me feel quite a bit more cheerful … You’re getting old and you think it’s one of the signs of getting old, but then you think ‘well, actually if I can do something about it, it’s gonna make me feel a lot better’ and that’s what I found is it made me feel less old … As we get older obviously things don’t work as well as they did and if you can do something about it, it’s quite good for your mental health aspect as well.

I’ve got mixed feelings because I still get up at least twice during the night, but on a more positive front, I feel more in control and that’s just made a difference … I’m able to do something about [post-voiding dribble], so that has made things a lot better … Well, I think the information is good … I think it – the information that I’ve had, the techniques I’ve been advised to do – have been good for me on an individual basis, so I’m very happy about that.

Benefits in the context of wider health concerns

The broader benefits, relating to increased self-efficacy and well-being, should not be underestimated and need to be situated in the context of wider health concerns. Feeling enabled and empowered to take action on ill health, and to challenge stigmatising notions of ageing decline, might have a benefit in relation to other health concerns and outcomes. This model of treatment and support situates the patient in a position of positive, informed and proactive self-management of health. This is in line with and supports best-practice treatment recommendations62 in relation to a whole range of health conditions, especially those most associated with age (such as heart disease, diabetes, back pain, arthritic pain). Being well-informed, maintaining an active lifestyle, having a good diet and having a positive disposition in relation to self-efficacy and potential symptom amelioration are the flagbearers of better outcomes in relation to many conditions that are increasingly prevalent with age, and for which social, psychological, environmental and physiological aspects play interwoven parts. Indeed, for some trial men, the TRIUMPH trial recommendations were all the more readily attempted in the context of recent health management lifestyle interventions, such as diabetes prevention programmes, which had already underscored the benefits of self-management and lifestyle adaptations.

Benefits related to dissemination: increased knowledge, openness and discussion of symptoms, and availability and sharing of supportive information

One of the most distressing aspects of LUTS evidenced in the TRIUMPH trial, as elsewhere,48,50,52,63 is the extent to which men are inhibited from discussing or seeking help in relation to declining and troubling symptoms, often over the course of many years and sometimes despite severe symptoms that negatively affect mental health and participation in valued activities.

Notably, although men were asked not to share the contents of the booklet over the course of the trial, a number of trial men described opening conversations about LUTS with friends and family as a result of taking part in the trial. This suggests that a publicised roll-out of self-management guidance could have the welcome potential to dramatically shift the level of public discourse in relation to everyday LUTS experiences, which might increase men’s awareness of and readiness to seek guidance, and to share useful information.

This would be a hugely welcome cultural shift in relation to men’s LUTS and a tremendously positive outcome in relation to overcoming the shrouding and masking of LUTS, supporting the everyday dissemination of self-help strategies and the destigmatising of these symptoms:

… of course, when we’re talking about blokes don’t talk about it to each other … I basically opened up about the issue about waterworks and of course the topic of the conversation was the urethral bulb and trying to find it. You know what I mean? … The fact we were talking about it … I have to say that that was probably one of the best things about the book …

I know a lot of people of my age and a good few of them we’ve all, believe it or not we’ve actually discussed this, which is unusual for blokes to do that. We all went, ‘Well this is weird, isn’t it, because blokes don’t do this sort of thing?’ I said, ‘Yes we do now …!’

Less positive outcomes and ambivalent or negative responses

As discussed, some men made no or few changes and found little, if any, benefit (see Figure 8, 4b):

I sort of read the booklet through and thought ‘yes, it all makes sense’, but there was no matter of, well, you know, that’s something I’ve really got to do; there was nothing in it which made me think, ‘wow, this is the answer to everything’.

Some found partial benefit, for instance with daytime, but not night-time, symptoms:

I still had those symptoms, but since I’ve had that booklet, quite a few of the techniques and things in there has improved the daytime things, but I still have a lot of disrupted sleep.

As with all self-help, men needed to be sufficiently motivated to make changes. For some men, involvement in the trial was transformational in relation to symptom alleviation and quality of life. Men who made changes and found benefit were inspired to try other aspects of the booklet and became active investigators in relation to the impact of their lifestyle on their symptoms, ready to trial different approaches and to take on or drop aspects of guidance as they found them helpful. Conversely, men who felt minimal interest and/or found little benefit in their attempts at modification were discouraged from making or trialling further aspects.

It is unlikely that this guidance will inevitably benefit all men with LUTS. There is likely to be a ‘sweet spot’ for self-management intervention. Men with most concern for their symptoms and most distress in relation to their symptoms and most readiness to address their symptoms, but whose symptoms are not so severe as to feel overwhelming and in need of urgent pharmacological or surgical attention, are perhaps the most likely to welcome and diligently trial these approaches.

Men with less concern about their symptoms and less interest in taking up the guidance offered were nevertheless mostly ambivalent or despondent, rather than plainly negative, critical or antagonised. Disengaged men often commented that they thought the information might well be useful and beneficial to others with more distressing symptoms. These men did not report negative consequences; they reported making little effort to make changes and little outcome, and, unlike men who found the intervention useful, said they were unlikely to keep hold of the booklet. These men were in the minority. Most intervention arm men were positive about the information they had been given and said they would keep hold of the booklet for future reference in anticipation of new or changing symptoms and to refresh their memory over time if they found their efforts lapsed and their symptoms worsened. Some men were emphatically positive: many said they would definitely not throw it away:

… you know, it’s my bible.

The perceived gain in terms of symptom control and self-efficacy among those who took up the guidance was marked; exceptionally so in some men. Likewise, there was an upbeat sense of new knowledgeability and understanding among intervention arm men who had, prior to the study, been considerably distressed, ill-informed and uncertain of what, if any, action to take (as continued to be the case for usual-care men).

Overall, the TRIUMPH qualitative study offers strong support for the widest possible dissemination of the trial guidance, with a target of men with distressing symptoms and a willingness to make lifestyle changes, but in recognition also of the very many men living in the shadows of enduring LUTS who are unlikely to seek support until the availability and potential benefits of self-help options are more widely known and more openly discussed. The more men who take action and find benefits, the more men might eventually come to recognise, discuss and share self-management approaches, with the result that men might begin to see self-management as an option and as a viable remedy. Successful application, even among a somewhat biased sample of proactive motivated men, is not just of (sometimes tremendous) benefit to these men, but holds the potential to shift the wider narrative on LUTS care among men in ways that promote self-management as an option for many more men.

Interviews with ‘declining’ men

Ten participants who had declined the invitation to take part in the main trial, but had indicated that they were happy to be contacted to discuss their reasons for doing so, were interviewed (five from Wessex and five from West of England general practices). The ‘declining’ men’s interviews were brief (approximately 10–15 minutes) telephone conversations that sought to gain an understanding of these men’s reasons for non-participation and to provide a small window of insight into sample bias in relation to participating men.

The most common reason ‘declining’ men gave for choosing not to take part was that the trial appeared to be a time-consuming and effortful undertaking, including questionnaires, a bladder diary and visits to the general practice to meet a clinician. Men variously said that they felt too old for this additional burden, they were too busy with full-time work, they were already overloaded because of a house move or ill health, or they had reading and/or memory difficulties that made paperwork arduous. As noted, TRIUMPH trial men, by contrast, were mostly at ease with the paperwork and other trial demands, although some were also working full time; were dealing with additional ill health and/or caring responsibilities; and, in some cases, also had reading difficulties. Nevertheless, a relatively affluent, retired and educated trial sample bias is evident.

The second main reason that ‘declining’ men gave for not taking part was interesting in that, rather than being different from the accounts of trial men, it resonated strongly with them, in particular with the accounts of those who remained somewhat disengaged over the course of the trial and who were less likely to take up the guidance or find benefit. ‘Declining’ men said that the trial did not seem relevant because they had visited their GP about LUTS years previously, their symptoms were no longer concerning following effective medication or PSA test results that had addressed their fear of cancer, or they had additional overwhelming health issues that took precedence over LUTS concerns. As noted, although similarly despondent men were also present in the TRIUMPH trial sample, trial men tended to have a motivational bias, volunteering partly in the hope that they might find some benefit at a time when symptoms warranted attention, and with a keenness to take action.

Notably, as with trial men, despite struggling unsupported with ongoing LUTS, ‘declining’ men considered their LUTS to be an inevitable part of ageing (which is common among similarly aged men), and did not have much hope of remedy:

Yeah, waking up in the night and if we go away anywhere and I want the toilet if I’m driving, I’ve got to stop and go, so you know anyways I have a mishap then. And if I go too long when I do want to go, I can’t go … If they could help me, I’d do something else like … but when you talk to different people they’re doing the same thing. The older you get, the more things you get go wrong …

Although only very briefly questioned on the subject, ‘declining’ men reported little if any prior self-management guidance beyond fluid intake guidance and general recommendations to take exercise. If they were able to describe their underlying physiological conditions, they tended to mention ‘enlarged prostate’. None of the men mentioned pelvic floor exercises, and, when prompted directly, were unfamiliar with the term.

In summary, this small group of men who were disinclined to take part in the TRIUMPH trial primarily because of the time and effort involved did not seem so different from trial men in their LUTS experiences, in their lack of awareness of self-management techniques or in their resigned tolerance of ongoing symptoms that were considered an inevitable and irredeemable facet of age.

Some of these men spoke favourably about the trial objectives, reaffirming the sense that, although men may not expect to find remedy, or for others to care about their LUTS, such care and interest is in fact very welcome:

… I do totally agree with what the project is about … is nice to think that somebody’s out there who actually cares and is interested …

Interviews with clinicians

Clinician interviews (n = 14) included GPs at usual care (n = 5) and intervention (n = 5) practice sites and interviews with research nurses (n = 4) who were trained to deliver the TRIUMPH trial intervention at intervention sites and interacted directly with intervention arm TRIUMPH trial men within their practices. GPs were not involved in the delivery of the TRIUMPH booklet and any contact they may have had with TRIUMPH trial men over the course of the trial was incidental; they were mostly unaware of which of their male patients had chosen to take part. GPs described an average of 2–6 weekly contacts with men presenting with LUTS (in the context of seeing 80–100 patients a week on the basis of full-time working hours) and agreed that, given the choice, men with LUTS were more likely to see a male GP; as a consequence, male GPs had somewhat higher rates of contact with men presenting with LUTS than their female counterparts.

Clinician interviews are very briefly summarised to provide insight into (1) the population of men with LUTS as experienced by GPs in primary care; (2) the nature and process of men’s primary care LUTS-related consultations, with a focus on the position of self-management guidance within primary care, from the perspective of GPs; (3) the receptiveness, engagement and outcomes of self-help guidance among TRIUMPH trial men (nurses involved in intervention delivery only); and (4) reflections on the future implementation of LUTS guidance for men. What is noteworthy about the clinician interviews is the extent to which they corroborate the men’s accounts in the qualitative study, albeit from a variety of different perspectives.

The population of men with lower urinary tract symptoms who reach primary care

General practitioners readily described men with LUTS presenting within their practices as falling into one of two categories: the first (and some felt predominantly) was men who were concerned about prostate cancer, and the second was men who were primarily concerned to alleviate (more severe) LUTS. This resonates strongly with men’s accounts of their decision to consult their GP and the pattern of primary care consultations that emerges from men’s descriptions.

However, GPs often felt that ‘men with concern about prostate cancer’ had minimal or no LUTS issues:

Sometimes they sound really mild and their only worry is about prostate cancer, and actually they really don’t mind the symptoms. You realise the IPSS score will be low, and you realise that they haven’t really come for any treatment. And you realise that the last question on the IPSS was likely to be, ‘If you spend the rest of your life like this, how would you feel?’ And they’re satisfied, and really it’s all about getting prostate cancer ruled out.

Yet TRIUMPH trial men who had reached their GP with concern about prostate cancer had often endured LUTS for lengthy periods. Men also described repeated cycles of PSA testing over the course of years that had failed to attend to their LUTS, which we have termed the ‘PSA test loop’. Men’s accounts suggest that men are liable to downplay ‘trivial’ LUTS concerns when their primary focus is to alleviate prostate cancer concern/undertake a PSA test. GPs appeared, in this sense, insensitive to the burden of untreated, concealed and downplayed LUTS in the adult male population, and the extent to which men consider it inappropriate to raise LUTS with their GP unless symptoms become intolerable. Whereas we might see men with very mild symptoms presenting to primary care as a golden opportunity to impart self-management guidance, GPs described offering reassurance (in relation to prostate cancer concerns, alongside PSA testing) and downplayed unconcerning symptoms, on the assumption that men would come back if/when symptoms became more problematic. This fits with men’s descriptions of their consultation experiences and our concerns that GPs’ reassurance feeds into men’s already strong tendency to discount and normalise, rather than proactively attend to and seek support in relation to, their LUTS.

The nature and process of general practitioner consultations for men with lower urinary tract symptoms, with a focus on self-management

Similarly to trial men, GPs’ accounts described the consultation process in terms of LUTS assessment/discussion (GPs referred to the IPSS as a framework for asking patients about their LUTS), urine and blood tests to rule out other conditions (including PSA testing; there was considerable disparity between clinicians in relation to thresholds for offering a PSA test, but agreement on the need to discuss the pros and cons/risks with patients) and a tendency to move fairly rapidly to medication if symptoms warranted it.

When it came to self-management, a few GPs with specialist urology interests and workloads spoke of utilising a full raft of approaches, including bladder diary assessments, pelvic floor exercise regimes, bladder drill, urethral bulb massaging, and fluid intake and dietary advice. Some GPs also said they often gave out printed sheets that covered all these aspects and suggested men read them. However, as with trial men, several GPs (both men and women) had not really considered the pelvic floor as part of self-management guidance for men (as opposed to for women), and one felt that this was also not routinely advised in letters for men following referral to urology specialists (a source of specialist treatment guidance and learning for GPs). As experienced by trial men, a number of GPs focused on self-management conversations that covered fluid intake and caffeine, especially in the evening, or in relation to diet and the aggravation of overactive bladder sensitivities:

For the majority then is we start saying, ‘OK, tell me about how much tea you drink, tell me about how much coffee you drink, whether you drink any energy drinks’ …

Some GPs saw their role in strongly physiological terms and felt that pharmacological intervention to reduce prostate size was the right focus for a clinician in relation to men with signs of enlarged prostate and LUTS. However, in contrast, and perhaps a sign of the shifting sands of (and individuality among) GPs’ professional stances, one GP described much more strongly foregrounding self-management approaches during all her consultations, including those for men with LUTS, and linking symptoms first to self-management, before offering other treatments:

I’m very aware of frailty and anticholinergic indexes and the burden of taking drugs and I think if you can sort something out without having to take a drug, I think that’s a very strongly held belief of my own. I often do say to patients, this is where I stand, so you have to say if you feel that you would much rather take a drug than do all this other stuff, then that is a choice you’ve got and you have to bear in mind that you’ve chosen a doctor who is on this end of the spectrum about that … I probably am on one end of the scale about wanting people to try lifestyle things first, rather than just go for medications that often have side effects and high numbers needed to treat to actually make a big difference.

Receptiveness, engagement and outcomes of the intervention among TRIUMPH trial men (nurses involved in intervention delivery only)

The TRIUMPH trial nurses reported a similar pattern to that found through interviews with trial men. For those men who were receptive to the guidance, it was enthusiastically received and, at times, transformational. Nurses were positive about their experiences delivering the booklet guidance and hopeful about its wider dissemination, in view of the positive impact it had on some of the men with whom they had contact. Men for whom LUTS were a substantial problem, severely affecting life choices, were able to vastly improve, and at times completely remedy, their symptoms, through determined application of the intervention guidance. Other men were less responsive, did not see the value in the guidance and were less concerned about addressing their symptoms.

Reflections on the future implementation of lower urinary tract symptoms guidance for men

Clinician interviews reinforced the impression that, although GPs are receptive to self-management approaches, their consultations do not routinely foreground self-management, and the depth and range of self-management approaches offered by different GPs varies tremendously. GPs may be unaware of the extent to which men might be prone to concealing and downplaying LUTS, and the extent to which LUTS might need to be seen as highly stigmatised symptoms of old age that men treat as unworthy of both disclosure and clinical attention. GPs may also insufficiently apprehend the paucity of men’s awareness of self-management guidance, and the lack of access to, and community circulation of, this material. Better understanding, and, in some cases, education in relation to the range of self-management approaches, in relation to LUTS might encourage GPs to offer a greater depth and diversity of self-management, and to better orient consultations around this material.

There remain, however, a number of barriers to the dissemination of LUTS self-management guidance in primary care. GPs’ consultations cover a lot of ground and there are competing interests: necessary tests to rule out other conditions, and requests for PSA tests that require discussion. It is easy for extensive self-management discussion to slip out of a 10-minute consultation. The availability of alternative mechanisms for delivery of this material within the practice, whether nurse or HCA led, through men’s groups or primary care urology clinics, might make it possible to refer men in need of more thorough self-management guidance to settings where these can be more adequately addressed.

Discussion and conclusions

The qualitative study offers insight into men’s LUTS experiences and their outcomes following their contact with primary care, and engagement with the TRIUMPH trial.

Men do not seek what they do not know exists, and so do not attend GPs seeking self-management remedies as they are unfamiliar, and, unless they are willing to trial medication or seek surgery, men do not imagine any useful outcome to seeking clinical care. Men were also often uncomfortable and unwilling to bother their GP about symptoms that were not ‘serious’ or life-threatening. The mundane distress and disruption of LUTS, and association with stigmatised notions of ageing, further discouraged men from seeking clinical care. Instead, men seek GP input because of concerns about prostate cancer, or only after lengthy periods enduring increasingly severe LUTS, or because of blood in urine or a debilitating UTI; consequentially, the consultation tends to orient around a routine series of tests and pharmacological interventions to alleviate acute symptoms. We found that structured, in-depth self-management is not sufficiently embedded within GP consultations and easily slips out of consultations; instead, PSA test discussions, tests to rule out other conditions, medication options and rudimentary caffeine and fluid intake advice predominate. As a consequence, men leave primary care with little but reassurance, or with medication, but rarely with fulsome information, explanation and guidance, and often continue to resignedly tolerate difficult disruptive symptoms.

Men spoke with great enthusiasm about their experiences of the intervention, perhaps because it brought information, explanation and self-management approaches to men who had missed out on these things and were often struggling with neglected symptoms. Those men who were receptive to the guidance (because of their life circumstances, character and LUTS experiences), as well as it alleviating symptoms, were delighted to be better informed, and more in control, able to independently research symptoms and investigate self-management approaches; better able to decide if or when to see their GP; felt less anxious about their symptoms; no longer felt that LUTS indicated inevitable ageing decline; and were encouraged to take action in relation to their health.

There was a willingness to engage with self-help and a sense that this was a good option (compared with surgery or long-term medication). The format of the guidance was appreciated, although some parts were perceived as tricky and many men also found the nurse/HCA support helpful.

Men in the usual-care arm continued to struggle with poorly explained LUTS, without the guidance that might have supported them and without considering it appropriate to return to their GP.

Unexpectedly, some men spontaneously began sharing the content of the booklet with friends, family and acquaintances, offering some additional hope that the wider dissemination of this kind of guidance might begin to overcome men’s stigmatising perception that LUTS is an inevitable part of ageing and unworthy of care, and support a cultural shift in men’s willingness to talk about their LUTS and to share useful information and guidance. Once men know that techniques are available, they might also be more likely to seek these from primary care, instead of PSA tests or urology referral.

The qualitative study indicates that primary care recommendations for the care and treatment of LUTS may need to be reconsidered and refreshed, particularly the misapplication of ‘reassurance alone’, in view of men’s strong tendency to tolerate, downplay and dismiss their LUTS. The diverse range of supportive self-management options needs to be emphasised and disseminated, so these are more widely available to both GPs and their male LUTS patients.

Strengths and limitations of the qualitative study

The qualitative study included a relatively large sample of primary care men and was able to capture diverse and enduring LUTS experiences. It included single, married, divorced and civil partnered men, and the views of men with multiple additional health concerns. The sample was self-selecting within GP cohorts; this appeared to favour (1) men who wanted help in relation to their neglected symptoms and so were receptive, (2) men who had time and capacity to be at ease with completing paperwork and (3) older retired men with relatively comfortable lifestyles. Conversely, the trial included fewer men with the most complex health needs, disabilities and/or caring responsibilities; working men; and unemployed men. In particular, the trial was taken up almost exclusively by men who were white, and the qualitative sample as a result included the views and experiences of only four men who were black, Asian or mixed race. This lack of cultural diversity suggests that focused work targeting diverse UK cultural communities is necessary to address LUTS self-management and support LUTS primary care across diverse UK communities.

The study allowed men to reflect on experiences in-depth and in their own words, taking us beyond symptom measurement and revealing strong support for better guidance and support around LUTS self-care and a willingness to trial self-management approaches.

Interviews with clinicians cohered with men’s experiences, strengthening these findings.

Men provided sensitive and deeply thoughtful accounts of distressing, intimate, embarrassing and stigmatised symptoms, and reflected on the nature of stigma and age in relation to LUTS. Men also responded to the trial guidance, and to the possibility that men might have better access to this material in the future, with tremendous and spontaneous enthusiasm; this was supported by the experiences of HCPs delivering the intervention to trial men. It became an important component of the qualitative study to convey the strength of men’s appetite for this material. Nevertheless, some interviewed men were neither interested nor especially impressed, and it is probable that other men with less positive responses would also have been less willing to speak about their experiences and less likely to engage with the qualitative study as a consequence; the strong social desire to serve a trial well likewise favours more positive and less negative accounts. To counter this concern, the accounts of usual-care men, who did not receive the intervention, reinforced the need for better access to self-help guidance.

Summary of the findings and implications

The study provided insight into knowledge of, beliefs about and experiences of LUTS; GP care and guidance; and men’s awareness of self-management techniques. It revealed insufficient prior focus on self-management, and commensurate inadequacies in physiological and conservative care knowledge and understanding. Interviews with both primary care men with LUTS and with GPs indicated that in-depth, rigorous, structured and targeted LUTS self-management is not yet sufficiently embedded in the primary care of LUTS in men.

Men who received the intervention were willing to trial lifestyle changes and reported positive outcomes that reinforced their willingness to maintain changes and take further self-help action; the guidance appeared to increase men’s self-efficacy and empowerment in relation to their health. Men welcomed the guidance heartily because it addressed neglected symptoms and the sense of despondency attached to LUTS as an inevitable and somewhat depressing symbol of ageing decline that they were otherwise prone to resignedly tolerating, unless symptoms became sufficiently alarming, often in the light of prostate cancer concerns.

Both men’s accounts and those of GPs suggested that men often reach primary care because of prostate cancer concerns, and that self-management is often a more cursory element of GP care, with reference to fluid intake and caffeine, which is far more likely to be discussed than pelvic floor exercises (which both men and GPs associated with women’s rather than men’s LUTS self-management). GP care instead tends to focus on discussions of prostate cancer testing, on testing to rule out other underlying conditions and on medication. Interviews with men and clinicians showed that the full range of in-depth self-management guidance is not yet a cornerstone of primary care consultation, despite that it is supported by both men and their GPs. This suggests that current NICE and EAU clinical guidelines and recommendations are unlikely to be met without cultural change, a change that this intervention demonstrates some power to support.

The trial also found that the clinical guidance around offering reassurance to men with LUTS needs to be clarified; the way this reassurance is offered, and what is offered alongside this in terms of support, guidance and information, need to be more sensitively considered and better practices reinforced. Reassuring men that LUTS is ‘just a normal part of getting old’, without offering further information, support or in-depth guidance on self-management, may serve the aim of alleviating prostate cancer concerns, but strongly risks reinforcing men’s tendency to discount distressing LUTS experiences, and simultaneously strengthens, rather than addresses, the pernicious stigma associated with LUTS, and entangles concepts of age, inevitable decline and urinary dysfunction, thereby reducing the chances that men will seek, share and discover symptom support and alleviation of distress.

In short, the qualitative study strongly supports embedding the trial booklet, guidance and HCP training firmly within primary care, and developing men’s LUTS primary care services within practices, such as nurse- or HCA-facilitated men’s groups or primary care urology clinics to support more thorough and widespread dissemination of self-management guidance, and which are able to support LUTS self-management when this is not feasible within GP consultations. Interviews with men further supported a targeted public health campaign to promote LUTS awareness, discussion and self-management approaches more broadly, in ways that might reach the very large number of men aged > 40 years who, interviews suggest, are prone to tolerating distressing enduring LUTS, believing that LUTS are an inevitable and irredeemable part of ageing that are unworthy of clinical time, and who are not aware of, and so do not seek out, recommended self-management guidance.