An interesting study from the UK explores the meaning men attach to their experiences of having LUTS and to understand the meaning of the word bother in this context. Their findings are very helpful to clinicians, and perhaps to people constructing clinical trials in the future. A second report assesses the bothersomeness and impact on quality of life of urinary incontinence in women in France, Germany, Spain and the UK. The author concluded from their study that when determining the most appropriate management strategy doctors should consider the experience of being incontinent as being unique to each individual.
To explore the meaning that men attach to their experiences of having lower urinary tract symptoms (LUTS) and to understand ‘bother’ in the context of those meanings.
PATIENTS AND METHODS
Sixteen men with symptoms suggestive of LUTS and/or an enlarged prostate were recruited from the outpatient urology clinic of a London teaching hospital. They were assessed before or shortly after their first appointment, during which demographic information, including age, occupation, marital status and ethnicity, was obtained and an individualized repertory grid was completed. Each man also completed the International Prostate Symptom Score, which included an item measuring overall bother, and the Hospital Anxiety and Depression Scale.
Most participants held very negative views about what it meant to have prostate problems and viewed them as being associated with old age. Nevertheless, they also had reasonably high levels of self-esteem. However, there was evidence that these had been higher before they had prostate problems, and that self-esteem might decline over time. Bother was related to symptom scores and to anxiety. Also, a perception that other people, particularly their partner, saw them in a more negative light because of their symptoms was associated with higher levels of bother.
The findings suggest that men attempt to preserve a sense of a relatively youthful and intact ‘self’ in the face of advancing years and a progressive disease that was viewed as being associated with old age. Overall, these men had a reasonably secure self-image and they deployed a range of cognitive strategies to maintain this. Bother appears to be a combination of symptom severity, psychological distress, negative evaluations of the condition and beliefs about the reactions of others. Reducing anxiety and challenging negative stereotypes and expectations that others would view them negatively if their problems were known might reduce bother. Attending to these factors could enable watchful waiting to be optimized by reducing bother. Trials to evaluate interventions drawing on these principles would be valuable.
Hospital Anxiety and Depression Scale.
When LUTS in men are mild or moderate, treatment decisions are often based on how ‘bothered’ an individual is by his symptoms. Men reporting high levels of bother may receive surgical treatment while men reporting low levels will be assigned to watchful waiting . Additionally, the degree of bother appears to be correlated with the extent to which men will benefit from surgery . However, there does not appear to be a link between the degree of bother and any objective clinical measure of symptoms, e.g. flow rates [1,2]. This suggests that bother is determined by factors additional to physical symptoms. Furthermore, despite the clinical value of the concept, it is not clear what bother is, or what contributes to it. Patients are often simply asked to indicate how bothered they are by their symptoms. If the concept of bother can be clarified and the factors contributing to it identified, it might be possible to use this information to optimize watchful waiting and to reduce the need for surgery. We explored the concept from the patient's perspective and therefore adopted a qualitative approach, using personal-construct psychology; this postulates that each person has a conceptual framework that he/she uses to make sense of the world . The repertory grid was devised as a method of exploring personal construct systems, and has been used widely, both as a research tool and as a component of psychological therapy . Constructs are the descriptors an individual uses to make sense of his or her world. Each person's construct system is composed of a finite number of bipolar constructs , e.g. good/bad or happy/sad. By exploring the kinds of constructs that people use to describe themselves and others it is possible to gain a picture of the most important aspects of a situation to them. The aim of this study was to explore the meaning that men attach to their experiences of having LUTS and to attempt to understand ‘bother’ in the context of those meanings.
PATIENTS AND METHODS
Men were recruited from the outpatient urology clinic of a London teaching hospital. The inclusion criteria were: symptoms suggestive of LUTS and/or enlarged prostate; no evidence of prostate cancer; age ≥ 50 years; had not previously undergone prostate surgery; no evidence of a UTI; no evidence of psychiatric illness; no evidence of alcohol or substance abuse; able to speak and understand English.
Men were identified by letters to their GP; the aim was to invite men to participate as soon as possible after referral to secondary care. The population that we were trying to identify were those men with uncomplicated LUTS, i.e. men with no UTI or risk of prostate cancer. Men were screened for these before interview, although we acknowledge that the men who took part in the study were not formally assessed for the presence or absence of prostate cancer or UTI.
Fifty-five men met the criteria and were each sent a letter explaining the study, and an information sheet. Those who were interested completed and returned a reply slip indicating either that they would like to participate or that they would like further information about the study. Those men who replied were contacted by telephone to discuss the research in more detail and to arrange an appointment. Twenty-eight men (51%) replied to the invitation to participate. Of these, 12 were not recruited either because they declined to participate after discussion, or because they failed to meet the inclusion criteria. A final sample of 16 men was recruited. The study was reviewed, and consent given, by the Local Research Ethics Committee.
Each participant was individually assessed either before or shortly after his first appointment, but before receiving any results. In the course of the assessment demographic information, including age, occupation, marital status and ethnicity, was obtained from all participants and an individualized repertory grid completed. During this time each participant also self-completed both the IPSS , which included an item measuring overall bother, and the Hospital Anxiety and Depression Scale (HADS) .
REPERTORY GRID PROCEDURE
The repertory grid technique makes use of elements to investigate the constructs that people use to make sense of the world. These elements can essentially be anything, but as the intention in the present study was to examine perceptions of self and others, the chosen elements in this instance were people, e.g. a ‘typical man with prostate problems’ and ‘typical old man’ (see Appendix for a complete list). All participants were presented with the same set of elements (people), each being printed on a separate card. Constructs were elicited by presenting the participant with a combination of three elements (people) and asking them to identify an important way in which two were similar and different from the third. For example ‘self now’ and ‘ideal self’ might differ from ‘typical old man’ in being independent. This procedure was repeated with different three-card combinations until no new constructs were elicited. Each construct was then made into a seven-point numeric scale and participants rated each element (person) on each construct.
The relationships between constructs and among elements for each grid were examined using a standard grid analysis package, Flexigrid6 . Elements were mapped in a two-dimensional space and distances between elements in this space measured. A distance of <0.8 suggests that two elements are viewed as similar by the participant, while a distance of >1.2 suggests that two elements are viewed as dissimilar .
The mean (range) age of the participants was 64.4 (56–80) years; seven were professionals, seven retired and two unemployed. Seven were married at the time of the study, seven were living with long-term partners and two were widowed. One participant's IPSS indicated that he was severely symptomatic, 10 scored within the moderately symptomatic range and five within the mildly symptomatic range.
Table 1 presents the three constructs for each participant that most fully described the ‘typical man with prostate problems’. Given that these are descriptions of people not symptoms, it is striking that most of these constructs are very negative in tone, e.g. Participant 16 used phrases such as ‘Is old; Tired and worn out; Unhappy’.
|01||Not physically active; unwell; demanding of self/others|
|02||Ongoing medical condition; self-seeking|
|03||Concerned about health; burdened with difficulties; reclusive|
|04||Unfit; no sense of humour; finds it difficult to cope|
|05||Can’t look after self; feels socially left out; cautious|
|06||Has real ailments; loves routine; riddled with medical problems|
|07||Checking waterworks; disturbed sleep; young at heart|
|08||Grumpy; likely to stay indoors; irritable|
|09||Worries about physical problems; content to stay at home; financial worry|
|10||Walks around like a zombie; enjoys life; doesn’t boast|
|11||Has unexciting life; incontinent; unemotional|
|12||Does not go out; thinks of self as old; laid-back|
|13||Bit of a moaner; bit of a bore; lazy|
|14||Problems distort them; has integrity; nice|
|15||Has health problems; always tired; can get in a state|
|16||Is old; tired and worn out; unhappy|
Table 2 presents the inter-element distances across the group in relation to how they construed the typical man with prostate problems; the latter is construed as dissimilar to the ideal self, but also dissimilar to the disliked person. However, the typical man with prostate problems is construed as similar to the typical man of their own age and to the typical old man, indicating that these men associate having prostate problems with being old.
|Construct||Median (range) inter-element distance|
|Typical man with prostate problems|
|Typical man my age*||0.79 (0.50–1.34)|
|Old man*||0.67 (0.47–1.31)|
|Self before||0.97 (0.68–1.36)|
|Self now||1.14 (0.41–1.46)|
|Self in 5 years||0.97 (0.48–1.29)|
|Typical man my age*||0.64 (0.38–1.82)|
|Self seen by others*||0.51 (0.33–0.78)|
|Self before prostate:|
|Self in 5 years:|
|Typical old man|
|Typical man my age*||0.75 (0.37–1.18)|
|Self before||1.18 (0.72–1.44)|
|Self now||1.1 (0.75–1.33)|
|Self in 5 years||0.92 (0.55–1.25)|
Table 2 also presents inter-element distance scores showing how the group as a whole construe themselves in relation to stereotypes of a man with prostate problems. The ‘self before prostate problems’ is seen as neither similar nor dissimilar to the man with prostate problems, while the ‘self now’ is seen as less similar to the man with prostate problems. However, participants anticipated that in 5 years they would be more similar to the man with prostate problems than they are now. Furthermore, whilst having prostate problems is not what the men would wish for their ideal selves, it is what they expect for a typical man of their age.
Self-concept was explored by examining inter-element distances between ‘self now’ and ‘ideal self’, ‘disliked person’, ‘typical man my own age’ and ‘self seen by others’; Table 2 shows the median (range) scores. These suggest that, as a group, the men viewed themselves now as reasonably similar to their ideal self, dissimilar to the disliked person and very similar to the typical man of their own age and the self as seen by others. This pattern suggests that the men have a reasonably high level of self-esteem. Changes in self-concept were explored to establish whether the men saw prostate problems as affecting their sense of self over time; ‘self before prostate problems’ and ‘self in 5 years’ were examined in relation to ‘ideal self’ and ‘disliked person’ (Table 2). The results indicate that participants saw themselves before developing prostate problems as being similar to their ideal but as growing more dissimilar over time.
Given that prostate disease is often associated with old age and that these men construed the typical man with prostate problems as similar to the typical old man, inter-element distances in relation to the typical old man were also examined (Table 2). The typical old man was construed as dissimilar both to the ideal self and to the disliked person. There was a trend towards viewing the self as becoming increasingly similar to the typical old man over a period of time (Table 2). Nevertheless, even in 5 years the ‘typical man my age’ was seen as being more similar to ‘the typical old man’ than was the self.
Relationships between the IPSS bother score, HADS scores and mean inter-element distances on key grid pairings were examined using Spearman correlation coefficients; Table 3 presents the significant correlations. There was a significant positive correlation between the bother score and anxiety but not between the bother score and depression. This suggests that the IPSS bother scale may reflect the same issues as the HADS scale. The significant positive correlation between the bother score and ‘self now – partner’ shows a trend for men to be more bothered if they thought that they were dissimilar to their partner. The significant positive correlation between bother score and ‘self now – self seen by others’ indicates a trend for men to be more bothered if they thought that people saw them differently to how they saw themselves.
Most participants held very negative views about what it meant to be a man with prostate problems, as reflected in their constructions of the typical man with prostate problems. They also viewed prostate problems as associated with old age, in that the typical man with prostate problems was construed as similar to the typical old man. They did not consider themselves to be similar to the typical man with prostate problems and most did not view themselves as old, suggesting an attempt to avoid seeing themselves in such negative terms. The finding that being like the typical man with prostate problems or the typical old man was not something they would want for their ‘ideal self’ supports this interpretation. Perhaps surprisingly they saw themselves currently as being less like the typical man with prostate problems than was the case before they had prostate problems. This suggests an attempt to deny that they currently had symptoms that made them similar to the typical man with prostate problems. It may also represent a hope that the specialist clinic would offer successful treatment. However, these men anticipated being more similar to the typical man with prostate problems in 5 years time, indicating a pessimistic assessment of the future course of the disease. Nevertheless, the results indicate that the participants had reasonably high levels of self-esteem, although these had been higher before they had prostate problems. That they anticipated becoming less like their ideal self in the future indicates that self-esteem might decline over time.
These findings suggest an attempt to preserve a sense of a relatively youthful and intact self in the face of advancing years and a progressive disease that is viewed as being associated with old age. Further evidence of the desire to preserve the sense of self is the significant positive correlation between ‘bother’ score and ‘self – self seen by others’, indicating that men may be more bothered if they believe that others view them differently (presumably as a consequence of their symptoms). There was also a significant positive correlation between bother and the inter-element distances ‘self now – partner’, indicating that social embarrassment and the effect of symptoms on intimate relationships are relevant to understanding bother.
Overall these men had a reasonably secure self-image and reasonable levels of self-esteem. This suggests that they are not constitutionally negative, which argues against an interpretation of the present results in terms of a self-selected group of men with a depressive personality style. Nevertheless, the men deployed a range of cognitive strategies to maintain this essentially positive outlook, including distancing themselves from typical old men and typical men with prostate problems. Bother emerges as a complex construct. As might be expected, it was related to symptom scores and, in addition, it was related to anxiety. A perception that other people saw them in a more negative light because of their symptoms was associated with higher levels of bother. This was particularly so if they believed that their partner saw them in a negative light. It is perhaps not surprising that they were concerned about the negative evaluations of others, given that they themselves had such a negative perception of the typical man with prostate problems. Bother therefore appears to be a combination of symptom severity, psychological distress, negative evaluations of the condition and beliefs about the reactions of others.
The sample of men included in this study was restricted in terms of socioeconomic status and symptom severity; many were professionals and most were mildly symptomatic. It would be useful to replicate this work with a more diverse sample. Nevertheless, the methods used allowed us to move beyond overall quality-of-life measures to explore perceptions at an individual level. Additionally, the quantitative aspect allowed the exploration of relationships between symptom severity, perceptions and distress.
There is evidence that the impact of symptoms is closely related to bother . The present findings suggest that reducing anxiety and challenging negative stereotypes and the expectation that others would view them negatively if their problems were known, might reduce bother. Attending to these factors could enable watchful waiting to be optimized by reducing bother, and it might then be possible for some men to avoid or postpone the need for surgery. Trials to evaluate interventions drawing on these principles would be valuable. Also, future research should attempt to determine the causal links between the various factors found to contribute to bother.
CONTRIBUTORS AND GUARANTORS
Kenneth Gannon and Lesley Glover developed the original idea for the programme of research, of which this paper is one output, took the lead in devising this study and were responsible for the final draft of the paper. They are joint guarantors of the study. Marie O’Neill was involved in developing the methodology, collected the data, conducted the bulk of the analysis and produced an initial draft, upon which this paper is based. Mark Emberton participated in the planning and design of the study, was responsible for recruiting the participants and participated in the preparation of this paper.
We thank Dr Chris Barker of University College London for his advice concerning the analysis of the repertory grids. This study did not receive external funding.
CONFLICT OF INTEREST
The grid elements presented to participants.
My Ideal Self.
Me before prostate problems.
Me in the prime of my youth.
Me in 5 years time.
Me at work.
Me as close family/friends see me.
A person I admire.
A person I dislike.
A typical man of my age.
A typical old man.
A typical man with prostate problems.
A typical man without prostate problems.