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Keywords:

  • LUTS;
  • bother;
  • anxiety;
  • depression

Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. CONFLICT OF INTEREST
  8. REFERENCES

OBJECTIVE

To gain an understanding of men's experiences of having lower urinary tract symptoms (LUTS) and of bother, a principle determinant of whether a patient has an intervention for LUTS.

PATIENTS AND METHODS

Data were collected on 75 patients with LUTS presenting to a urology outpatient clinic. Men completed a questionnaire asking about their symptoms, bother, mood and perceptions about LUTS.

RESULTS

Most participants scored within the normal range for anxiety and depression, and expressed a moderate level of distress. They were to some extent bothered by their symptoms. Most men perceived LUTS as a long-term problem but felt unable to control their symptoms. The results suggest that bother reflects men's overall distress with having LUTS. Bother appears to be related to symptom severity, self perception, social limitation and the impact of LUTS. Embarrassment and social anxiety relate strongly to bother.

CONCLUSION

Several psychological factors relate to bother; it may be possible to reduce bother using a brief psychological intervention.


Abbreviations
HADS

Hospital Anxiety and Depression Scale.

INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. CONFLICT OF INTEREST
  8. REFERENCES

Bother is the principle determinant of whether a patient has an intervention for LUTS over a 3–5 year period [1,2]. In addition, the degree of bother before treatment is the best predictor of response to treatment, and apparently better than physiological, anatomical or urodynamic measures [1]. That severe LUTS can have a substantial effect on quality of life and on sexual function has been well documented [3–6]. However, despite this focus, the conceptual basis for the key construct of bother has received little attention in previous reports. An understanding of what bother is would create opportunities for psychologically based bother-reducing interventions.

Drawing on health psychology, it is known that patients’ understanding of their condition is important in their response to it. Specifically, illness perceptions as identified by the ‘self-regulation’ model [7] have been shown to be significant in determining patients’ adjustment to chronic illness [8,9]. This framework has been used as the theoretical basis of the present study, which aims to identify the psychological components of bother in a group of men attending a urological clinic. The specific objectives were: to measure anxiety, depression, distress and bother in men with LUTS; to examine illness perceptions in men with LUTS; and to identify factors associated with bother.

PATIENTS AND METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. CONFLICT OF INTEREST
  8. REFERENCES

A questionnaire survey method was used in a cross-sectional design. Over a consecutive 7-month period, 125 patients with LUTS who attended the outpatient urology clinics at two London hospitals were identified as suitable to take part in the study and were approached; 103 agreed to participate, of whom 75 returned completed questionnaires (response rate 60%). Patients were excluded if they had any of the following: urinary retention, active UTI, prostate cancer, evidence of psychiatric illness, evidence of alcohol or drug abuse, extreme anxiety or depression, or unable to read and/or write English.

The study questionnaire included demographic details and information about treatment received for LUTS. Men were asked to rate on a Likert scale (see below) the extent of their distress about LUTS, the level of their general health and the extent of their worry about cancer. They were also asked to describe the distressing aspects of their urinary problem. The illness perceptions of timeline, control and consequences were examined, and were elicited using a combination of questions from the Illness Perception Questionnaire [10] and additional questions relevant to LUTS. A 7-point Likert scale was used for all questions, whereby participants had to rate their answer or give their agreement with a statement. Each Likert scale was anchored at either end with words appropriate to the individual question, e.g. ‘Having urinary problems has limited me socially’ (score 1 ‘Strongly agree’ to 7 ‘Strongly disagree’).

The timeline, control/cure and consequences were assessed as follows. Men were asked to indicate whether they thought that their LUTS would continue for days, weeks, months or years, and to agree or disagree with statements about whether their LUTS would be temporary or permanent. The men indicated the extent to which they agreed or disagreed with statements relating to control over their problem and its likelihood of being cured, and their agreement or disagreement with statements about the extent to which LUTS had changed their lives and perception of themselves. In addition men were asked an open question about their perception of the effect of their LUTS on their lives.

The IPSS [11] measures irritative and obstructive symptoms of LUTS, and is both valid and reliable. Clinical threshold scores classify patients as mildly (0–7), moderately (8–19) or severely symptomatic (20–35). Patients completed the Symptom Bother Index [12] which was used to assess bother in the National Prostatectomy audit [12]. Patients rated the extent to which they are bothered by each of the symptoms listed in the IPSS, scoring 0–28.

The Hospital Anxiety and Depression Scale (HADS) [13] was used to measure anxiety and depression. This is a well validated self-assessment screening scale for anxiety and depression developed for use in a hospital medical outpatient setting. There are two scales (depression and anxiety), and individual item scores are summed to give a maximum score of 21 for each of the two scales. The HADS is valid and reliable [14]. Zigmond and Snaith [13] suggested that for each scale scores of <8 are in a normal range, 8–10 borderline ≥ 11 indicate clinically significant levels of depression or anxiety.

Ethical approval was gained from the local research ethics committee. Referral letters and medical notes of patients with an appointment in the clinic were examined. Those patients who appeared to have LUTS were identified and approached to take part in the study. The researcher checked with the patient that they did not meet the exclusion criteria. If the patient was suitable the study was explained and written consent obtained. Questionnaires were given to patients to complete in the clinic but when necessary patients were given a stamped addressed envelope, and asked to complete the questionnaires at home and return them by post.

The quantitative results were analysed using standard statistical software; Spearman correlation coefficients are reported because data on some items were not normally distributed. Content analysis was used to assign the data from the open-ended questions to categories.

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. CONFLICT OF INTEREST
  8. REFERENCES

The mean (sd, range) age of the men was 65.0 (10.82, 39–89) years; most (65, 87%) described themselves as white, three (4%) as black and two (3%) as Asian, with another five (7%) describing themselves as having another ethnic background. Most of the men (47, 63%) were married or living with a partner, 14 (19%) were single and two (3%) were in a relationship but not living with their partner. Four (5%) of the men were separated or divorced and eight (11%) were widowed. Most men were well educated, with 25 (33%) having a qualification at degree level or above. Twenty-one men (28%) were in full-time employment, with 15 (20%) working part-time, 34 (45%) retired and five (7%) unemployed.

The mean (sd) IPSS was 15.22 (7.39) with 11 (15%) men classed as having mild, 41 (55%) moderate and 22 (30%) severe symptoms. The mean score for irritative was 6.87 (3.2) and for obstructive symptoms 8.35 (5.32).

At the time of completing the questionnaire, 30 (40%) of the men had had no treatment and nine (12%) had been investigated. Of the remainder, 30 (40%) had been treated with antibiotics or ‘tablets’, two (3%) had had an operation and three (4%) had tried homeopathic treatment or diet (data were missing for one man). The mean rating of general health was 4.87 (1.44), where 1 is ‘very poor’ and 7 ‘very good’.

Mean scores for anxiety, depression, distress and bother suggested that overall the group was not highly anxious or depressed, although the clinical thresholds showed that some men had clinically significant scores. The mean anxiety and depression scores were 6.38 (4.50) and 4.49 (3.60), respectively. On the HADS anxiety scale 15% scored within the borderline and 18% in the clinical range. This compares with clinical anxiety scores in 19% of cardiology patients and 36% of those with back pain [14], and 12.6% of the general population [15]. On the HADS depression scale, the frequencies were 14% and 5% in the borderline and clinical range, respectively (i.e. 19% in the borderline or clinical range). This compares with borderline or clinical depression scores in 17% of cardiology patients and 29% of those with back pain [14] and 11.4% of the general population [15].

The mean rating on the distress scale was 3.52 (1.84), where 1 is ‘not at all distressing’ and 7 ‘extremely distressing’, suggesting that men were moderately distressed by their condition. Twenty-four men (32%) rated themselves as distressed to some degree by their LUTS (i.e. scoring 5–7 on the distress scale) with seven (9%) rating themselves as extremely distressed. The mean Symptom Bother Index was 10.42 (7.24). Men were also asked to rate ‘the extent to which you worry that cancer might be causing your symptoms’; the mean rating was 3.56 (2.33), where 1 is ‘not at all’ and 7 ‘a lot’).

Men most commonly thought their LUTS would last for years (80%) rather than days (none), weeks (none) or months (9%); 11% said they did not know how long it would last. Percentage agreement and disagreement on the timeline items is given in Table 1; these support the men's view of LUTS as a long-term problem. The percentage agreement for the control and cure items, and the consequences statements are also given in Table 1.

Table 1.  The percentage agreement and disagreement on timeline, consequences and control/cure items
ItemsAgreeNeutralDisagree
  1. Rating scale: 1, strongly agree; 7, strongly disagree. Scores of 1–3 indicate agreement, 5–7 disagreement and 4 is neutral.

Timeline
My condition is temporary 15.117.867.1
My condition changes over time 37.817.644.6
My condition is permanent100 0 0
Consequences
Having urinary problems has:
Made me feel old 38.412.349.3
Limited me socially 26.0 6.967.1
Affected my relationships 22.6 5.671.8
Has changed the way I feel about myself 33.815.550.7
Has not had much affect on my life 52.1 8.239.7
Has had a big impact on my life 20.617.861.6
Has adversely affected my sex life 37.1 8.654.3
Has become easier to live with 48.616.734.7
Has serious economic and financial consequences 12.5 8.379.2
Has strongly affected the way others see me  11.4 8.680.0
Has made me feel anxious about being with other people 16.4 5.578.1
Has made me feel embarrassed about being with other people 15.1 4.180.8
Has stopped me from going out so much 22.5 8.569.0
Has stopped me from going on holiday  11.3 5.683.1
Other people have noticed my problem 17.2 7.175.7
Other people have commented on my problem 15.9 4.479.7
Control/cure
There is a lot which I can do to control my symptoms 31.014.154.9
There is very little that can be done to improve my illness 30.410.259.4
My treatment will be effective in curing my urinary problems 37.732.829.5
Recovery from my urinary problems largely depends on chance or fate 13.214.772.1
What I do can determine whether my urinary problems get better or worse 47.125.027.9

Responses to the open question ‘What effect has having urinary problems had on your life?’ were categorized and the frequency of response for each category given in Table 2. Most frequently men stated that LUTS had little or no impact on their lives, and several used expressions suggesting a minor impact, e.g. ‘inconvenience’, ‘nuisance’ or ‘irritating’. Next most commonly cited was the impact of LUTS on sleep and the need to awake in the night, along with the effect of LUTS on their lives; some referred specifically to the effect on work and social life, e.g. ‘very disruptive of social and business activity’, while others made more wide ranging statements, e.g. ‘it has damaged my lifestyle’. The need to pre-plan trips so that lavatories are available was mentioned, as was the avoidance of situations because of a lack of lavatories.

Table 2.  The content analysis of responses to the open questions ‘What effect has having urinary problems had on your life?’ and ‘What aspects of the problem cause you most distress?’ Some men gave more than one response
Effect or aspectFrequency (%)
  • *

    Includes lack of control, uncertainty, embarrassment.

Effect on life (69 men)
None/not much21 (30.4)
Impact on social and/or work life/lifestyle change17 (24.6)
Sleep disturbance17 (24.6)
Emotional impact13 (18.8)
Description of impact 9 (13.0)
Sexual problems 5 (7.2)
Physical symptoms 4 (5.8)
Distress (73 men)
Disruption of waking and getting up in the night19 (26.0)
Need to plan and to find toilets, change in lifestyle and inconvenience18 (24.7)
Urination, e.g. frequency, urgency, starting16 (21.9)
Pain/discomfort 9 (12.3)
No distress 8 (11.0)
Worry about cancer 5 (6.8)
Worry, fears of future deterioration 5 (6.8)
Wetting, leaking, hygiene 3 (4.1)
Other factors*10 (13.7)

Emotions relating to LUTS included fear, anxiety and worry about the future (e.g. ‘apprehension of impending problems’), about deterioration (e.g. ‘anxiety about it becoming worse’) and about leaving the house. Feelings of embarrassment, helplessness and loss of confidence were also mentioned. LUTS was perceived by some men to have had an impact on their sex lives, e.g. one participant described ‘some loss of sexual confidence and performance’. For a few men the effect of LUTS was perceived in terms of specifically physical aspects, e.g. pain or the length of time spent urinating.

A content analysis of men's responses to the question ‘What aspects of the problem cause you most distress’ is also shown in Table 2. Night-time disruption, the need to plan and the symptoms themselves (e.g. frequency, urgency, starting) were most commonly cited as causes of distress.

As night-time waking was identified by men as being a disruptive and distressing element of having LUTS, scores from the IPSS relating to nocturia are given in Table 3. The results show that very few men experienced nocturia as their only or major symptom.

Table 3.  The frequency (%) of IPSS on the nocturia item in relation to the total IPSS excluding the nocturia item
IPSS excluding nocturia scoreNocturia scoreTotal
mild (0–1)moderate (2–3)severe (4–5)
mild (0–6) 4 (5.3) 7 (9.3) 2 (2.7)13 (17.3)
moderate (7–18)15 (20.0)21 (28.0) 5 (6.7)41 (54.7)
severe (19–30) 5 (6.7)12 (16.0) 4 (5.3)21 (28.0)
Total24 (32.0)40 (53.3) 11 (14.7)75 (100)

Bother was correlated with those items which the health psychology literature in general, and the illness-perceptions literature in particular, suggest may be significant to individuals who have a chronic condition; Table 4 shows these correlations. The results suggest that bother is most closely related to distress and symptom score. It is also significantly related to specific consequences of having LUTS, anxiety and embarrassment, and self-perception.

Table 4.  Spearman's correlation coefficient between bother and other variables
Itemr
  • *

    P < 0.01;

  • P < 0.001.

Anxiety0.36
Depression0.36
Distress0.75
Cancer worry0.17
IPSS total0.79
IPSS irritative0.59
IPSS obstructive0.71
IPSS nocturia item0.14
General health rating−0.34
Perceived control of symptoms0.15
Recovery dependent on chance or fate0.34
Having urinary problems has:
Changed the way I feel about myself−0.31
Strongly affected the way others see me−0.21
Had a big impact on my life−0.43
Adversely affected my sex life−0.23
Affected my relationships−0.30*
Made me feel old−0.17
Limited me socially−0.40*
Stopped me from going on holiday−0.28*
Made me feel anxious about being with other people−0.42
Made me feel embarrassed about being with other people−0.46

DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. CONFLICT OF INTEREST
  8. REFERENCES

Most men in this study scored within the normal range for anxiety and depression. Despite this, scores for a minority were indicative of clinical levels of anxiety and to a lesser extent depression. The men expressed moderate distress about their LUTS and were to some extent bothered.

The results suggest that LUTS is perceived as a long-term problem, indicating that men are realistic about this aspect of their condition. While most men felt unable to control their symptoms, almost half felt that they had some control over the course of their condition. In apparent contrast to this, it appears from their comments that many men take steps to control their symptoms, or at least the impact of their symptoms, through planning.

Night-time and sleep disturbance emerged as a major issue, both as a consequence of having LUTS and as a cause of distress. While waking several times in the night was of itself the problem for many, some men felt that the disturbance was detrimental to their relationship and that the disruption for their partner was also significant. The need to plan and the lifestyle changes that accompany LUTS were also seen as both a consequence of LUTS and a cause of distress. For some men LUTS had led to anxiety and embarrassment about social situations, had stopped them from going out as much and had adversely affected their sex life. This is consistent with findings that BPH has an impact on quality of life [3–6]. A third of men acknowledged that LUTS had affected their self-perception.

More positively, many men felt that LUTS had become easier to live with, possibly indicating that they had developed strategies of symptom management. Alternatively, with time men may have a reduction in anxiety about their symptoms and thus attend to them less. Although about a third of men felt that LUTS had not had much affect on their lives, 40% agreed that it had a major impact on their life, indicating widely differing experiences.

The results suggest that bother reflects men's overall distress with having LUTS and is related to perceived symptom severity. It appears that bother is distinct from worry about cancer but seems to be related to self-perception, social limitation and the impact of LUTS. Despite a considerable number of men agreeing that LUTS had made them feel old, this feeling appears unrelated to bother. Also unrelated is the number of times men get up in the night to urinate. Embarrassment and social anxiety related strongly to bother, suggesting that feelings of shame may play a role in men's discomfiture.

The symptom scores suggest that this population is typical of those attending urology clinics in the UK. However, it may be that they had a higher level of education than might be expected from a representative sample of the general male population. Overall, the men in the present study appeared to have reasonably good general health, although most had other health problems. Contrary to expectation, the men did not appear to be particularly worried about cancer, although no information is available about the extent to which they may already have had reassurance about this.

The findings indicate possible areas for psychological intervention which might help patients to manage their symptoms better and be less bothered. For example, helping men to develop strategies to manage social and work situations and night-time disruption would be of use. For those who feel a significant impact on self-esteem or a sense of shame, psychological intervention aimed at addressing these issues may alleviate distress and reduce bother.

This study provides a starting point in understanding the psychological elements of bother. At this stage it is difficult to make a definitive statement about what bother is, but it is clear that it extends beyond quality of life. The severity and limiting effect of men's symptoms have an important role in bother, but their thoughts and beliefs about their condition, and its impact on themselves and their lives, are also important. Further work is required to develop appropriate ways of assessing individual experiences and needs within the context of a urology clinic. Simply focusing on quality of life does not take account of the meaning which LUTS has for the individual. The findings of this study clearly support the notion that bother is in part a psychological construct and might in some cases be amenable to reduction via psychological rather than medical or surgical means. Investigation is warranted into the effectiveness of developing watchful waiting, to include more information, coping skills and strategies in reducing bother.

REFERENCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. CONFLICT OF INTEREST
  8. REFERENCES