Family Practice Advance Access originally published online on October 1, 2004
Family Practice 2004 21(6):617-622; doi:10.1093/fampra/cmh607
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Family Practice Vol. 21, No. 6 © Oxford University Press 2004, all rights reserved.
Prevalence of distress and symptom severity from the lower urinary tract in men: a population-based study with the DAN-PSS questionnaire
a Uppsala University, Department of Public Health and Caring Sciences, Uppsala Science Park, b Centre for Clinical Research, Uppsala University, Central Hospital, Uppsala, c Department of Caring and Public Health Sciences, Mälardalen University, Västerqs, d Clinical Cancer Epidemiology, Department of Oncology-Pathology and e Division of Urology, Centre for Surgical Sciences, Karolinska Institute, Stockholm, Sweden.
Correspondence to Gabriella Engström, Department of Caring Science, Mälardalen University, Box 325, S-63105 Eskilstuna, Sweden; Email: gabriella.engstrom{at}mdh.se
Received 26 May 2004; Accepted 20 July 2004.
Engström G, Walker-Engström M-L, Henningsohn L, Lööf L and Leppert J. Prevalence of distress and symptom severity from the lower urinary tract in men: a population-based study with the DAN-PSS questionnaire. Family Practice 2004; 21: 617–622.
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Abstract |
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Background. Lower urinary tract symptoms (LUTS) are a common and costly public health issue. The prevalence varies greatly in published reports. The distress caused by each symptom is important to assess the primary care required before therapeutic decisions or a referral to an urologist are made.
Objectives. LUTS are highly prevalent in men, but less is known regarding the distress caused by each symptom. The aim of this study was to examine symptom severity and different levels of distress using the Danish Prostatic Symptom Score (DAN-PSS) questionnaire in men affected by symptoms from the lower urinary tract.
Methods. The study included all men aged 41–81 years (n = 504) that, 12 months earlier in a population-based survey, had reported stress incontinence, urgency or post-micturition dribbling in a postal questionnaire. The DAN-PSS questionnaire was used to measure severity and distress from LUTS.
Results. In total, 311 (80%) of the 387 responders who reported at least one symptom experienced some level of distress. The most distressing symptom overall was urinary incontinence. Nine of 10 men with storage symptoms (stress, urge and ‘other’ urinary incontinence) reported distress even if the symptom occurred only seldom. Moreover, two-thirds of the men with the most frequent symptom, post-micturition dribbling, characterized their symptom as moderate or severe; the most distressing voiding symptom was weak stream. In general, LUTS were well tolerated.
Conclusion. Urge incontinence was the most distressing LUTS even when occurring only seldom. The DAN-PSS questionnaire may be a potentially useful tool for health professionals to identify patients with pronounced distress from LUTS to offer therapeutic and nursing care on the relevant level.
Keywords. DAN-PSS, distress, LUTS, population-based, postal questionnaire.
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Introduction |
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Symptoms of the lower urinary tract (LUTS) in men are highly prevalent in industrialized countries.1–4 The overall prevalence of LUTS varies greatly in published reports in different countries, ranging from 23 to 89%.3–7 Thus, even though LUTS are highly prevalent in men, little is known regarding the distress caused by each symptom. In 2002, the International Continence Society (ICS) established a new standardization of the criteria for LUTS. The ICS recommends that the impact of a symptom should be measured apart from symptom characteristic, i.e. social impact, effect on hygiene and effect on quality of life (QoL).8 The Danish Prostate Symptom Score (DAN-PSS), a self-administered questionnaire, was introduced in 1991 to fulfil the recommendations of the International Consensus Committee.9 The DAN-PSS evaluates not only existence of symptom characteristics but also each specific subjective experience of the corresponding level of distress. The aim of this study was to examine symptom severity and different levels of distress using the DAN-PSS questionnaire in men affected by storage and/or voiding symptoms.
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Methods |
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Study population
A study was performed in 1997 in the rural community of Surahammar, Sweden (11 200 inhabitants) where all men (2571) aged 40–80 years were asked whether they had experienced stress incontinence, urgency or post-micturition dribbling during the preceding 12 months.10 Of the 2571 men, 536 reported at least one symptom. Thirty-two of these men either moved from the community or died during the following 12 months (Fig. 1). In the present study, the remaining 504 men were invited at this time to complete the DAN-PSS self-administered questionnaire in their home environment. A postal reminder was sent twice to those not replying within 6 weeks.
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The DAN-PSS questionnaire
The DAN-PSS questionnaire includes 12 items on urine voiding and storage symptoms as well as the perceived distress level corresponding to each specific symptom. Four questions deal with voiding symptoms (hesitancy, weak stream, bladder emptying and straining), four with storage functions (frequency, nocturia, urgency and urge incontinence) and four with miscellaneous symptoms (pain, post-micturition dribbling, stress incontinence and ‘other’ incontinence). Scores on symptom characteristics ranged from no symptom (a score of 0) to maximum symptom (a score of 3). Each of the 12 questions on symptom severity was followed by a question related to distress due to the specific symptom. Distress related to a specific symptom was classified as no distress (a score of 0), low distress (a score of 1), moderate distress (a score of 2) or major distress (a score of 3).
Urge incontinence, stress incontinence, ‘other’ incontinence, hesitancy, incomplete emptying, straining, dysuria and urgency were classified as mild (a score of 1) when the symptom was reported to occur seldom, moderate (a score of 2) when the symptom occurred often, and severe (a score of 3) when the symptom was reported to occur always. The term ‘other’ incontinence, in DAN-PSS measured by a specific question, is supposed to capture overflow and ‘seeping’ incontinence.9
Weak stream was classified as mild (a score of 1) when the urine beam was weak, moderate (a score of 2) and severe (a score of 3) when the urine beam was very weak or dribbling, respectively.
Daytime frequency was classified as mild (a score of 1) when the interval between two urinations was, <3 h, moderate (a score of 2) and severe (a score of 3) when the interval was <2 or <1 h, respectively.
Nocturia was classified as mild (a score of 1) when the frequency was 1–2 times during sleep, moderate (a score of 2) and severe (a score of 3) when the frequency was 3–4 or >5 times during sleep, respectively.
Post-micturition dribbling was classified as mild (a score of 1) when the dribbling was reported to occur in the toilet, moderate (a score of 2) and severe (a score of 3) when the urine was reported to occur in small or large amounts, respectively, in the person's trousers.
Distress related to a specific symptom ranged from no distress (a score of 0), to major distress (a score of 3). A total symptom score ranging from 0 to 36 was obtained by adding the symptom scores from the 12 questions. The total distress score was obtained in the same way. In order to rank which of the symptoms cause greatest distress, we used the ‘mean distress score’. The score was built up as the sum of the distress points for each individual in both symptom groups and divided by the total number of participants suffering from this symptom.
The DAN-PSS questionnaire has shown a high degree of construct validity in the correlation with the Madsen– Iversen score system (rs = 0.51) and with the patients answers to questions about how bothersome their symptoms were (rs = 0.71).11
The ethics committee of Uppsala University approved the study.
Statistics
The Spearman ranks test was used to study correlations between total distress and total symptom score. Mann–Whitney U-test was performed to test differences between the age groups (41–50, 51–60, 61–70 and 71–81 years). A P-value <0.05 was accepted as statistically significant. Values are presented as mean ± SD.
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Results |
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Characteristics of the sample
In total, 77% (387 of 504) of the men completed the questionnaire. The mean age of the responders was 59.6 ± 10.7 years and that of the non-responders 56.1 ± 10.4 years. Fifty-one percent of the respondents were employed, 42% were retired, 5% were unemployed and 2% did not answer the question. Eighty-five percent of the men were married or living in a common law marriage. Elementary school was completed by 63% of the men; higher secondary school was completed by 20% of the men and university studies by 15%. Two percent of the men did not respond to the question about education. Twenty percent of the men were smokers and 49% reported physical activities at least twice a week.
Twenty-six percent of the men reported 1–4 LUTS. Forty-eight percent of the men reported 5–8 symptoms; and 20% of the men reported >8 symptoms. Six percent of the men reported no LUTS despite having experienced stress incontinence, urgency or post-micturition dribbling 1 year earlier.
Symptom score
Post-micturition dribbling and urgency were the two most common symptoms among the participants, at 86 and 69%, respectively (Table 1). Stress and ‘other’ incontinence were the least frequent symptoms and were reported by 15 and 18%, respectively. Among men with post-micturition dribbling, 63% (209 of 332) reported a symptom score of 2 (small amounts in the trousers) or 3 (large amounts in the trousers). Of the men reporting urgency, 34% (91 of 265) had a score of 2 (daily) or 3 (always). None of the 387 men reported severe symptoms (a score of 3) for stress or ‘other’ incontinence. The medians for the total symptom scores were generally low and varied between 7 and 10 in the different age groups, with a score of eight for the whole study population. The mean value for the total symptom score was significantly higher in the oldest age group (71–81 years) compared with the other age groups. Forty-six percent of the men (179 of 387) had a total symptom score of 
7, and 8% (31 of 387) had a total symptom score of >15.
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Distress score
The number of men with different levels of distress due to LUTS is shown in Table 1. Twenty percent reported no distress in spite of the presence of symptoms. The distress scores increased as symptom scores increased (r = 0.85, P < 0.001). The median for the total distress scores varied between 3 and 7 in the four age groups, with a median total score of 5 for all age groups. A total distress score below 6 and over 20 was represented in 52 and 5% of the men, respectively.
Distress overall (low, moderate and major) was reported by 90% (120 of 134) of the men who had urge incontinence. Of those who had a symptom score of 
2, 63% (22 of 35) reported major distress. One-third of the men with urge incontinence and a symptom score of 1 reported major distress (Fig. 2). Concerning the other incontinence symptoms (stress incontinence and ‘other’ incontinence), all men with a symptom score of 2 reported distress at any level. All men with weak stream who had a symptom score of 2 reported distress. Fifty-five percent of those who had a symptom score of 1 reported distress at a level of 2. None reported major distress (Table 1, Fig. 2).
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Urge incontinence, other incontinence and stress incontinence had the highest ‘mean distress score’ (1.86, 1.53 and 1.29, respectively), whereas straining and hesitancy had the lowest ‘mean distress score’ (0.74 and 0.79, respectively) (Table 1).
Association between symptoms severity and distress
The degree of severity for straining and urge incontinence showed the highest correlation to the reported degree of distress (r = 0.835 and r = 0.834, respectively), while daytime frequency and nocturia showed the lowest correlation between symptom severity and distress (Table 2).
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Age and smoking were confounding factors for association between severity and distress in daytime frequency and straining, respectively.
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Discussion |
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In the present study, we found that 80% of the men reported LUTS experienced distress at any level. The highest prevalence of reported distress was found in men with urge incontinence. Urge incontinence was not the most common LUTS but, when it actually occurred, it caused considerable distress in the majority of study participants. It is possible that urge incontinence increased the level of distress by the feeling of an upcoming socially affecting negative event, ‘a small disaster’. Men who had other forms of incontinence (stress incontinence and ‘other’ incontinence) reported overall distress in 86–89% and in 100% when the symptom score was
2. Our data are supported by Peters and co-workers,12 who reported that >80% of the men over 45 years of age had experienced a problem related to urinary incontinence. Furthermore, our findings are supported in a study of patients with urinary bladder cancer.13 A negative impact on QoL has also been reported among women with urinary incontinence.14
A ‘very weak’ or ‘dribbling’ urinary stream caused major distress in all men affected by this symptom. Among those with a symptom score of 1 for weak stream, almost half reported no distress from the symptom and no one experienced major distress. Changes in the urinary stream usually occur gradually and are thus probably not experienced as distressful until a certain level of symptom severity has been reached. Above this threshold, our data indicate that the distress level increases substantially. One possible explanation for this ‘sudden’ increase of distress may be an awareness of a potentially malignant disease15 underlying the gradual increase of voiding problems.
The frequency of major distress among men who reported a symptom score of 1 was very low in 11 of the 12 measured symptoms. The sole exception was urge incontinence. Characterization of the impact from individual symptoms on experienced distress (and QoL) consequently gives additional and important information for the further management of men with LUTS. The highest frequency of men reporting symptom scores as moderate or severe was found among those with post-micturition dribbling or urgency. In spite of this, experienced distress from post-micturition dribbling was surprisingly low. One potential explanation may be that the distinction between different degrees of severity of this specific symptom is not well set out in DAN-PSS. This was confirmed by the findings that association between symptom severity and degree of distress was differentiated.
The procedure used to select the present cohort was unusual in that the participants were invited to take part in the study if they had reported one or more out of three LUTS 12 months earlier.10 In spite of the fact that the study participants were recruited from the population-based study, the selection procedure limited possibilities to generalize our findings.
The questions in the first study, developed in collaboration with an urologist, were designed for screening for LUTS in the primary health care system. The proportion of men distressed by a symptom depends on many factors, including personality characteristics, social factors, the individual's history and the perceived future scenario regarding the symptom burden and sense of coherence.
The use of a questionnaire answered in the home environment probably results in fewer investigator errors than an interview.17,18 The response rate was 77% after two postal reminders. We cannot exclude the possibility that the 23% who did not respond biased the study results. The mean age of all men 41–81 years (58.2) living in Sweden and non-responders (56.1) was lower than that of the responders (59.6), which limits the generalizability of the study. Measuring errors are known to occur if a question is difficult for the patient to understand and answer. In the present study, no clinical investigations were undertaken to validate reported symptoms objectively. Malmsten and co-workers found that self-reported urinary incontinence could not be verified objectively in 4.6% of the participants.19 Furthermore, it has been shown that the symptom ‘terminal dribbling’ is hard to verify objectively.20 DAN-PSS was compared with other extensively used score systems and was recommended for assessing the severity of symptoms among patients with LUTS.21 Therapeutic considerations should be based on both an analysis of symptoms and the level of distress that is caused by the symptoms.4,22
The primary health care physician has an important role in evaluating the patient with LUTS before therapeutic decisions or a referral to a urologist are made. Using a self-administered questionnaire such as the DAN-PSS may facilitate and improve the characterization of LUTS.
In conclusion, eight of 10 men who reported LUTS experienced distress at some level. Urge incontinence caused the highest frequency of distress even when the symptom occurred seldom. Our results confirmed the need to assess specific symptom-induced distress levels as well as symptom severity before deciding therapeutic options for men with LUTS. We believe that such information is important to obtain already at the first visit in primary health care information for the future management of patients with LUTS. DAN-PSS is a potentially useful tool for this purpose.
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Declaration |
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Funding: This study was supported by a grant from Västmanland's County Research Foundation.
Ethical approval: Ethics Committee of Uppsala University.
Conflicts of interest: None.
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References |
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