The Burden of Stress Urinary Incontinence

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1 European Urology Supplements European Urology Supplements 4 (2005) 5 10 The Burden of Stress Urinary Incontinence Gunnar Lose* Department of Obstetrics and Gynaecology, Copenhagen University, Glostrup County Hospital, 2600 Glostrup, Denmark Abstract Recent large-scale studies have revealed that approximately one third of the adult, community-dwelling women have some form of urinary incontinence (UI). Stress urinary symptoms are most prevalent, being apparent in 70% 88% of incontinent women, either as pure stress urinary incontinence (SUI) or mixed urinary incontinence (MUI). SUI continues to remain a taboo, though, with only a minority of incontinent women consulting a doctor about their problem. Reasons for these low consultation rates include shame and embarrassment, lack of information about available treatment options, fear for surgery and the misconception that becoming incontinent is an inevitable consequence of age and/or giving birth. Yet, most SUI patients indicate that the condition has a negative impact on their well-being. However, even among those looking for help, treatment rates remain low. Hence, most SUI patients suffer in silence and try to cope with it themselves by using pads or panty liners, restricting fluid intake, avoiding social activities and limiting physical exercise. Recent developments of treatment options including a new pharmacological agent to alleviate SUI symptoms have good potential for treating these women, provided that awareness is raised in patients and physicians on the high prevalence, bothersomeness and treatment options of SUI. # 2004 Elsevier B.V. All rights reserved. Keywords: Stress urinary incontinence; Quality of life; Bothersomeness; Consultation rates; Treatment-seeking behaviour; Coping strategies; I-QOL 1. Introduction Urinary incontinence (UI), defined as the complaint of any involuntary leakage of urine [1] is highly prevalent in the adult population, and is two to four times more common in women than in men [2]. The prevalence of UI is even higher in institutionalised than in community-dwelling women [2]. At the same time UI is underreported with only few patients looking for help, suggesting a need for raising awareness on UI in patients and health care providers. UI is obviously not life-threatening, but its impact on the patient s quality of life (QoL) is often devastating and leads to social isolation for many patients. In order to provide patients with optimal care reliable data on prevalence, consultation rates and treatment are needed. However, despite the large amount of epidemiological surveys, prevalence data are not consistent because of the lack of standardisation in the definitions, target groups and * Tel: ; Fax: address: gulo@glostruphosp.kbhamt.dk. study designs [3]. Table 1 illustrates the wide variety in definitions for UI, target populations and hence prevalence estimates for UI. The recently published results of two large-scale epidemiological surveys in Europe and the US, using validated questionnaires, aim to address the issue of the need for a more systematic approach for the epidemiology of UI [4,5]. 2. Recent data on the prevalence of SUI in Europe and the US Hunskaar et al. assessed the prevalence of UI throughout four European countries (France, UK, Germany and Spain) based on a sample of 17,080 community-dwelling women and found that around 35% of the adult, community-dwelling women suffered UI [4]. Prevalence estimates were similar in France, the UK and Germany (41% 44%), but significantly lower in Spain (23%). The reason for this is unclear, as it is unlikely that a difference in risk factors /$ see front matter # 2004 Elsevier B.V. All rights reserved. doi: /j.eursup

2 6 G. Lose / European Urology Supplements 4 (2005) 5 10 Table 1 Overview of some recent surveys on the prevalence of UI in women Reference Study group N Definition of UI Prevalence (%) Differentiation in UI type [4] Women aged 18 y 17,080 Any leakage previous 30 days 35 yes [5] Women aged 18 y 24,581 Any leakage previous 30 days 37 yes [6] Women aged y 541 Leakage at least once a month 30.7 yes [7] General sample of female population (20 y) 27,936 Any leakage of urine 25 yes [8] Women aged 18 y 1,000 Leakage during past 12 months 45 yes [11] Women aged y 2,860 Any leakage of urine 16.1 yes [12] General sample of female population (20 y) 2,176 Leakage at least once a week and a 14 yes social/hygienic problem [14] Women aged y 491 Any leakage of urine 27.7 yes [18] Perimenopausal women (42 52 y) 3,258 Leakage during past 12 months 56.9 no [20] General sample of population 1,262 Leakage during past 4 weeks 26.3 yes [35] Women aged 48 y 1,333 Leakage during past 12 months 55 yes [36] Women aged y 3,076 Any leakage of urine at this moment 26 no [37] Pregnant women at 16 weeks (15 y) 7,795 Leakage during past 12 months 8.9 yes [38] Women aged 40 y 5,544 Leakage more than once a month 20.2 yes [39] Women aged 40 y 2,767 Leakage during past 12 months 11.4 yes [40] Women consulting GP aged y 418 Any leakage of urine 36 no [41] Women 12 months postpartum (14 42 y) 385 Any leakage of urine 13.3 no y: years. for UI exists between the various European countries. The authors suggested that this discrepancy may be due to cultural factors, i.e. Spanish women may be less inclined to report UI due to embarrassment or the belief that UI is inevitable at higher age [4]. Alternatively, they could not rule out unseen and unintended differences in methodology, like subtle differences in translation, as a possibility. Kinchen et al. provided a prevalence estimate for UI of 37% among 24,581 community-dwelling women in the US, which was only slightly lower than the data from France, Germany and the UK [5]. Stress urinary symptoms emerged as the most common incontinence symptoms in either survey, with 37% 42% of the women having pure stress urinary incontinence (SUI) while 33% 46% of the women had mixed urinary incontinence (MUI) (Fig. 1). [4,5]. This confirms earlier surveys reporting that stress symptoms are the most common cause of urine losses in incontinent women [6 8]. The metaanalysis of Hampel et al. including 48 surveys revealed fairly similar percentages, with SUI occurring in 49% of incontinent women, while 29% and 22% were affected by MUI and UUI respectively [9]. However, urodynamic studies reveal that SUI is underreported in the self-reported questionnaires that are widely used in epidemiological research, while the prevalence of MUI is overestimated: in their study Sandvik et al. found that using a urodynamic evaluation, the prevalence of pure SUI among incontinent women was increased from 51% to 77% while the prevalence of pure MUI was reduced from 39% to 11% [10]. SUI occurs mainly in younger and middle-aged women and peaks around the fifth decade, while it becomes less common in older women [4,5]. The reason for this is unknown [11]. A clear decline in the prevalence of SUI from the sixth decade in life is apparent. In contrast, MUI becomes more common in older women. These age-specific differences in the occurrence of the various UI types are consistent across the US and the four European countries, and they are in line with data from previous surveys [7,11,12]. 3. Burden of SUI Fig. 1. Distribution of the various types of UI in Europe and the US [4,5]. Although the leaking of urine is not life-threatening, being incontinent may impose a significant burden on

3 those affected. Patients may suffer emotionally, socially, and financially. G. Lose / European Urology Supplements 4 (2005) Psycho-social burden: reduced quality of life, social isolation, depression The negative impact of incontinence on the psychosocial well-being of the patients is well-documented; many incontinent women feel highly ashamed about it and refrain from social activities [13,14]. Women report that their UI prevents them from meeting people, doing their shopping and participating in sports activities [12,15]. Incontinence patients tend to feel less attractive and avoid sexual intercourse [13]. Nygaard et al. reported that severely incontinent women were 80% more likely to suffer a depression while women with mild to moderate incontinence had a 40% greater risk for depression than continent women [16]. UI is also associated with feelings of sadness and loneliness [17]. Increased symptom severity and increased frequency of incontinence episodes are associated with a higher degree of bothersomeness [11,17,18]. Women who have weekly or more frequent incontinence episodes tend to experience this as considerably bothersome [11]. Incontinence episodes less frequent than once a month are not perceived as very troublesome [14]. However, the development of a disease-specific measurement tool, the Incontinence Quality of Life instrument (I-QOL), has allowed for a more quantitative assessment of the impact of incontinence on the patient s QoL [19]. The I-QOL consists of 22 items, each with a five-point response scale, and comprises questions about how the patient s life quality is affected by incontinence [19]. A scale from 0 to 100 is employed with 100 the best possible score and 0 the worst score. The I-QOL score consists of a total score along with subscale scores for three factors: (1) avoidance and limiting behaviour, (2) psycho-social impact and (3) social embarrassment of UI. As clinical measures do not take into account the patient s perspective on her UI, the I-QOL is complimentary for a more accurate assessment of the impact of UI on the patient s life [19]. While the psycho-social impact of UUI has been largely examined, few studies have been dealing with the impact of SUI on the patient s well-being [20,21]. Fultz et al. employed the I-QOL instrument for assessing the impact of SUI on the patient s QoL [21]. More than three out of four women reported that they were bothered by their SUI, and one out of three claimed to feel moderately to extremely bothered. Fifteen percent of the women with at least weekly SUI symptoms felt moderately to extremely bothered and experienced a Fig. 2. Self-reported impact of SUI among women who are moderately to extremely bothered. Respondents rated how much of a negative impact urinary leakage had on each of the items, using a scale of 1 to 5 [21]. negative impact on their QoL, expressed as an I-QOL score below 90 [21]. Social embarrassment such as fear for symptom worsening, urine odour and humiliating accidents appeared to be the major determinant of bothersomeness [21]. Patients bothered by their SUI were also worried about coughing and sneezing, and that they would not get to the toilet on time. More than one third of these bothered women reported that they were prevented from doing what they wanted and that their SUI was always on their mind [21]. Another study found that as many as 38% of middle-aged and 28% of older incontinent women claimed to avoid sporting activities because of their SUI [15]. Many women also report a negative effect on their self-perception, confidence and personality (Fig. 2). Bothersomeness was also correlated with age, older women being less burdened by SUI than younger women [21]. Probably, younger women with an active professional and social life are more bothered in daily life by their SUI because restricting of activities is not likely to be a coping strategy for this age group [21] Financial burden: costs for patients and health care system SUI has not only a negative impact on the patient s well-being, it is also associated with a considerable financial cost. While in some countries incontinence pads may be (partly) reimbursed by the health care system, this is by no means universal [22]. For example, the median cost of protective pads in the UK is estimated at 3.84 a month per woman, but 15% of the women spend over 20 a month on them [22]. Birnbaum et al. estimated the average direct medical cost of SUI per patient to be $US 5,642 for 1998 in the US, provided no continence surgery was performed [23]. The cost for SUI patients receiving surgery increased to $US 9,985. In addition, the indirect workplace expen-

4 8 G. Lose / European Urology Supplements 4 (2005) 5 10 diture amounted to $US 4,208 [23]. Wilson et al. estimated that the total annual cost of UI is comparable to other chronic diseases in women [24]. 4. Consultation rates on UI A common finding throughout all -recent as well as older- epidemiological surveys on UI is the invariably low consultation rate for the condition. Only a minority of incontinent women report that they ever talked to a physician about their incontinence problem [25]. The recent US and European surveys of Hunskaar et al. and Kinchen et al. are in line with these findings, revealing that only 24 45% of incontinent women had consulted a physician for it [4,5]. In the European study, consultation rates were lowest in Spain (24%) and in the UK (25%), against 33% in France and 40% in Germany [4]. Help-seeking behaviour is often triggered by symptom worsening, which may create a greater negative impact on QoL as well as fear for the future [26,27]. This was confirmed by Kinchen et al. who reported that the most commonly cited reason for treatment seeking was the concern that the condition would get worse [5]. Other commonly cited reasons included a need to wear pads or panty liners, fear for an embarrassing accident, the concern that leakage is not normal or a symptom of a serious underlying disease, interference with daily activities and fear for smelling of urine [5,26,27]. Treatment seekers are significantly more severely afflicted by their incontinence than non-seekers (Fig. 3). Although severely incontinent women are more likely to consult a physician than those with mild symptoms, only half of the women with severe symptoms seek treatment [6,28,29]. This is in line with the data from Fultz et al. that, even among women who reported to be moderately to extremely bothered by their SUI, only 47% had consulted a physician on it [21]. Attitudes towards health care use and incontinence play also an important role as to whether treatment is sought [5]. Non-seekers often do not consider UI as a medical problem, but rather as a nuisance to be dealt with on their own [27]. Especially older people, brought up with the notion that a physician is only to be consulted in extreme circumstances, are less inclined to bother their doctor with it [26]. However, an almost equally important reason for not seeking help is that the patient does not know where to seek help, or is unaware of treatment options [13,27]. Fear that surgery is the only treatment available is another reason that women may delay treatment seeking [13,26]. In addition, patients are often too embarrassed to discuss the topic with their physician [5,13,27]. Those who do talk about it, have to raise the issue themselves in most of the cases [5]. Another major factor is the belief that incontinence symptoms are the normal consequence of age and giving birth [13,26,27]. Although pregnancy and delivery are indeed established risk factors for SUI [30,31], becoming incontinent is by no means inevitable. Moreover, age is rather a risk factor for MUI and UUI rather than SUI, considering that the prevalence of SUI decreases after 60 years of age [4,7]. In contrast to non-seekers, treatment seekers are less embarrassed to discuss UI with a health care provider and are more likely to seek out information on causes and treatment options for incontinence [5]. Hence, in order to raise consultation rates, women should be encouraged to overcome their initial embarrassment and discuss incontinence with their doctor. They should be made aware of the fact that becoming incontinent is not a normal situation and that it is by no means shameful. 5. Treatment rates and coping strategies in incontinent women Fig. 3. Burden of UI in treatment seekers vs. non-seekers. Self-reported bothersomeness rated on a scale of not or slightly bothered to moderately and extremely bothered; Self-reported symptom severity rated on a scale from mild to moderate and severe. * Treatment seekers vs. non-seekers: p < 0.01 [5]. Incontinence is not only underreported, it is also treated insufficiently, even among treatment seekers. The treatment of incontinence ranks high among unmet needs as reported by middle aged and older women [32]. For example, only 24% of the women in the US study who consulted a physician on their UI had received a recommendation for treatment, while 14% were referred to another physician and another 18% were recommended monitoring before beginning treatment [28]. As many as 23% were told by their

5 G. Lose / European Urology Supplements 4 (2005) doctor that incontinence symptoms were normal for their age and 7% never even got any explanation, evaluation or treatment of UI [28]. Only 8% of incontinent women had undergone surgery, while 11% had ever taken prescription medication [28]. The data of Hunskaar et al. confirms these low treatment rates of UI [4]. In addition, considerable differences in treatment rates were observed between the European countries. For example, the highest surgery rate (8%) was found in the UK while rates in Spain and France were much lower (3%). In Germany, 5% of incontinent women had undergone surgery [4]. In contrast, 7% of the incontinent women in France used medication for their condition, against 5% in Germany, 2% in Spain and 3% in the UK. These facts underline once more the need to raise awareness about UI, not only in patients but also in health care providers. Hence, most women rely on self-care for coping with their incontinence problems. Self-coping strategies include defensive and concealing behaviour [28]. Defensive strategies such as avoiding social and physical activities, paying frequent visits to the toilet and limiting fluid intake are widely employed [28]. Interestingly, the percentage of women who have ever tried any of these strategies is considerably higher than those currently trying. Not unexpectedly, bothered women are more likely to use coping strategies than women who are not bothered (Fig. 4). About half of the incontinent women reported to use incontinence pads or panty liners, as well as other absorbent materials [4,28]. The European data revealed that the use of incontinence pads was lowest in France (40% of incontinent women) and highest in Germany (59%) [4]. In Spain and the UK, respectively 52% and 46% of incontinent women resorted to the use of incontinence pads. Wearing dark colours or long clothing to hide stains was another, although less common, concealing strategy [28]. The fact that 38% of the incontinent women have ever tried pelvic floor muscle training (PFMT) against only 20% currently doing it [28] indicates that treatment compliance with PFMT is low in the long term. PFMT is performed almost equally common by bothered (20%) as by not bothered women (18%). In contrast, bothered women were significantly more likely to take prescription medication [28]. However, no universally approved medication for the treatment of SUI is commercially available so far. Currently, Fig. 4. Self-coping strategies of women with UI: bothered versus notbothered women [28]. several classes of drugs are being prescribed off-label but most of these drugs have considerable side-effects and their clinical effects on SUI are controversial at best [33]. Considering that a significant improvement in psychological distress is observed after adequate treatment for UI [34], the development of new treatment options including efficacious and safe pharmacological agents for the treatment of SUI may contribute to an improved life quality for the patients. 6. Conclusions SUI is highly prevalent in women, especially among younger and middle-age groups. Most incontinent women perceive their SUI as bothersome. SUI imposes a considerable emotional, social, and financial burden on the patient. However, despite its bothersomeness SUI remains underreported and undertreated. Indeed, less than half of the incontinent women consult a physician for it. Treatment-seeking behaviour is associated with symptom severity, but this is not the only factor. Even among very severely incontinent women, only half of them talk to a doctor about UI. The finding that lack of embarrassment is an important factor for treatment-seeking behaviour points to the importance of educating women and raising awareness among health care providers about SUI. Recent developments of treatment options including a new pharmacological agent have a good potential for bridging the current gap in the treatment of SUI. References [1] Abrams P, Cardozo L, Fall M, Griffiths D, Rosier P, Ulmsten U, et al. The standardisation of terminology in lower urinary tract function: report from the standardisation sub-committee of the International Continence Society. Neurourol Urodyn 2002;21:

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