Scandinavian Journal of Primary Health Care
ISSN: 0281-3432 (Print) 1502-7724 (Online) Journal homepage: http://www.tandfonline.com/loi/ipri20
Urinary Incontinence in Women and the Effects on their Lives Toine Lagro-Janssen, Anton Smits & Chris Van Weel To cite this article: Toine Lagro-Janssen, Anton Smits & Chris Van Weel (1992) Urinary Incontinence in Women and the Effects on their Lives, Scandinavian Journal of Primary Health Care, 10:3, 211-216, DOI: 10.3109/02813439209014063 To link to this article: http://dx.doi.org/10.3109/02813439209014063
© 1992 Informa UK Ltd All rights reserved: reproduction in whole or part not permitted Published online: 12 Jul 2009.
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Citing articles: 13 View citing articles
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Date: 31 March 2016, At: 20:48
Scand J Prim Health Care 1992; 10: 211-216
Urinary Incontinence in Women and the Effects on their Lives T O I N E LAGRO-JANSSEN, A N T O N SMITS and CHRIS VAN WEEL Nijmegen Universiry. Department of General Practice, Verlengde Groeneslraat 75, PO Box 9101, 6500 H B Nijmegen. The Netherlands
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Lagro-Janssen T, Smits MA, van Weel C. Urinary incontinence in women and the effects on their lives. Scand J Prim Health Care 1992; 10 211-6. The aim of this study was to assess and analyse the effects of urinary incontinence in women and to examine the relationship between these effects and the type and severity of incontinence. 110 women aged 20 to 65 who had reported urinary incontinence to their general practitioners underwent a comprehensive history and a complete urodynamic evaluation. The reported consequences of incontinence included low self-esteem, changing life-style in order to avoid potentially embarrassing situations, and all kinds of practical worries. Fear of the odour played the most important part and was mentioned as being the worst effect in 40% of the cases. Most of the women appeared to cope adequately with the unpleasant aspects of this condition. More effects were associated with urge incontinence than with stress incontinence, while there was a significant relationship between the objective severity of the incontinence and its psychosocial impact. The main conclusion is that although urinary incontinence is not a severe physical disability, a spectrum of psychological problems is associated with it. In particular, the fear of being smelt was of the utmost importance. Key words: female urinary incontinence, psychosocial impact, general practice.
T. Lagro-Janssen, MD, PhD, Nijmegen University, Department of General Practice, Verlengde Groenestraat 75, PO Box 9101, 6500 HB Nijmegen, The Netherlands.
Urinary incontinence may sometimes be regarded as a severe symptom associated with feelings of embarrassment and humiliation. The psychosocial impact of incontinence seems to be especially dramatic among patients who are referred to a specialist for medical treatment (1-3). In a more randomly selected population, however, the consequences of incontinence appeared to be less severe. Most of the women were not discouraged by their incontinence from carrying out their daily activities, while only few of them asked for medical advice (4-6). The reasons for the latter are still far from clear, but one reason seems to be that those who seek advice suffer from urinary incontinence in a more severe form and have more worries and restrictions as a result of this condition than those who d o not (5, 6). Studies of urinary incontinence have so far paid little attention to this issue in women who report urinary incontinence to their general practitioners. In order to administer proper treatment to those women, it is of great im16'
portance to gain deeper insight into the psychological effects of incontinence and into the restrictions in activities it imposes. These effects are, besides personality factors, most likely to be influenced by the seventy and type of incontinence. The aims of the present study were to assess the extent to which urinary incontinence in women affects their daily lives, and to examine the relationship between these effects on the one hand and type and severity of urinary incontinence o n the other. METHODS Between 1 January 1987 and 1 January 1990, 13 general practitioners in the eastern part of T h e Netherlands selected women, aged 20-65 years, presenting with urinary incontinence for the study. Incontinence was defined as the involuntary loss of urine twice or more often per month. They were excluded from the study if they had previously undergone an operation for incontinence, if they suffered from Scand J Prim Health Care 1992: 10
212
T. Lagro-Janssen er al.
Table I. Characteristics of the study population. n = 110.
Women with other diseases Women using medication Severity of incontinence mild
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moderate severe Duration of incontinence 5 years Type of incontinence genuine stress incontinence urge incontinence mixed incontinence no demonstrable incontinence on urodynamics n = total number of patients
underlying neurological causes for incontinence, from diabetes mellitus, o r from urinary tract infection, or if there was a temporary cause for their incontinence (e.g. pregnancy or bed rest). Microscopy and, if there was doubt, urine culture were performed on every patient to rule out the possibility of a urinary tract infection. Patients with urinary tract infection were included in the study later if incontinence persisted after therapy. All selected patients selected who agreed to take part in the study were examined by one G P researcher (A. L. M. Lagro-Janssen). She also took a comprehensive history, which consisted of four themes. Respondents were informed about the nature of the subsequent questions and about the importance of providing accurate information. First, a medical history was taken, including the frequency of incontinence, the volume of urine loss, and the use of protective pads or garments because of the incontinence. The severity of the incontinence was subdivided into three categories, according to the frequency of uring loss and the use of protective pads or garments: mild (either three to four times a month or a few times a week but requiring no protective pads); moderate (either a few times a week or daily but only requiring protective pads on occasion or not at all); or severe (daily and requiring protective pads most of the time) (7). Scand J Prim Health Care 1992; 10
Second, the women were asked to rate the extent to which urinary incontinence affected their functioning in three areas: job and household activities, recreation (such as walking, sports, shopping, and social outings), and psychological functioning (e.g. mental well-being, relationships with husbands or boyfriends and with families and friends). The subjects used a three-point scale to rate the effects: not at all, slightly, and a great deal. This self-assessment was almost similar to that in the study of Norton (1). She used a four-option response (not at all, quite a lot, slightly, and a great deal). Third, the women were questioned about the nature of the psychological consequences. The opening question was: ‘Has urine loss affected your personal life, and if so, in what way?’ The following issues, if not mentioned spontaneously, were explicitly raised by the researcher: the fear of smell; the consequences of urinary incontinence for the patients’ relationships with their families and friends; its effects on their social lives and their intimate relationships. All responses to the open questions were recorded and afterwards categorized by the GP researcher. This part of the study was mainly qualitative and descriptive. Finally, the patients were asked to indicate the worst effect of urinary incontinence on their lives. The psychosocial impact of urinary incontinence was constructed on the basis of a score of the effects on functioning in the three areas mentioned (appendix 1). All the patients underwent a complete urodynamic evaluation, including static and dynamic urethral pressure profiles, cystometries, and uroflowmetries. The test was performed in hospital by a specialized nurse. The type of incontinence was diagnosed on the basis of urodynamics. According to the standard criteria of the International Continence Society, three types of incontinence were distinguished: genuine stress incontinence, urge incontinence, and mixed incontinence. Chi square tests were used to test the relationship between the type and severity of the incontinence on the one hand and its psychosocial impact on the other. The study was approved by the medical ethics committee of the University of Nijmegen. The patients were informed about the study design and agreed on the terms of the study.
Urinary incontinence in women Table 11. Extent to which urinary incontinence affected daily functioning. n = 110. Joblhousehold Recreational Psychological activities activities well-being no (Yo) no ("1.) no (%) Not at all 106 (96) Slightly A great deal 1 (1)
33 (39)
62 (56)
17 115) 86 (78)
'
(6)
n = total number of patients
RESULTS
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A total of 146 women presenting to their general
practitioners with urinary incontinence were selected for the study. 36 of them refused to participate; the main reason for not taking part (23 women) was that they did not consider their urinary incontinence serious enough to warrant further investigation (response rate of 75%). There were no differences in socio-demographic data or the type of incontinence between participants and non-participants. Mild incontinence was indeed more frequent among the non-participants (56%) than among the participants (7%). The study population thus consisted of 110 women (mean age 43.5 years, SD 10.0; mean parity 2.2, SD 1.4). Their most important characteristics are given in Table I. Six patients had no demonstrable incontinence on urodynamics; these patients were nevertheless included in the further analysis, because they had presented with involuntary loss of urine. In 56% of the cases the incontinence was categorized as moderate and in 36% as severe. None of the women had a severe coexistent disability; the presence of concurrent diseases mainly concerned hypertension, obesity, and varicose veins.
The extent to which urinary incontinence affects daily functioning None of the women were prevented from working at home or at a job (Table 11). More than half of them felt somewhat restricted in their recreational activities (mostly in sports), and 5 % of them severely so. 7% of t h e women felt greatly affected in their psychological well-being as a result of their incontinence, while the majority mentioned some adverse effect in this area and 15% did not perceive any negative effect at all.
213
Nature of psychological consequences O n the basis of the subjects' answers, the nature of the effects were grouped into three broad main categories: self-perception, social interaction, and practical issues. Self-perception Feelings of shame, reflected in low self-esteem and embarrassment, were common among the respondents. Some women reported feeling uncomfortable because of their condition. Nearly 60% of the women answered affirmatively to the question whether the fear of odour was an important symptom. They were very afraid that other people might discover it. Some women felt insecure even with protective materials, and they mentioned loss of confidence in doing daily chores. Some women found it humiliating to be noticed with bags of pads. Needing a toilet at inconvenient moments made some anxious and nervous about what might happen. Queuing at toilets was a nightmare for some women with urgency and urge incontinence. And, finally, there was the fear that the incontinence might get worse in the future. Social interaction 60% of the women perceived in some way a negative influence on social and leisure activities; only a minority of them, 6 % , mentioned fewer social interactions with friends and family members. The fear that other people might detect the loss of urine manifested itself in a reluctance to visit places where lavatories were inaccessible, unknown, or hardly available. The lack of toilets was reported frequently. Women also gave up sports such as swimming, gymnastics, tennis, and dancing. The latter was the most common restriction in this field. Long walks and jumping, e.g. when playing with children, were avoided as well. It was mainly the fear that other people might notice their condition that made women alter their life-style to avoid these activities. Practical issues These included the need to think of taking protective materials, the possibility ol changing clothes, and a way of disposing of used pads. These problems usually played a role outdoors. Travelling, for instance. made things more difficult. Furthermore, there was Scand J Prim Health Care 1992; 10
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T. Lagro-Jamsen et al.
Table 111. Relationship between psychosocial impact and type and severity of incontinence. n = 104:.
smelt was mentioned less frequently in this group: 50% compared with 68% for other types of incontinence. The nature of the restrictions depended on Type Psychosocial impact the type of incontinence; avoiding physical exercise was associated with genuine stress incontinence, and not at all slightly a great no (YO) no (YO) deal the fear of not reaching toilets in time with urge no (YO) incontinence. There was no correlation between the seventy and genuine stress type of incontinence; the severity was equally diincontinence 14 (21) 48 (73) 4 (6) vided among the three types (genuine stress incontiurge incontinence 1 (6) 16 (89) 1 (6) nence, urge incontinence, and mixed incontinence). mixed incontinence 2 (10) 17 (85) 1 (5) There was a significant relationship between the Severity no(%) no(%) no (%) severity of urinary incontinence and its psychosocial impact: psychosocial consequences were mentioned mild incontinence 4 (57) by fewer than half the cases with mild incontinence, 2 (29) l(14) moderate incontinence 10 (17) 48 (81) 1 (2) compared with 82% and 95% by women with mod2 (5) severe incontinence 31 (82) 5 (13) erate and severe incontinence respectively (Table 111). n = total number of patients Chi’ test for diagnosis: p < 0.05 In particular, the fear of being smelt increased Chi’ test for severity: p < 0.01 with the severity of the incontinence: mild inconti‘the women with no demonstrable incontinence on nence 43%, moderate 53% and severe 67%. Neverurodynamics were excluded theless, 14% of the women with mild incontinence experienced many psychological problems. the problem of skin irritation as a result of the use of pads. Nearly all the women discussed one o r more practical problems with the GP researcher. DISCUSSION
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~~
~
Surprisingly, the incontinence affected sexual relationships only slightly. Four women with genuine stress incontinence had to take protective measures because of urine loss during sexual intercourse o r after a n orgasm. Six women, all suffering from urge incontinence, complained about pain during sexual intercourse or painful urgency afterwards. Six women had n o sexual relationship. When explicitly asked, none of the other women perceived sexual difficulties. Worst effect The question about the worst effect of incontinence on the women’s lives has yielded various types of response, most described above. But despite the variety, almost half the cases undoubtedly perceived the smell, the fear of being smelt, and the concomitant embarrassment and shame as the worst aspect of urinary incontinence. Type and severity Table I11 shows the relationship between the type of urinary incontinence and its psychosocial impact; women with genuine stress incontinence had the fewest problems. In particular, the fear of being Scund J Prim Health Care 1992; 10
These results contradict the view of urinary incontinence as a severe disability in itself (2,3). In general, most women seem to cope very well with the unpleasant consequences of urine loss. For the majority of the women in this study incontinence was rarely a reason for giving u p household or j o b activities. T h e patients material in this study was not representative for all incontinent women. First, the women were different from the majority of the women with urinary incontinence in that they presented themselves to a GP. Urinary incontinence is regarded as more serious and inconveniencing by women who consult a GP than by women who d o not (5, 6 ) . The former’s perception of this symptom might be expected to be worse. This supports our assumption that in general urinary incontinence does not lead to severe disabilities. Second, the study concerned a group of otherwise healthy women below the age of 65. In the case of coexistent disabilities, incontinence probably leads to a greater degree of restrictions. In older women the relationship between urinary incontinence and psychological distress may be, at least in part, a reflection of their general health status (9). Hunskaar and Vinsnes (10) showed that elderly women
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Urinary incontinence in women
215
In a society where perfumes are used against any (above 70) with symptoms of stress incontinence natural body odour, it is obvious that the unpleasant were only little affected. Other studies confirm these smell of urine is a social taboo. For many women it is findings for all older women, independent of type of the smell, together with feelings of shame and degraincontinence (9, 11). Similarly, our findings do not support the hypoth- dation, which is the worst and most difficult to cope with. esis that urinary incontinence causes severe psychoParticularly noteworthy in our study is the fact logical disorder (12, 13). It has been suggested that women d o not present their incontinence to medical that there are large differences in the way women professionals, due to fear of loss of self-esteem and cope with their incontinence. This finding is in line consequent denial of their psychological problems with those of other studies (1, 3, 14, 15). It illustrates how individual the various responses t o an illness (14, 15). In our study the participants were very may be; some women see urinary incontinence as an frank in talking about their problems. Most of them mentioned their problems spontaneously, or only inconvenience, others as a major problem. It depends on their personalities and circumstances. The needed slight encouragement to d o so. This study revealed an association between the effect of personality on perception of psychosocial type of urinary incontinence and its psychosocial consequences of urinary incontinence is an imporimpact; urge incontinence led to more inconve- tant issue for future research. Only a minority, 7% nience than genuine stress incontinence. Several of the women, were extremely inconvenienced by studies have shown that urge symptoms give more their incontinence. inconvenience than stress symptoms (2, 3, 9). The The main conclusion is that, although urinary inurgent need to void causes women to avoid situa- continence is not a severe physical disability, and tions in which they cannot reach a toilet immediately with women coping surprisingly well with their diffior in time. It may be that women with urge in- culties, a spectrum of life-style and psychological continence therefore feel that they have less control problems is associated with it. These results confirm over their bladder function than those with genuine the need for the GP to investigate carefully in each stress incontinence. Some authors think that psycho- patient to what extent her incontinence interferes logical factors are very important in the aetiology of with her daily activities and what it is that she wants urge incontinence and therefore that a vicious circle to improve by means of therapy. This means that of negative impulses may reinforce the symptoms (2, individual patients require individual assessment. 12-13). The majority of the women in our study had This is not a new recommendation, but it makes the reported genuine stress incontinence. The higher GP an outstanding person to help patients with this frequency of urge incontinence in patients who are condition, if the GPs are willing to improve their under specialist treatment probably contributes to management of urinary incontinence (16). the more severe psychological impact of incontiIn conclusion, we believe that urinary incontinence among them (3, 12, 15). nence in women is not so much a physical obstacle in The relationship between the severity and the psy- day-to-day life as an adverse factor in the long-term chosocial impact i s obvious; the more severe the quality of life. Proper treatment of urinary incontiincontinence, the smaller the number of patients nence must therefore include special attention to its who do not suffer at all. Nevertheless, it should be psychological aspects. The G P has the opportunity borne in mind that mild incontinence, too, may lead to provide such attention. to severe psychological problems. Although most women do not regard incontinence ACKNOWLEDGEMENTS as a problem that threatens their lives or restricts This study was supported by the Dutch Prevention Fund their activities, it affects their life-styles, and especially their psychological functioning. In other REFERENCES words, the area most affected by incontinence is the 1. Norton C . The effects of urinary incontinence in area of the mind. Shame and fear of discovery of the women. Int Rehab Med 1982; 4: 9-14. incontinence cause loss of confidence and self-es2. Macaulay AJ, Stern RS, Holmes DM, Stanton SL. teem. In this respect, smell is of the utmost imporMicturition and the mind: psychological factors in the tance. It is not the smelling per se which causes the aetiology and treatment of urinary symptoms in problems, but the fear that other people may notice. women. BMJ 1987; 294: 540-3. Scand J Prim Health Care 1992; 10
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3. Wyman JF, Harkins SW, Choi SC, Taylor JR, Fantl JA. Psychosocial impact of urinary incontinence in women. Obstet Gynecol 1987; 70: 378-81. 4. Jolleys JV. Reported prevalence of urinary incontinence in women in general practice. BMJ 1988; 296: 1300-2. 5. Holst K, Wilson PD. The prevalence of female urinary incontinence and reasons for not seeking treatment. NZ Med J 1988; 101: 756-8. 6. Lagro-Janssen ALM, Smits AJA, van Weel C. Women with urinary incontinence: self-perceived worries and general practitioners’ knowledge of problem. Br J Gen Pract 1990; 40: 331-4. 7. Lagro-Janssen ALM, Debruyne FMJ, van Weel C. Value of the patient’s case history in diagnosing urinary incontinence in general practice. Br J Urol 1991; 67: 569-72. 8. Massey A, Abrams P. Urodynamin of the female lower urinary tract. Urol Clin North Am 1985; 12: 2314. 9. Herzog AR, Fultz NH, Brock BM, Brown MB, Diokno AC. Urinary incontinence and psychological distress among older adults. Psycho1 Aging 1988; 3: 115-21. 10. Hunskaar S, Vinsnes A. The quality of life in women with urinary incontinence as measured by the Sickness Impact Profile. J Am Geriatr SOC1991; 39: 378-82. 11. Kok ALM, Voorhorst FJ, Halff-Butter CMC, Janssens J, Kenemans P. The prevalence of urinary incontinence in elderly women. (In Dutch.) Ned Tijdschr Geneesk 1991; 135: 98-101. 12. Freeman RM, McPherson FM, Baxby K. Psychological features of women with idiopathic detrusor instability. Urol Int 1985; 40: 257-9. 13. Frewen WK. The significance of the psychosomatic factor in urge incontinence. Br J Urol 1984; 56: 330.
Scand J Prim Health Care 1992; I0
14. Ory MG, Wyrnan JF, Yu L. Psychosocial factors in urinary incontinence. Clin Geriatr Med 1986; 2: 657-71. 15. Wyman JF, Harkins SW, Fantl JA. Psychosocial impact of urinary incontinence in the community-dwelling population. J Am Geriatr SOC1990; 38: 282-8. 16. Sandvik H, Hunskaar S, Eriksen BC. Management of urinary incontinence in women in general practice: actions taken at the first consultation. Scand J Prim Health Care 1990; 8: 3-8. Received June 1991 Accepted January 1992
Appendix I. Score of psychosocial impact. Extent to which urinary incontinence affects daily functioning Jobhousehold activities
0 Not at all Slightly 1 A great deal 2
Recreational activities
0 Not at all Slightly 1 A great deal 2
Psychological well-being
0 Not at all 1 Slightly A great deal 2
Sum of score
0 1-3 4-6
not at all slightly a great deal
ISSN: 0281-3432 (Print) 1502-7724 (Online) Journal homepage: http://www.tandfonline.com/loi/ipri20
Urinary Incontinence in Women and the Effects on their Lives Toine Lagro-Janssen, Anton Smits & Chris Van Weel To cite this article: Toine Lagro-Janssen, Anton Smits & Chris Van Weel (1992) Urinary Incontinence in Women and the Effects on their Lives, Scandinavian Journal of Primary Health Care, 10:3, 211-216, DOI: 10.3109/02813439209014063 To link to this article: http://dx.doi.org/10.3109/02813439209014063
© 1992 Informa UK Ltd All rights reserved: reproduction in whole or part not permitted Published online: 12 Jul 2009.
Submit your article to this journal
Article views: 487
View related articles
Citing articles: 13 View citing articles
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=ipri20 Download by: [176.61.147.146]
Date: 31 March 2016, At: 20:48
Scand J Prim Health Care 1992; 10: 211-216
Urinary Incontinence in Women and the Effects on their Lives T O I N E LAGRO-JANSSEN, A N T O N SMITS and CHRIS VAN WEEL Nijmegen Universiry. Department of General Practice, Verlengde Groeneslraat 75, PO Box 9101, 6500 H B Nijmegen. The Netherlands
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Lagro-Janssen T, Smits MA, van Weel C. Urinary incontinence in women and the effects on their lives. Scand J Prim Health Care 1992; 10 211-6. The aim of this study was to assess and analyse the effects of urinary incontinence in women and to examine the relationship between these effects and the type and severity of incontinence. 110 women aged 20 to 65 who had reported urinary incontinence to their general practitioners underwent a comprehensive history and a complete urodynamic evaluation. The reported consequences of incontinence included low self-esteem, changing life-style in order to avoid potentially embarrassing situations, and all kinds of practical worries. Fear of the odour played the most important part and was mentioned as being the worst effect in 40% of the cases. Most of the women appeared to cope adequately with the unpleasant aspects of this condition. More effects were associated with urge incontinence than with stress incontinence, while there was a significant relationship between the objective severity of the incontinence and its psychosocial impact. The main conclusion is that although urinary incontinence is not a severe physical disability, a spectrum of psychological problems is associated with it. In particular, the fear of being smelt was of the utmost importance. Key words: female urinary incontinence, psychosocial impact, general practice.
T. Lagro-Janssen, MD, PhD, Nijmegen University, Department of General Practice, Verlengde Groenestraat 75, PO Box 9101, 6500 HB Nijmegen, The Netherlands.
Urinary incontinence may sometimes be regarded as a severe symptom associated with feelings of embarrassment and humiliation. The psychosocial impact of incontinence seems to be especially dramatic among patients who are referred to a specialist for medical treatment (1-3). In a more randomly selected population, however, the consequences of incontinence appeared to be less severe. Most of the women were not discouraged by their incontinence from carrying out their daily activities, while only few of them asked for medical advice (4-6). The reasons for the latter are still far from clear, but one reason seems to be that those who seek advice suffer from urinary incontinence in a more severe form and have more worries and restrictions as a result of this condition than those who d o not (5, 6). Studies of urinary incontinence have so far paid little attention to this issue in women who report urinary incontinence to their general practitioners. In order to administer proper treatment to those women, it is of great im16'
portance to gain deeper insight into the psychological effects of incontinence and into the restrictions in activities it imposes. These effects are, besides personality factors, most likely to be influenced by the seventy and type of incontinence. The aims of the present study were to assess the extent to which urinary incontinence in women affects their daily lives, and to examine the relationship between these effects on the one hand and type and severity of urinary incontinence o n the other. METHODS Between 1 January 1987 and 1 January 1990, 13 general practitioners in the eastern part of T h e Netherlands selected women, aged 20-65 years, presenting with urinary incontinence for the study. Incontinence was defined as the involuntary loss of urine twice or more often per month. They were excluded from the study if they had previously undergone an operation for incontinence, if they suffered from Scand J Prim Health Care 1992: 10
212
T. Lagro-Janssen er al.
Table I. Characteristics of the study population. n = 110.
Women with other diseases Women using medication Severity of incontinence mild
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moderate severe Duration of incontinence 5 years Type of incontinence genuine stress incontinence urge incontinence mixed incontinence no demonstrable incontinence on urodynamics n = total number of patients
underlying neurological causes for incontinence, from diabetes mellitus, o r from urinary tract infection, or if there was a temporary cause for their incontinence (e.g. pregnancy or bed rest). Microscopy and, if there was doubt, urine culture were performed on every patient to rule out the possibility of a urinary tract infection. Patients with urinary tract infection were included in the study later if incontinence persisted after therapy. All selected patients selected who agreed to take part in the study were examined by one G P researcher (A. L. M. Lagro-Janssen). She also took a comprehensive history, which consisted of four themes. Respondents were informed about the nature of the subsequent questions and about the importance of providing accurate information. First, a medical history was taken, including the frequency of incontinence, the volume of urine loss, and the use of protective pads or garments because of the incontinence. The severity of the incontinence was subdivided into three categories, according to the frequency of uring loss and the use of protective pads or garments: mild (either three to four times a month or a few times a week but requiring no protective pads); moderate (either a few times a week or daily but only requiring protective pads on occasion or not at all); or severe (daily and requiring protective pads most of the time) (7). Scand J Prim Health Care 1992; 10
Second, the women were asked to rate the extent to which urinary incontinence affected their functioning in three areas: job and household activities, recreation (such as walking, sports, shopping, and social outings), and psychological functioning (e.g. mental well-being, relationships with husbands or boyfriends and with families and friends). The subjects used a three-point scale to rate the effects: not at all, slightly, and a great deal. This self-assessment was almost similar to that in the study of Norton (1). She used a four-option response (not at all, quite a lot, slightly, and a great deal). Third, the women were questioned about the nature of the psychological consequences. The opening question was: ‘Has urine loss affected your personal life, and if so, in what way?’ The following issues, if not mentioned spontaneously, were explicitly raised by the researcher: the fear of smell; the consequences of urinary incontinence for the patients’ relationships with their families and friends; its effects on their social lives and their intimate relationships. All responses to the open questions were recorded and afterwards categorized by the GP researcher. This part of the study was mainly qualitative and descriptive. Finally, the patients were asked to indicate the worst effect of urinary incontinence on their lives. The psychosocial impact of urinary incontinence was constructed on the basis of a score of the effects on functioning in the three areas mentioned (appendix 1). All the patients underwent a complete urodynamic evaluation, including static and dynamic urethral pressure profiles, cystometries, and uroflowmetries. The test was performed in hospital by a specialized nurse. The type of incontinence was diagnosed on the basis of urodynamics. According to the standard criteria of the International Continence Society, three types of incontinence were distinguished: genuine stress incontinence, urge incontinence, and mixed incontinence. Chi square tests were used to test the relationship between the type and severity of the incontinence on the one hand and its psychosocial impact on the other. The study was approved by the medical ethics committee of the University of Nijmegen. The patients were informed about the study design and agreed on the terms of the study.
Urinary incontinence in women Table 11. Extent to which urinary incontinence affected daily functioning. n = 110. Joblhousehold Recreational Psychological activities activities well-being no (Yo) no ("1.) no (%) Not at all 106 (96) Slightly A great deal 1 (1)
33 (39)
62 (56)
17 115) 86 (78)
'
(6)
n = total number of patients
RESULTS
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A total of 146 women presenting to their general
practitioners with urinary incontinence were selected for the study. 36 of them refused to participate; the main reason for not taking part (23 women) was that they did not consider their urinary incontinence serious enough to warrant further investigation (response rate of 75%). There were no differences in socio-demographic data or the type of incontinence between participants and non-participants. Mild incontinence was indeed more frequent among the non-participants (56%) than among the participants (7%). The study population thus consisted of 110 women (mean age 43.5 years, SD 10.0; mean parity 2.2, SD 1.4). Their most important characteristics are given in Table I. Six patients had no demonstrable incontinence on urodynamics; these patients were nevertheless included in the further analysis, because they had presented with involuntary loss of urine. In 56% of the cases the incontinence was categorized as moderate and in 36% as severe. None of the women had a severe coexistent disability; the presence of concurrent diseases mainly concerned hypertension, obesity, and varicose veins.
The extent to which urinary incontinence affects daily functioning None of the women were prevented from working at home or at a job (Table 11). More than half of them felt somewhat restricted in their recreational activities (mostly in sports), and 5 % of them severely so. 7% of t h e women felt greatly affected in their psychological well-being as a result of their incontinence, while the majority mentioned some adverse effect in this area and 15% did not perceive any negative effect at all.
213
Nature of psychological consequences O n the basis of the subjects' answers, the nature of the effects were grouped into three broad main categories: self-perception, social interaction, and practical issues. Self-perception Feelings of shame, reflected in low self-esteem and embarrassment, were common among the respondents. Some women reported feeling uncomfortable because of their condition. Nearly 60% of the women answered affirmatively to the question whether the fear of odour was an important symptom. They were very afraid that other people might discover it. Some women felt insecure even with protective materials, and they mentioned loss of confidence in doing daily chores. Some women found it humiliating to be noticed with bags of pads. Needing a toilet at inconvenient moments made some anxious and nervous about what might happen. Queuing at toilets was a nightmare for some women with urgency and urge incontinence. And, finally, there was the fear that the incontinence might get worse in the future. Social interaction 60% of the women perceived in some way a negative influence on social and leisure activities; only a minority of them, 6 % , mentioned fewer social interactions with friends and family members. The fear that other people might detect the loss of urine manifested itself in a reluctance to visit places where lavatories were inaccessible, unknown, or hardly available. The lack of toilets was reported frequently. Women also gave up sports such as swimming, gymnastics, tennis, and dancing. The latter was the most common restriction in this field. Long walks and jumping, e.g. when playing with children, were avoided as well. It was mainly the fear that other people might notice their condition that made women alter their life-style to avoid these activities. Practical issues These included the need to think of taking protective materials, the possibility ol changing clothes, and a way of disposing of used pads. These problems usually played a role outdoors. Travelling, for instance. made things more difficult. Furthermore, there was Scand J Prim Health Care 1992; 10
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Table 111. Relationship between psychosocial impact and type and severity of incontinence. n = 104:.
smelt was mentioned less frequently in this group: 50% compared with 68% for other types of incontinence. The nature of the restrictions depended on Type Psychosocial impact the type of incontinence; avoiding physical exercise was associated with genuine stress incontinence, and not at all slightly a great no (YO) no (YO) deal the fear of not reaching toilets in time with urge no (YO) incontinence. There was no correlation between the seventy and genuine stress type of incontinence; the severity was equally diincontinence 14 (21) 48 (73) 4 (6) vided among the three types (genuine stress incontiurge incontinence 1 (6) 16 (89) 1 (6) nence, urge incontinence, and mixed incontinence). mixed incontinence 2 (10) 17 (85) 1 (5) There was a significant relationship between the Severity no(%) no(%) no (%) severity of urinary incontinence and its psychosocial impact: psychosocial consequences were mentioned mild incontinence 4 (57) by fewer than half the cases with mild incontinence, 2 (29) l(14) moderate incontinence 10 (17) 48 (81) 1 (2) compared with 82% and 95% by women with mod2 (5) severe incontinence 31 (82) 5 (13) erate and severe incontinence respectively (Table 111). n = total number of patients Chi’ test for diagnosis: p < 0.05 In particular, the fear of being smelt increased Chi’ test for severity: p < 0.01 with the severity of the incontinence: mild inconti‘the women with no demonstrable incontinence on nence 43%, moderate 53% and severe 67%. Neverurodynamics were excluded theless, 14% of the women with mild incontinence experienced many psychological problems. the problem of skin irritation as a result of the use of pads. Nearly all the women discussed one o r more practical problems with the GP researcher. DISCUSSION
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Surprisingly, the incontinence affected sexual relationships only slightly. Four women with genuine stress incontinence had to take protective measures because of urine loss during sexual intercourse o r after a n orgasm. Six women, all suffering from urge incontinence, complained about pain during sexual intercourse or painful urgency afterwards. Six women had n o sexual relationship. When explicitly asked, none of the other women perceived sexual difficulties. Worst effect The question about the worst effect of incontinence on the women’s lives has yielded various types of response, most described above. But despite the variety, almost half the cases undoubtedly perceived the smell, the fear of being smelt, and the concomitant embarrassment and shame as the worst aspect of urinary incontinence. Type and severity Table I11 shows the relationship between the type of urinary incontinence and its psychosocial impact; women with genuine stress incontinence had the fewest problems. In particular, the fear of being Scund J Prim Health Care 1992; 10
These results contradict the view of urinary incontinence as a severe disability in itself (2,3). In general, most women seem to cope very well with the unpleasant consequences of urine loss. For the majority of the women in this study incontinence was rarely a reason for giving u p household or j o b activities. T h e patients material in this study was not representative for all incontinent women. First, the women were different from the majority of the women with urinary incontinence in that they presented themselves to a GP. Urinary incontinence is regarded as more serious and inconveniencing by women who consult a GP than by women who d o not (5, 6 ) . The former’s perception of this symptom might be expected to be worse. This supports our assumption that in general urinary incontinence does not lead to severe disabilities. Second, the study concerned a group of otherwise healthy women below the age of 65. In the case of coexistent disabilities, incontinence probably leads to a greater degree of restrictions. In older women the relationship between urinary incontinence and psychological distress may be, at least in part, a reflection of their general health status (9). Hunskaar and Vinsnes (10) showed that elderly women
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Urinary incontinence in women
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In a society where perfumes are used against any (above 70) with symptoms of stress incontinence natural body odour, it is obvious that the unpleasant were only little affected. Other studies confirm these smell of urine is a social taboo. For many women it is findings for all older women, independent of type of the smell, together with feelings of shame and degraincontinence (9, 11). Similarly, our findings do not support the hypoth- dation, which is the worst and most difficult to cope with. esis that urinary incontinence causes severe psychoParticularly noteworthy in our study is the fact logical disorder (12, 13). It has been suggested that women d o not present their incontinence to medical that there are large differences in the way women professionals, due to fear of loss of self-esteem and cope with their incontinence. This finding is in line consequent denial of their psychological problems with those of other studies (1, 3, 14, 15). It illustrates how individual the various responses t o an illness (14, 15). In our study the participants were very may be; some women see urinary incontinence as an frank in talking about their problems. Most of them mentioned their problems spontaneously, or only inconvenience, others as a major problem. It depends on their personalities and circumstances. The needed slight encouragement to d o so. This study revealed an association between the effect of personality on perception of psychosocial type of urinary incontinence and its psychosocial consequences of urinary incontinence is an imporimpact; urge incontinence led to more inconve- tant issue for future research. Only a minority, 7% nience than genuine stress incontinence. Several of the women, were extremely inconvenienced by studies have shown that urge symptoms give more their incontinence. inconvenience than stress symptoms (2, 3, 9). The The main conclusion is that, although urinary inurgent need to void causes women to avoid situa- continence is not a severe physical disability, and tions in which they cannot reach a toilet immediately with women coping surprisingly well with their diffior in time. It may be that women with urge in- culties, a spectrum of life-style and psychological continence therefore feel that they have less control problems is associated with it. These results confirm over their bladder function than those with genuine the need for the GP to investigate carefully in each stress incontinence. Some authors think that psycho- patient to what extent her incontinence interferes logical factors are very important in the aetiology of with her daily activities and what it is that she wants urge incontinence and therefore that a vicious circle to improve by means of therapy. This means that of negative impulses may reinforce the symptoms (2, individual patients require individual assessment. 12-13). The majority of the women in our study had This is not a new recommendation, but it makes the reported genuine stress incontinence. The higher GP an outstanding person to help patients with this frequency of urge incontinence in patients who are condition, if the GPs are willing to improve their under specialist treatment probably contributes to management of urinary incontinence (16). the more severe psychological impact of incontiIn conclusion, we believe that urinary incontinence among them (3, 12, 15). nence in women is not so much a physical obstacle in The relationship between the severity and the psy- day-to-day life as an adverse factor in the long-term chosocial impact i s obvious; the more severe the quality of life. Proper treatment of urinary incontiincontinence, the smaller the number of patients nence must therefore include special attention to its who do not suffer at all. Nevertheless, it should be psychological aspects. The G P has the opportunity borne in mind that mild incontinence, too, may lead to provide such attention. to severe psychological problems. Although most women do not regard incontinence ACKNOWLEDGEMENTS as a problem that threatens their lives or restricts This study was supported by the Dutch Prevention Fund their activities, it affects their life-styles, and especially their psychological functioning. In other REFERENCES words, the area most affected by incontinence is the 1. Norton C . The effects of urinary incontinence in area of the mind. Shame and fear of discovery of the women. Int Rehab Med 1982; 4: 9-14. incontinence cause loss of confidence and self-es2. Macaulay AJ, Stern RS, Holmes DM, Stanton SL. teem. In this respect, smell is of the utmost imporMicturition and the mind: psychological factors in the tance. It is not the smelling per se which causes the aetiology and treatment of urinary symptoms in problems, but the fear that other people may notice. women. BMJ 1987; 294: 540-3. Scand J Prim Health Care 1992; 10
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3. Wyman JF, Harkins SW, Choi SC, Taylor JR, Fantl JA. Psychosocial impact of urinary incontinence in women. Obstet Gynecol 1987; 70: 378-81. 4. Jolleys JV. Reported prevalence of urinary incontinence in women in general practice. BMJ 1988; 296: 1300-2. 5. Holst K, Wilson PD. The prevalence of female urinary incontinence and reasons for not seeking treatment. NZ Med J 1988; 101: 756-8. 6. Lagro-Janssen ALM, Smits AJA, van Weel C. Women with urinary incontinence: self-perceived worries and general practitioners’ knowledge of problem. Br J Gen Pract 1990; 40: 331-4. 7. Lagro-Janssen ALM, Debruyne FMJ, van Weel C. Value of the patient’s case history in diagnosing urinary incontinence in general practice. Br J Urol 1991; 67: 569-72. 8. Massey A, Abrams P. Urodynamin of the female lower urinary tract. Urol Clin North Am 1985; 12: 2314. 9. Herzog AR, Fultz NH, Brock BM, Brown MB, Diokno AC. Urinary incontinence and psychological distress among older adults. Psycho1 Aging 1988; 3: 115-21. 10. Hunskaar S, Vinsnes A. The quality of life in women with urinary incontinence as measured by the Sickness Impact Profile. J Am Geriatr SOC1991; 39: 378-82. 11. Kok ALM, Voorhorst FJ, Halff-Butter CMC, Janssens J, Kenemans P. The prevalence of urinary incontinence in elderly women. (In Dutch.) Ned Tijdschr Geneesk 1991; 135: 98-101. 12. Freeman RM, McPherson FM, Baxby K. Psychological features of women with idiopathic detrusor instability. Urol Int 1985; 40: 257-9. 13. Frewen WK. The significance of the psychosomatic factor in urge incontinence. Br J Urol 1984; 56: 330.
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14. Ory MG, Wyrnan JF, Yu L. Psychosocial factors in urinary incontinence. Clin Geriatr Med 1986; 2: 657-71. 15. Wyman JF, Harkins SW, Fantl JA. Psychosocial impact of urinary incontinence in the community-dwelling population. J Am Geriatr SOC1990; 38: 282-8. 16. Sandvik H, Hunskaar S, Eriksen BC. Management of urinary incontinence in women in general practice: actions taken at the first consultation. Scand J Prim Health Care 1990; 8: 3-8. Received June 1991 Accepted January 1992
Appendix I. Score of psychosocial impact. Extent to which urinary incontinence affects daily functioning Jobhousehold activities
0 Not at all Slightly 1 A great deal 2
Recreational activities
0 Not at all Slightly 1 A great deal 2
Psychological well-being
0 Not at all 1 Slightly A great deal 2
Sum of score
0 1-3 4-6
not at all slightly a great deal
