Help-seeking and associated factors in female urinary incontinence The Norwegian EPINCONT Study

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1 ORIGINAL PAPER Help-seeking and associated factors in female urinary incontinence The Norwegian EPINCONT Study Yngvild S. Hannestad, Guri Rortveit and Steinar Hunskaar Section for General Practice, Department of Public Health and Primary Health Care, University of Bergen, Bergen Norway. Scand J Prim Health Care Downloaded from informahealthcare.com by on 05/20/4 Scand J Prim Health Care 2002;20: ISSN mixed types compared with stress incontinence, and having visited any doctor during the previous 2 months. Fifty percent of the women with signi cant incontinence (moderate/ severe incontinence perceived as troublesome) had seen a doctor because of their incontinence. Conclusions Only a fourth of the women with any incontinence, and half of the women with signi cant incontinence had consulted a doctor. Older age and high impact of the symptoms were the factors most strongly associated with help-seeking. Objectives To assess the proportion of women who visit their doctor because of urinary incontinence and investigate factors associ- ated with help-seeking. Design Postal invitation, questionnaire covering many health topics including urinary incontinence, received at a screening station. Setting The Norwegian EPINCONT Study is part of a large cross-sectional population-base d survey performed in the county of Nord-Trøndelag during the period Subjects 6625 women (out of participating women), 20 years or older, categorised as incontinent according to their answers to the questionnaire. Results 26% of the incontinent women had seen a doctor for their incontinence. Increasing age, impact, severity and duration were all signi cantly associated with consultation rate, as were urge and Key words: urinary incontinence, epidemiology, female, patient acceptance of health care. Yngvild S. Hannestad, Section for General Practice, University of Bergen, Ulriksdal 8c, NO-5009 Bergen, Norway. yngvild.hannestad@isf.uib.no Urinary incontinence is a common condition among women. As many as 25% of adult women may have urinary incontinence of any degree and type, and the prevalence increases with increasing age (,2). Between 5% and 0% may have signi cant incontinence, de ned as moderate or severe incontinence perceived as troublesome (,2). Urinary incontinence can have serious consequences on the psychological well-being, perceived health and social life of the af icted person (3 5). The condition can be effectively treated in general practice, with signi cant improvement of clinical and quality of life parameters (6 8). Previous research, however, has indicated that many women do not consult their doctor on this matter. Many do not regard their symptoms as abnormal or serious (9 ) and hope that it improves by itself (2). Older women tend to regard incontinence as a normal part of aging, and health-care providers may reinforce this belief (3). Embarrassment prevents some women from telling their doctor (2); others think there is no help (9,0), or fear that surgery is the only treatment option (2). For clinicians it is therefore relevant to know the fraction of patients with urinary incontinence, how many actively seek treatment, and what factors characterise them as a group. Thus, a more active approach for case- nding may be taken, to the bene t of many women. Most previous studies addressing consultation behaviour among incontinent women have reported the crude consultation rate and described the relationship between single factors and consultation without taking into consideration potential confounding. The aim of this population-based study was to assess the proportion of women who had visited their doctor because of urinary leakage and to nd factors independently associated with help-seeking. MATERIAL AND METHODS The Norwegian EPINCONT Study (Epidemiology of Incontinence in the County of Nord-Trøndelag) is a substudy of the Nord-Trøndelag Health Survey 2 (HUNT 2), a large survey performed in one county in Norway during the years HUNT 2 covered many topics, including urinary incontinence. Everyone aged 20 years or more (n ¾ 94 97; women) residing in the county were invited to participate; community-dwelling women participated in HUNT 2 and met at the screening station where they received a comprehensive questionnaire. This was to be lled in at home and returned by mail.

2 The Norwegian EPINCONT Study 03 Scand J Prim Health Care Downloaded from informahealthcare.com by on 05/20/4 The questions about urinary incontinence were answered by of the women who received the questionnaire, giving an overall response rate for the EPINCONT study of 80%. The response rate declined with age. Of the women participating in EPINCONT, 24.6% (6876) had urinary incontinence, of whom 6625 had answered the question about help-seeking. These women comprise the study population of the present study. Although a more complete description of the survey has been published in a previous paper (2), some relevant results and study data are referred to here for background reasons. The questionnaire The entry question in the incontinence section of the questionnaire was whether or not the participant experienced involuntary loss of urine. If the answer was in the af rmative, more speci c questions related to leakage were asked. These included frequency of leakage, amount of leakage, circumstance of leakage and whether leakage was accompanied by a sudden and strong urge to void. We also asked about the duration of the symptoms and to what extent she considered her leakage a problem. The questionnaire included questions about utilisation of health services in general in the past 2 months. In addition, we speci cally asked if she had ever seen a doctor for her urinary incontinence. De nitions Urinary incontinence was de ned as any leakage regardless of amount or frequency. A severity index was calculated based on frequency and amount of leakage (4,5), and the incontinence was then categorised into slight, moderate and severe (43%, 3% and 26% of the incontinent women, respectively). The impact of incontinence, e.g. the extent to which she considered her leakage a problem, was dichotomised for some purposes: minor problem (no problem:a minor nuisance; 66% of the incontinent women) on the one hand and troublesome (some bother:much bother:a major problem; 34%) on the other. The expression signi cant incontinence was used when the woman had moderate or severe incontinence as de ned by the severity index, and at the same time stated that the symptoms were troublesome. Thirty percent of the incontinent women had signi cant incontinence (7% of all women). Signi - cant incontinence as de ned here is not related to the statistical term signi cant. Based on descriptions of typical situations of leakage, the incontinence was classi ed into stress, urge, mixed and other urinary incontinence (50%, %, 36% and 3%, respectively). The severity and impact of urinary leakage differed between the incontinence types. Mixed incontinence had the highest scores for both severity and impact stress incontinence the lowest. As the question of duration was included in only approximately 75% of the questionnaires, we categorised missing answers on this variable as not given and included them in the regression analyses. In this paper, the outcome measure consultation rate means the percentage of incontinent women who have visited a doctor because of their symptoms, thus indicating a proportion. The subjects were grouped into 0-year age cohorts for all analyses. Where appropriate, three wider age groups (20 44, 45 59, 60 ) were used. Statistics Chi-squared tests for trend were performed to evaluate the relationship between consultation rate and the ordered variables. The differences in consultation rate between the unordered categories of incontinence type were tested by performing chi-quared tests for each possible pair. The p-values were multiplied by 3 to allow for multiple comparisons. Logistic regression analyses were used to adjust for confounding and to establish the factors that were independently associated with treatment-seeking. Statistical analyses were performed using the program SPSS 9.0. Statistical signi cance was accepted at a 0.05 level. Ethics Ethical approval for HUNT was obtained from both the Regional and the National ethics review boards. The subjects gave extensive written consent to use of the data. HUNT was also approved by the Norwegian Data Inspectorate. RESULTS Out of 6625 incontinent women, 745 (26%) had visited a doctor because of their loss of urine. Crude analyses of potentially associated factors (Table I) showed that the consultation rate increased with increasing age, frequency and amount of leakage, severity, impact and duration of symptoms. Stress type incontinence led to fewer consultations than the other types. Women with lower education had a higher consultation rate than those with education at university level. Women who during the previous 2 months had seen a general practitioner, and:or a doctor at a hospital and:or some other doctor, were more likely also to have consulted a doctor about their incontinence.

3 04 Y.S. Hannestad et al. Strati ed analyses were performed to establish the factors associated with consultation also when controlling for age. All variables except education remained signi cantly (p B0.05) related to the outcome and were included in a multiple logistic regression model comparing women who had seen a doctor for their leakage with those who had not. The logistic regression analyses (Table II) showed that increasing age, severity, impact and duration were all independently associated with help-seeking, as was urge and mixed types compared with stress incontinence and having visited any doctor during the previous 2 months. The factors most strongly associated with help-seeking were impact and age. Table I. Factors potentially associated with consulting a doctor for urinary incontinence. Data are presented as a percentage for each category. pb0.0 (chi-squared tests). No. of women with incontinence n Have seen a doctor for incontinence % Sign. Scand J Prim Health Care Downloaded from informahealthcare.com by on 05/20/4 Age (n¾6625) Polytechnic or university level of education (n¾6298) No Yes Seen any doctor in last 2 months (n¾6494) No Yes Frequency of leakage (n¾682) Less than once a month Once or more per month Once or more per week Every day and:or night 20 6 Typical amount of leakage per incontinence episode (n¾635) Drops or little More Severity of incontinence (n¾6023) Slight 2586 Moderate Severe Impact of incontinence (n¾6590) No problem 36 8 A small nuisance Some bother Much bothered A great problem Signi cant incontinence (n¾6006) No Yes Duration of incontinence (n ¾487) 0 5 years years \0 years Type of incontinence (n¾6584) Stress Urge Mixed Other A general practitioner and:or a doctor at a hospital and:or some other doctor. Chi-squared tests performed for all possible pairs. After corrections (see Methods section) pb0.05 for all comparisons except for the differences between urge:mixed and urge:other that were non-signi cant.

4 The Norwegian EPINCONT Study 05 Table II. Crude and adjusted analyses of factors associated with consulting a doctor for urinary incontinence. OR crude 95% CI OR adjusted 95% CI Scand J Prim Health Care Downloaded from informahealthcare.com by on 05/20/4 Age Severity Slight Moderate Severe Impact No problem A minor nuisance Some bother Much bothered A great problem Type Stress Urge Mixed Other Duration 0 5 years 5 0 years \ 0 years Not given Seen a doctor 2 in last 2 months No Yes Adjusted analyses: Multiple logistic regression model with all factors included. 2 A general practitioner and:or a doctor at a hospital and:or some other doctor. DISCUSSION Only one out of four incontinent women had seen a doctor about their symptoms. The consultation rate increased with increasing age, severity and impact of the symptoms, and duration of the condition. Women with stress incontinence were less likely to seek help than women with urge or mixed incontinence. There was also an association between having seen any doctor during the last year and ever having consulted a doctor for incontinence. A strength of this survey is its size and the fact that the whole population in a community was invited. The overall response rate for HUNT 2 was good, but the youngest and the eldest women did not participate to the same degree as the middle-aged women (2). This may have introduced some bias to the prevalence estimates, but we have no indications of how this may have affected our results on consultation behaviour. We do not have data on reasons for seeking or not seeking help, which might have given a fuller picture of the issue. The questions may be interpreted differently among the participants, but the severity index has been validated and shown to be a useful tool by which to predict severity (4,5). As the study is cross-sectional, we cannot document causality, but we describe independent associations. We con rm crude consultation rates from some previous studies conducted with similar methods and populations (9,0,6) and elaborate on the factors associated with the phenomena. We found that incontinent women are more likely to seek help the more severe and bothering their symptoms are. This may seem a matter of course and has also been shown in previous studies (9,0,7,8). But still a striking paradox remains; only half of the women with moderate:severe and troublesome incontinence have visited a doctor because of their leakage. Con icting ndings of consultation rates with increasing age have been found, some showing increased rate (9,6), others indicating no effect of age

5 06 Y.S. Hannestad et al. Scand J Prim Health Care Downloaded from informahealthcare.com by on 05/20/4 (9,20), or a decrease with age (0). In a study of women aged 65 80, it was concluded from a multiple regression analysis that increasing age led to less consultation (20). We did not nd a similar trend for this age group, but rather that the consultation rate remained stable for women over 60. There is a higher prevalence of severe incontinence with increasing age. Our results show that this does not alone account for the increasing consultation rate with age, as age seems to be an important independent factor for consulting besides severity and impact. This may be a cumulative effect; older women with a longer career as patients have had more opportunities to mention their complaint to a doctor. More contact with a doctor last year for incontinent help-seeking women indicates a higher prevalence of other complaints and diseases and:or different thresholds or attitudes towards help-seeking in general in this group. Previous studies have shown a lower consultation rate for the stress-incontinent women compared with the other types (6,9,20). We demonstrate the same pattern in the crude relationship between type and consultation. However, the effect of type on consultation is weak after adjustment for other variables in the logistic regression analyses. This indicates that most of the type-dependent differences in consultation rate are due to different degrees of variables such as severity and impact. The association between consultation rate and length of education disappeared when controlling for age; the higher consultation rate among women with lower education was a function of their higher age. We did not include data on marital status in our nal analyses as the data set did not include co-habitant as a category and thus did not give enough relevant information. Our study has shown that many women choose not to seek help for their incontinence. They may have found ways of coping with their leakage, but many of them are troubled by their symptoms and could probably bene t from treatment. The most important treatment modalities for urinary incontinence are available and feasible in general practice and the results of treatment have been convincingly good (6 8). Many of the explanations given in the existing literature as to why women do not seek help for urinary incontinence seem based on a lack of information. It is a challenge to provide appropriate treatment for incontinence and information about the different options so that a woman actively can decide whether to seek help and treatment or to cope with her problems some other way, and not just resign because she thinks there is no help available. Only one of four incontinent women and only one of two with signi cant incontinence have sought help for their symptoms. The more troublesome a woman nds her leakage, the more severe the leakage is and the older she is, the more likely she is to consult a doctor. ACKNOWLEDGEMENTS The Nord-Trøndelag Health Study (The HUNT Study) is a collaboration between the HUNT Research Centre, Faculty of Medicine, Norwegian University of Science and Technology (NTNU), Verdal, the National Institute of Public Health, the National Health Screening Service of Norway, and Nord- Trøndelag County Council. The EPINCONT Study was also supported by the Research Council of Norway. REFERENCES. Hunskaar S, Arnold EP, Burgio K, Diokno AC, Herzog AR, Mallett VT. Epidemiology and natural history of urinary incontinence. Int Urogynecol J 2000;: Hannestad YS, Rortveit G, Sandvik H, Hunskaar S. A community-based epidemiological survey of female urinary incontinence: the Norwegian EPINCONT study. Epidemiology of Incontinence in the County of Nord-Trondelag. J Clin Epidemiol 2000;53: Hunskaar S, Vinsnes A. The quality of life in women with urinary incontinence as measured by the sickness impact pro le. J Am Geriatr Soc 99;39: Sandvik H, Kveine E, Hunskaar S. Female urinary incontinence psychosocial impact, self care, and consultations. Scand J Caring Sci 993;7: Wyman JF, Harkins SW, Choi SC, Taylor JR, Fantl JA. Psychosocial impact of urinary incontinence in women. Obstet Gynecol 987;70: Seim A, Sivertsen B, Eriksen BC, Hunskaar S. Treatment of urinary incontinence in women in general practice: observational study. BMJ 996;32: Jolleys JV. Diagnosis and management of female urinary incontinence in general practice. J R Coll Gen Pract 989;39: Lagro-Janssen ALM, Debruyne FMJ, Smits AJA, van Weel C. The effects of treatment of urinary incontinence in general practice. Fam Pract 992;9: Holst K, Wilson PD. The prevalence of female urinary incontinence and reasons for not seeking treatment. NZ Med J 988;0: Rekers H, Drogendijk AC, Valkenburg H, Riphagen F. Urinary incontinence in women from 35 to 79 years of age: prevalence and consequences. Eur J Obstet Gynecol Reprod Biol 992;43: Reymert J, Hunskaar S. Why do only a minority of perimenopausal women with urinary incontinence consult a doctor? Scand J Prim Health Care 994;2: Norton PA, MacDonald LD, Sedgwick PM, Stanton SL. Distress and delay associated with urinary incontinence, frequency, and urgency in women. BMJ 988;297: Mitteness LS. Knowledge and beliefs about urinary incontinence in adulthood and old age. J Am Geriatr Soc 990;38:374 8.

6 Scand J Prim Health Care Downloaded from informahealthcare.com by on 05/20/4 The Norwegian EPINCONT Study Sandvik H, Seim A, Vanvik A, Hunskaar S. A severity index for epidemiological surveys of female urinary incontinence: Comparison with 48-hour pad-weighing tests. Neurourol Urodyn 2000;9: Hanley J, Capewell A, Hagen S. Validity study of the severity index, a simple measure of urinary incontinence in women. BMJ 200;322: Seim A, Sandvik H, Hermstad R, Hunskaar S. Female urinary incontinence consultation behaviour and patient experiences: an epidemiological survey in a Norwegian community. Fam Pract 995;2: Lagro-Janssen TLM, Smits AJ, van Weel C. Women with urinary incontinence: self-perceived worries and general practitioners knowledge of problem. Br J Gen Pract 990;40: Schulman C, Claes H, Matthijs J. Urinary incontinence in Belgium: a population-based epidemiological survey. Eur Urology 997;32: Herzog AR, Fultz NH, Normolle DP, Brock BM, Diokno AC. Methods used to manage urinary incontinence by older adults in the community. J Am Geriatr Soc 989;37: Burgio KL, Ives DG, Locher JL, Arena VC, Kuller LH. Treatment seeking for urinary incontinence in older adults. J Am Geriatr Soc 994;42:208 2.

Urinary Incontinence after Vaginal Delivery or Cesarean Section

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