Preferences for involvement in treatment decision-making among Norwegian women with urinary incontinence

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1 Acta Obstetricia et Gynecologica. 2007; 86: ORIGINAL ARTICLE Preferences for involvement in treatment decision-making among Norwegian women with urinary incontinence MÁIRE O DONNELL & STEINAR HUNSKAAR Section for General Practice, Department of Public Health and Primary Health Care, University of Bergen, Norway Abstract Background. Current health policies advocate patient participation in treatment decision-making. Objective. To explore whether role preferences among women with urinary incontinence (UI) change depending on the treatment decisionmaking context. We also explore what factors are associated with role preferences and changes in role preferences. Methods. A national telephone survey of 265 women with UI identified from 1,000 randomly selected Norwegian women aged 18 or over. The interview included questions on socioeconomic factors, general health status, UI-related factors, and role preferences. Women were categorised as preferring an active, collaborative, or passive role in treatment decision-making based on their selection of a response from the Control Preferences Scale. Results. Women s preferences changed significantly when considering UI treatment decision-making compared to treatment decision-making generally (p B0.001). A total of 60% preferred an active role in UI treatment decisions compared to 38% when considering treatment decisionmaking generally. Multivariable analyses found that higher education was significantly associated with preferring an active role in general treatment decision-making. For UI treatment decision-making, women aged 60 or over and those who were married or had a partner were less likely to prefer an active compared to a collaborative role. Conclusions. Women with UI prefer a more active role when considering UI treatment decision-making compared to treatment decision-making generally. Factors associated with role preferences vary depending on the decision-making context, with older women and those who were married or had a partner more likely to prefer an active role when considering UI treatment decision-making. Key words: Treatment decision-making, decisional preferences, urinary incontinence, Norway Urinary incontinence (UI) is a common condition with as many as 25 40% of community-dwelling adult women experiencing symptoms with prevalence increasing with age (1,2). Although it can have a significant impact on a person s quality of life (3 5), only about one-fourth of women consult a doctor about their UI, with older women and those with more severe symptoms being more likely to seek medical care (6). Although patient participation in treatment decision-making is increasingly advocated, variations in role preferences exist, with some studies reporting a high preference for an active role, and others a high preference for a passive role (710). The impact of socio-demographic factors on decisional preferences is also unclear, with some studies reporting role preference variations according to gender, age, education, and marital status, while others do not (711). Lack of information or medical knowledge has been reported as hindering greater involvement in treatment decision-making (12). Other possible factors impacting on role preferences include the nature, severity and stage of a disease (13,14), and the context of the treatment decision (15). Opportunities exist for women to participate in the UI treatment decision-making process, and positive benefits have been reported by patients who were able to choose the UI management techniques they preferred (16). In this study, we explore whether preferences for involvement in treatment decision-making change when women with UI are asked about treatment decision-making generally, and UI treatment Correspondence: Máire O Donnell, Section for General Practice, Department of Public Health and Primary Health Care, University of Bergen, P.O. Box 7804, 5020 Bergen, Norway. maire.odonnell@isf.uib.no (Received 22 January 2007; accepted 14 July 2007) ISSN print/issn online # 2007 Taylor & Francis DOI: /

2 Decisional preferences among women with UI 1371 decision-making specifically. We also explore what factors are associated with role preferences and changes in role preferences. Methods Data collection A national telephone survey of a representative community sample of 1,000 women was carried out over a period of 4 weeks in April/May 2006 using the Norwegian telephone number database as our sampling frame. The criteria for eligibility were that respondents were female and aged 18 years or over. A total of 15,576 numbers (10,820 land lines and 4,756 mobile telephone numbers) were randomly dialed. Of these, 6,311 were not eligible, 3,539 refused or did not have the time to participate within the study period, and 4,726 were unobtainable (up to 6 attempts were made to establish contact). In households with more than one eligible participant, the interviewer asked to speak to the woman who next celebrated her birthday. After 48 interviews were completed using the mobile telephone number sampling frame, it was decided that further women selected from this group should be aged years of age, as we thought we would be more successful in contacting females from this age group using the mobile rather than the landline sampling frame. This was to ensure that sufficient numbers of interviews were conducted with this younger age group, as a pre-analysis of age group breakdown after one-third of all interviews had been completed showed that this group was under-represented. Study participants A total of 265 women with UI identified from the 1,000 randomly selected Norwegian women aged 18 or over. Measures Urinary incontinence. UI was defined as any leakage or involuntary loss of urine, conforming to standards recommended by the International Continence Society (17). Women identified as having UI were asked more specific questions relating to UI characteristics and help-seeking behaviour. A severity index was calculated based on frequency and amount of leakage (18), and the incontinence was then categorised into slight, moderate, severe or very severe. Knowledge of UI treatments was assessed by first telling women that a number of treatments exist for the treatment of UI symptoms, and then asking women to assess their self-perceived knowledge of these treatments using a 4-item Likert scale, ranging from extensive knowledge to no knowledge of UI treatments. Preferences for involvement in treatment decisionmaking. The Control Preferences Scale (CPS), an easily administered, valid and reliable measure, was used to elicit women s preferences for involvement in treatment decision-making (19). Women were asked to select one of five responses that best described the extent to which they wanted to be involved in treatment decision-making generally, and UI treatment decision-making specifically (Box 1). Other. General health status was assessed using a 4- item Likert scale, ranging from poor general health to very good general health. In addition, the questionnaire included socio-demographic data, such as age, educational level and martial status. Sequence of questions Questions on general health and general preferences for involvement in treatment decision-making were asked at the beginning of the telephone interview. Women were asked about their knowledge of possible UI treatments and their preferences for involvement in UI treatment decision-making prior to being asked whether they experienced UI. Socio-demographic data was collected at the end of the interview. The presentation order of the CPS categories was randomised for each of the participants to avoid bias resulting from order effects. Box 1 General question: We wish to know how people generally make decisions about treatment with their doctor. We are interested in what you think is best for you. There are no right or wrong answers to the question. I will read out five statements on how a person can make a decision about treatment. I would like you to choose which statement best describes how you would like a decision about treatment to be made. UI specific question: Imagine you have to make a decision about treatment for leakage of urine. Which one of the following five statements describes best how you would like a decision about treatment for leakage of urine to be made? The five responses women could choose from were: I prefer: A. To make the decision on my own. B. To make the decision after considering my doctor s opinion. C. That my doctor and I share responsibility for making the decision. D. That my doctor makes the decision after considering my opinion. E. That my doctor makes the decision on his/her own.

3 1372 M. O Donnell and S. Hunskaar Data analysis Descriptive statistics are reported on women s age, education, UI characteristics, self-perceived knowledge of UI treatments, and help-seeking behaviour. Age was categorised into 3 age groups: 1844, and 60 years and over. We also combined some of the categorical variables to ease the interpretation of results. x 2 Tests for proportions were performed to explore differences in preferences for involvement in treatment decision-making generally, and for UI specifically. Changes in individual preferences from a general to a UI-specific decision-making context were calculated by subtracting CPS scores for the UI treatment question from the general question (using all five CPS responses). A positive score was categorised as representing a preference for more involvement in UI treatment decision-making, a zero score as a preference for equivalent involvement, and a negative score as a preference for less involvement in UI treatment decision-making. Possible predictors of changes in role preferences from a general to a UIspecific context were also explored. x 2 Tests for proportions were also performed to explore the relationship between women s sociodemographic and general health status, and their preferences for involvement in treatment decisionmaking generally and UI specifically, and the relationship between women s UI-related factors (UI type, severity, bothersomeness of UI, knowledge of UI, and help-seeking behaviour), and preferences for involvement in treatment decision-making for UI specifically. Multivariable analyses were also conducted to explore factors associated with role preferences. The likelihood of choosing an active or a passive role compared to a collaborative role was explored. The collaborative role was chosen as the reference group as it is generally assumed to be the closest to the shared decision-making role that is advocated in the clinical encounter. For treatment decision-making generally and UI specifically, all socio-economic factors (age, education level, marital status) and general health status were included in the models because of the suggested impact of these factors in previous studies, and the interaction between some of these variables. For UI treatment decision-making specifically, UI-related variables were only included in the model if they were significant at the p B0.1 level in bivariate analysis. For bivariate and multivariable analyses the dependent variable, women s preferences for involvement in treatment decision-making was categorised into 3 groups, active (AB), collaborative (C) and passive (DE) based on previous research (8,9). Statistical significance was accepted at the 5% level. Results The socio-demographic, general health and UIrelated characteristics of women with UI are presented in Table I. There were significant differences in women s role preferences for UI compared to general treatment decision-making (p B0.001). Some 60% of women preferred an active role (A B) in UI treatment decision-making, whereas 38% of Table I. Socio-demographic, general health and UI related variables (n265). Variable No. % Age Mean (SD) 52.9 (917) Range Age group (years) Duration of education (years) Mandatory\high school (10 12 years) Further\university (13 years) Marital status Married\partner Divorced\widowed\single General health status Poor 8 3 Not so good Good Very good Knowledge of UI treatments Extensive Some Little None UI severity Mild Moderate Severe\very severe 23 9 UI type Stress incontinence Urge incontinence Mixed incontinence Other Bothersomeness of UI No problem A small nuisance\some bother Much\major bother Consulted a doctor about UI Yes No

4 Decisional preferences among women with UI Active (A) Active (B) Collaborative (C) women chose this role when asked about treatment decision-making generally (Figure 1). Changes in role preferences from general to UI specific scenario Some 54% of women (n 141) chose the same response when asked about their preferences for involvement in UI treatment decision-making and treatment decision-making in general. A total of 38% (n 100) preferred more involvement, and 8% (n 21) less involvement when asked about 23 Passive (D) General UI Specific Figure 1. Preferences for involvement in treatment decisionmaking generally and in UI treatment decision-making specifically (n265). 3 Passive (E) 3 preferences for involvement in UI treatment decision-making compared to treatment decision-making in general. As the number of women changing their preferred role to a more passive one was so small (n 21) when considering UI treatment decision-making, they were not analysed further. No significant associations were found between socioeconomic factors (age, level of education, marital status), general health status or UI-related factors (UI type, severity, bothersomeness of UI, UI help-seeking behaviour, knowledge of UI treatments) and preferring more involvement when considering UI treatment decision-making compared to treatment decision-making generally in bivariate analyses (data not shown). Factors associated with preferences for involvement in treatment decision-making Socio-demographic and general health status factors associated with preferences for involvement in treatment decision-making generally and for UI treatment decision-making using bivariate analyses, are shown in Table II. Education level was significantly associated with general role preferences (p B0.005), with women with a higher educational level preferring an active role in treatment decision-making generally (47 versus 26%). Age and general health status were significantly associated with preferences for involvement in UI treatment decision-making, with older women and those with a poorer general health status less likely to prefer an active role in UI treatment decision-making. No significant associations were found between UI treatment Table II. General and UI specific treatment decision-making preferences: percentage of women with each role preference by sociodemographic and general health status factors. General UI specific Active Coll Passive p Active Coll Passive p Age group B Level of education Mandatory\high school (10 12 years) B Further\university (13 years) Marital status Married\partner Divorced\widowed\single General health status B0.05 Poor Not so good Good Very good

5 1374 M. O Donnell and S. Hunskaar decision-making preferences and any of the UIrelated factors in bivariate analyses (data not shown). Socio-demographic and general health status factors associated with preferences for involvement in treatment decision-making generally, and for UI specifically, using multivariable analyses are shown in Table III. When considering treatment decisionmaking generally, education remained significantly associated with preferring an active role (p B0.05) compared to a collaborative role. For UI treatment decision-making, age and marital status were significantly associated with preferring an active role (p B0.05), with women aged 60 or over and those who were married or had a partner less likely to prefer an active compared to a collaborative role. Discussion This survey, to the authors knowledge, is the first to survey a community sample of Norwegian women with UI about their preferences for involvement in treatment decision-making generally, and UI treatment decision-making specifically. A previous study of 146 Norwegian female UI outpatients reported an almost equal distribution of women preferring active, collaborative and passive roles (20). Our study reported similar distributions among 265 community-dwelling women suggesting similar general role preferences among community and patient UI populations. Our sample of 1,000 women was representative of the national population (own data on file), and the UI subpopulation was very consistent with a large Norwegian community-based study of UI (6). Nonresponse to the telephone survey is a possible source of bias. However, it is highly unlikely that nonresponse is associated with UI as women were not aware that UI was a survey topic at entry to the study. Our relatively small group of 265 women with UI may for subgroup analyses increase the risk of Type II errors where no significant differences are observed when in fact they actually exist. Among women with UI, significant differences were observed in role preferences when considering treatment decision-making generally and UI specifically, with women with UI preferring a more active role when considering UI treatment decision-making. Table III. Multinominal regression for active and passive role preferences compared with collaborative preferences in general and UI specific treatment decision-making: adjusted odds ratios, 95% CIs and p values. Active role preference Passive role preference Estimate OR (95% CI) p Value Estimate OR (95% CI) p Value General treatment decision-making Age ( ) ( ) ( ) ( ) Higher education$ ( ) B ( ) Married\partner% ( ) ( ) General health status Poor 1 1 Not so good ( ) ( ) Good ( ) ( ) Very good ( ) ( ) UI specific treatment decision-making Age ( ) ( ) ( ) B ( ) 0.29 Higher education$ ( ) ( ) 0.42 Married\partner% ( ) B ( ) 0.08 General health status Poor 1 1 Not so good ( ) ( ) Good ( ) ( ) Very good ( ) ( ) $Further or university education as opposed to l2 years or less education.%as opposed to divorced\widowed\single.

6 Decisional preferences among women with UI 1375 A previous study also found that patient preferences for general decision-making correlated poorly with preferences in specific scenarios (15). Previous research suggests that prior experience of an illness increases the patient s desire for participation in decision-making in relation to that illness (21), which could explain why women with UI in our sample were more likely to prefer an active role in treatment decision-making about UI. However, recent research in a Norwegian female general population reported no significant differences in role preferences for involvement in UI treatment decision-making between women with and without UI, suggesting that the influence of experiencing UI on UI decision-making preferences is weak (22). Previous research has reported conflicting results on the impact of socio-demographic factors on decisional preferences (711). Our study found an association between some socio-demographic factors and role preferences among women with UI, although these varied depending on the decisionmaking context. Higher education was significantly associated with preferring an active role in general treatment decision-making, and age and marital status were significantly associated with role preferences for involvement in UI treatment decisionmaking specifically. The impact of socio-demographic factors on preferences for involvement in treatment decision-making may, therefore, also vary depending on the treatment decision-making situation women are considering. Women who were married or had a partner were less likely to prefer an active compared to a collaborative role. These women may generally be more likely to share decision-making, and this is reflected in their preference for a collaborative role also in the patient doctor relationship. It is often assumed that lack of information or medical knowledge of a condition can hinder greater involvement in treatment decision-making (12). Our study found no association between role preferences among women with UI and their perceived knowledge of UI treatments. It may be that knowledge of a condition and possible treatments may only come into play when a person is actually in the treatment decision-making situation, and does not necessarily influence their preferences for involvement when asked to consider that specific treatment decisionmaking situation. Other possible factors that may influence preferences include the nature, severity and stage of a disease (13,14). We found no associations between UI type, severity, bothersomeness of UI or UI help-seeking behaviour and preferences for involvement in treatment decision-making for UI specifically. Such factors may have an impact when considering serious diseases, such as cancer, but may be less important when considering common non life-threatening conditions, such as UI. Conclusions Women with UI prefer a more active role when considering treatment decision-making for UI compared to treatment decision-making generally. Factors associated with role preferences also vary depending on the decision-making context. When considering UI treatment decision-making, women s age and marital status play a role. Acknowledgements We would like to thank all the women who participated in this study, and Norsk Respons, Bergen, for carrying out the telephone interviews. Máire O Donnell has a PhD research grant from the Western Norway Regional Health Authority. References 1. Hunskaar S, Arnold EP, Burgio K, Diokno AC, Herzog AR, Mallett VT. Epidemiology and natural history of urinary incontinence. Int Urogynecol J. 2000;/11:/ Hannestad YS, Rortveit G, Sandvik H, Hunskaar S. 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