Urinary, Sexual, and Bowel Dysfunction and Bother after Radical Prostatectomy

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1 Urinary, Sexual, and Bowel Dysfunction and Bother after Radical Prostatectomy Bryan A. Weber Beverly L. Roberts Neale R. Chumbler Terry L. Mills Chester B. Algood Radical prostatectomy results in greater persistence of erectile and urinary dysfunction (and to a minor degree, bowel dysfunction) than other forms of prostate cancer treatment (Stephenson et al., 2005). These physical side effects of treatment limit daily activities and interfere with a man s masculinity and role performance, thus creating bother, which refers to the degree of annoyance, dysfunction, or discomfort associated with the radical prostatectomy (Litwin et al., 1999). Given various treatment options for prostate cancer, men who undergo radical prostatectomy initially decide the physical dysfunction is worth the benefits of improved likelihood of sur- Bryan A. Weber, PhD, is an Assistant Professor of Nursing, the University of Florida, Gainesville, FL. Beverly L. Roberts, PhD, is the Annabel Davis Jenks Professor of Nursing, the University of Florida, Gainesville, FL. Neale R. Chumbler, PhD, is a Research Health Scientist, VA HSR&D/RR&D Rehabilitation Outcomes Research Center, North Florida/South Georgia Veterans Health System, and the University of Florida, Gainesville, FL. Terry L. Mills, PhD, is the Margaret Mitchell Marsh Dean, Division of Humanities and Social Services, Morehouse College, Atlanta, GA. Chester B. Algood, MD, is a Clinical Assistant Professor of Urology, the University of Florida, Gainesville, FL. Radical prostatectomy results in greater persistence of urinary and sexual dysfunction (and to a minor degree, bowel dysfunction) than other forms of prostate cancer treatment. These physical side effects create bother, which is the degree of annoyance, dysfunction, or discomfort associated with treatment aftermath. The purpose of this study was to assess the relationships between post-radical prostatectomy urinary, sexual, and bowel dysfunction, and the resultant bother to determine which of the physical dysfunctions bothers men the most. Introduction Radical prostatectomy results in greater persistence of urinary and sexual dysfunction (and to a minor degree, bowel dysfunction) than other forms of prostate cancer treatment. These physical side effects create bother, which is the degree of annoyance, dysfunction, or discomfort associated with treatment aftermath. Objective The purpose of this study was to assess the relationships between postradical prostatectomy urinary, sexual, and bowel dysfunction, and the resultant bother to determine which of the physical dysfunctions bothers men the most. Method Seventy-two men were recruited and surveyed 6 weeks after radical prostatectomy. Outcome measures included selfefficacy (Stanford Inventory of Cancer Patient Adjustment), social support (Modified Inventory of Socially Supportive Behaviors), uncertainty (Uncertainty in Illness Scale), and physical function and bother (UCLA Prostate Cancer Index). Results Sexual dysfunction had the highest prevalence among treatment side effects caused by radical prostatectomy. However, it was urinary dysfunction in terms of incontinence that was the most bothersome. Conclusions Given various treatment options for prostate cancer, men who undergo radical prostatectomy initially decide that the physical dysfunction is worth the benefits of improved likelihood of survival; however, they do so without firsthand knowledge of the associated bother. Patients should be informed of the transient and unrelenting physical symptoms and associated bother that are produced after radical prostatectomy. vival; however, they do so without firsthand knowledge of the associated bother (Arai et al., 1999). Relatively few men have well-established coping mechanisms for erectile dysfunction (ED) and urinary incontinence (UI) due to co-morbidity, side effects of medications, and to some extent, the aging process Authors Note: Funding support was provided by the National Cancer Institute (R03CA96204). This material is the result of work supported with resources and use of facilities at the VA HSR&D/RR&D Rehabilitation Outcomes Research Center, North Florida/South Georgia Veterans Health System, Gainesville, FL. UROLOGIC NURSING / December 2007 / Volume 27 Number 6 527

2 (Althof, 2002; Bellastella et al., 2005; Dubeau, 2006; Litwin, Nied, & Dhanani, 1998; Seidman, 2002). Recent evidence indicates that after several years, men who undergo radical prostatectomy learn to adapt to erectile dysfunction and urinary incontinence, and symptoms become less bothersome (Litwin et al., 1999; Litwin, Pasta, Yu, Stoddard, & Flanders, 2000; Litwin, Sadetsky, Pasta, & Lubeck, 2004). However, adaptation may not be limited to the cumulative effect of time passing. Empirical evidence suggests that bother is also influenced by a complex set of factors such as demographic characteristics (such as age, education, and marital status), self-efficacy (one s confidence in the ability to reach a desired outcome), and uncertainty in illness, among others (Bandura, 1997; Lazarus & Folkman, 1984; Mishel & Braden, 1987; Mishel et al., 2003; Mishel, Padilla, Grant, & Sorenson, 1991; Vaux, 1988). There is little or no evidence, however, that indicates which physical dysfunction (urinary, sexual, or bowel) is most frequently related to bother and how bother is affected by these other factors. Urinary incontinence represents a constant reminder of prostatectomy aftermath by interfering with a man s daily activities, requiring use of incontinence pads that add considerable bulkiness to clothing and creating concern about the odor from urinary leakage. Moreover, UI may also impede sexual activity, but the same is not true for sexual dysfunction interfering with urinary control. In contrast, a man is made aware of the sexual consequences from radical prostatectomy less frequently, but ED interferes with a man s sense of self in terms of masculinity, and it may limit the relationship he has with his significant other. Thus, research that focuses on the dysfunctionbother relationship is important, since it may result in greater understanding of the survivorship experience after radical prostatectomy, may lead to interventions designed to combat bother associated with the inevitable consequences of this surgery, and may identify the contributing factors and characteristics that mitigate bother from urinary, sexual, and bowel dysfunction. This study had two primary goals: (a) assess relationships between post-radical prostatectomy physical dysfunction (urinary, sexual, and bowel) and resultant bother to determine which of the physical dysfunctions bothers men the most; and (b) use multivariate modeling to determine whether there was a significant association among demographic characteristics, self-efficacy, social support, and uncertainty in illness and risk for physical dysfunction or bother. METHODS This study took place within the context of a larger project that assessed the effects of an 8- week peer support intervention for men who had a radical prostatectomy (Weber et al., 2007). The data for this study were collected by telephone interview using the standardized instruments described below. Eighty-one men aged 45 years and older, who underwent a radical prostatectomy at tertiary care medical centers, were surveyed 6 weeks after surgery. This time point coincides with documented patient realization that the physical side effects (urinary, sexual, and bowel dysfunction) that occur after radical prostatectomy are unrelenting (Weber et al., 2007). Since radical prostatectomy is limited to men whose cancer is confined to the prostatic capsule, the stage of disease among participants was controlled to those with localized cancer. None of the men received neoadjuvant/adjuvant hormone or radiation therapy while participating in this study. Thus, physical symptoms and bother were not confounded by the effects of these treatment modalities. Measures Self-efficacy refers to the belief a man has in his ability to function when presented with a series of domain-specific problems (Bandura, 1997). It was assessed with the 38-item Stanford Inventory of Cancer Patient Adjustment (SICPA) (Telch, 1985). Men rated items from 0 not at all confident to 10 completely confident for items reflecting their confidence to function in the areas of domainspecific problems related to prostate cancer. Domains assessed included medical treatment, communication, activity, personal management, affective state, and self-satisfaction. Items were rated on an 11-point scale on which men indicated their level of confidence according to the following: 0 to 3 indicated no confidence to slight confidence, 4 to 6 moderate confidence, 7 to 8 very confident, and 9 to 10 complete confidence. Ratings were summed (total scores ranged from 0 to 380) with higher scores indicating higher efficacy. In this study the SICPA had a Cronbach s alpha of 0.96 (reliability). SIPCA scores correlate highly with Profile of Mood States scores (r = -0.73), suggesting good criterion-related validity. Social support consists of behaviors and appraisal of support. This was measured using the 41-item Modified Inventory of Socially Supportive Behaviors (Krause & Markides, 1990), which tapped the four dimensions of social support (tangible, integration, informational, and emotional). Tangible support involves offering assistance by way of monetary contribution, support in kind, labor, and time. Integration support involves an exchange for the purpose of affirmation, feedback, or social comparison. Informational support involves the provision of information to be used in coping with a stressful event or environmental problems. Lastly, emotional support involves empathy, caring, trust, and love. Study participants rated support from 0 never to 4 very often, and scores ranged from 0 to 164. Responses were summed with higher scores indicating greater 528 UROLOGIC NURSING / December 2007 / Volume 27 Number 6

3 social support. The measure averages good internal consistency with a Cronbach s alpha that ranged from 0.67 for tangible support to 0.83 for emotional support (Krause, Herzog, & Baker, 1992; Krause & Markides, 1990). In this study, the total scale had good internal consistency with a Cronbach s alpha of Uncertainty was measured with the Mishel Uncertainty in Illness Scale used to assess ambiguity, complexity, lack of information, and unpredictability associated with illness, diagnosis, and treatment (Mishel & Sorenson, 1991). The measure comprises 28-items that are rated on a Likert scale from strongly agree to strongly disagree. Scores range from 0 to 140 with higher scores indicating greater uncertainty, and Mishel reports the scale has good reliability (Cronbach s alpha 0.90). In this study the total scale had good internal consistency with a Cronbach s alpha of Physical function and bother were both measured with the UCLA Prostate Cancer Index (Litwin et al., 1998). The scale consists of 15 disease-related items (including urinary, bowel, and sexual function) and the extent to which these functional impairments create bother (annoyance). Respondents rated function by reporting frequency of functional impairment in the areas of urinary, bowel, and sexual dysfunction/control (range of 1-4 that spanned dysfunction occurs every day to not at all, and no control to total control ). In addition, the number of incontinence pads used daily was assessed as a measure of urinary leakage (1-4 that spanned three or more to none ). Bother was measured as the degree of annoyance that urinary, bowel, or sexual dysfunction created, and men rated these areas on a 5-point Likert scale. For example, subjects rated dripping urine or wetting their pants from 0 no problem to 4 big problem. Men experience UI in varying degrees; however, incontinence may be more bothersome when it interferes with sexual activity than when it interferes with daily activities for which specialized undergarments can be worn. Function and bother ratings from this measure were averaged into six separate subscales: one each for urinary function and bother, sexual function and bother, and bowel function and bother. Higher scores indicated better function and less bother. Litwin and co-workers (1998) reported Cronbach s alphas that ranged from 0.87 for urinary to 0.93 for sexual domains. In this study, the total scale had a Cronbach s alpha of 0.95 with subscales ranging from 0.60 for bowel function to 0.83 for urinary function. Statistics Frequencies and measures of central tendency were used to determine the prevalence of physical function and bother after radical prostatectomy. Most measures were significantly skewed and transformation did not correct the problems. Thus, Spearman s correlations were used to identify potential covariates (age, education, marital status, self-efficacy, social support, uncertainty in illness, and physical function and bother) and were computed to determine the portion of explained variance between the co-variates. For the multivariate models, the dependent variables were physical function and bother for urinary, sexual and bowel domains. Significant co-variates were regressed on the dependent variables to estimate the effect the co-variate had on the dependant variables. RESULTS Of the 81 men recruited, seven were lost to followup, and two men relocated, making them ineligible for the larger intervention study of which this study was a part. Complete data were available on 72 men, the majority of whom were white (83%), had an overall mean age of 59.8 years (range years), and worked full or part-time (56.3%), thus having to contend with incontinence during part or all of the work day (see Table 1). Seventythree percent of the men were married and presumably had an active sex life prior to radical prostatectomy (Lin & Kelly, 2000). Consequently, sexual dysfunction, if present, likely affected not only their sense of self and masculinity but to some degree their marital dyad. The mean for sexual function (M=11.8, SD=15.1) was lower than it was for urinary (M=39.4, SD=26.2) or bowel (M=75.1, SD=19.5) function. However, urinary symptoms created the most bother (M=39.3, SD=34.2) when compared to sexual or bowel bother (M=42.1, SD=40.3) and M=77.5, SD=25.6, respectively) (see Table 2). Moreover, sexual function and bother were not significantly related in correlation analysis. In contrast, urinary and bowel function and bother were significantly correlated. The correlation between bowel function and bother was high (r=0.503), but urinary function and bother had the highest correlation (r=0.741). As expected, men experienced less bother in each of these areas as function improved. None of the study participants reported having little to no cancer self-efficacy. However, 10% had moderate self-efficacy, 25% had high self-efficacy, and 65% had very high self-efficacy. Theoretically, men were expected to have little to no confidence in dealing with prostate cancer and the aftermath of radical prostatectomy since it was accompanied by new and unfamiliar experiences (Bandura, 1997). Thus, individual items on the self-efficacy measure were assessed to determine if there were relevant areas of concern to men after radical prostatectomy. It was determined that the measure only assessed the sexual domain and confidences in urinary or bowel domains were not included. Further, when analyz- UROLOGIC NURSING / December 2007 / Volume 27 Number 6 529

4 Table 1. Sample Demographic Characteristics Mean SD Age n % Race White Black Latino Marital Status Married Divorced Single Widowed Employment Full-time Part-time Retired Disabled Unemployed Education Less than high school High school Some college College Post Graduate Table 2. Outcome Variables Variable Mean SD Range of Scores Urinary Function Bother Sexual Function Bother Bowel Function Bother Self-efficacy Uncertainty Social Support ing data from the sexual domain item, the majority of men (56.5%) indicated they had moderate to no confidence at all in this area. Hence, men with prostate cancer may have lower self-efficacy specific to treatment side effects than patients with other cancers. Fifty-seven percent of men reported low-to-moderate social support (M=100.5, SD=16.7, range ). Although the majority of men were married and had strong social ties for support (Granovetter, 1983), prostate cancer and the urinary, sexual, and bowel dysfunction that result from radical prostatectomy may be stigmatizing and embarrassing topics for discussion. Further, social isolation may increase or be complicated by the timing of support. For example, at the time of data collection (15 weeks after surgery), family and friends typically resume their normal activities, paying less attention to the patient than they did immediately following diagnosis and surgery. Hence, men may not get the support they need at a time equally (or more) stressful as other times in the cancer-treatment-survivorship trajectory. Moreover, many men may interpret seeking support as a sign of weakness. Seventy-five percent of the men reported having moderateto-high uncertainty with the illness, diagnosis, and treatment. Shortly after surgery is a period of ambiguity complicated by treatment side effects, but it is too soon for confirmatory diagnostic prostate-specific antigen testing. Thus, men do not have diagnostic evidence that the surgery eradicated their cancer until later. When analyzing the outcomes to identify co-variates, urinary (r=0.741, p=0.000) and bowel (r=0.503, p=0.000) function were highly correlated to the respective bother. Social support (r= , p=0.015) was moderately related to urinary bother and was the only variable identified empirically by others that had a significant relationship to 530 UROLOGIC NURSING / December 2007 / Volume 27 Number 6

5 an outcome of interest in this study (such as urinary bother), even when controlling for the effects of physical function. Furthermore, social support in this study was negatively correlated with urinary bother (r= , p=0.015). Hence, men who are bothered by urinary symptoms may need more support than men who have urinary control. However, when entered into the regression model, social support was not a significant predictor of urinary bother (R= , p=0.273) nor were any of the other potential predictors identified in the literature (demographic characteristics, self-efficacy, or uncertainty) (Litwin et al., 1999; 2000; 2004). DISCUSSION This study assessed the relationship between physical function and the bother created for men within 3 to 6 months after radical prostatectomy. To date, there have not been any other reports on these outcomes during this crucial and complex time period. Most research focuses on the long-term effects, after a 1 or 2- year time period, when men have adapted to the physical function alterations brought about by radical prostatectomy. As men adapt to these physical changes, they are less bothered by them. According to Weisman and Worden (1976), the first 100 days after a cancer diagnosis is a period of time filled with concern and distress over health and illness. Given the results of this study, it may be that the initial weeks and months following radical prostatectomy compose another time period of equal hardship for men, when the aftermath of treatment side effects impacts a man s sense of self in terms of masculinity, self-efficacy, and social support. Findings from this study show mixed concurrence with the findings of others. First, it is well known that for most men, bowel dysfunction is transient and shows quick return to normal function shortly after radical prostatectomy, if it was disrupted at all. Indeed, findings from this study show that bowel function is least affected and least bothersome for men after radical prostatectomy. Second, it is well known that sexual function is severely compromised after radical prostatectomy and it leads to severe sexual bother for some men (Deimling, 1999; Litwin et al., 1999; Potosky et al., 2000; Potosky et al., 2004; Stanford et al., 2000; Weber et al., 2004; Weber et al., 2007). Findings from this study show that sexual dysfunction creates bother but there is a large amount of variation among men. This may be due to the fact that for some, sexual dysfunction is not a new experience. They may not even notice a change since dysfunction occurs in this age group for reasons other than treatment for prostate cancer and could be pre- existing. Preexisting causes include co-morbid conditions, side effects of medications, or decreased libido associated with the aging process (Temml, Haidinger, Schmidbauer, Schatzl, & Madersbacher, 2000). The relationship between sexual dysfunction and its associated bother is negatively correlated. Thus, a complex relationship exists between sexual function and bother in the short term (less than 1 year) following radical prostatectomy. A finding from this study as well as others show urinary function drastically declines after radical prostatectomy (Adolfsson, Helgason, Dickman, & Steineck, 1998; Arai et al., 1999; Bates, Wright, & Gillatt, 1998; Bhatnagar, Stewart, Huynh, Jorgensen, & Kaplan, 2006; Bradley, Bissonette, & Theodorescu, 2004; Braslis, Santa-Cruz, Brickman, & Soloway, 1995; Fowler et al., 1995; Goluboff et al., 1998; Litwin et al., 1995; Litwin et al., 1998; Litwin et al., 2000; Perez et al., 1997; Weber et al., 2004; Weber et al., 2007). For men who maintain or regain sexual function sufficient enough to satisfy their sexual needs, UI can interfere with sexual activity. Moreover, relentless UI interferes with a man s role in performing daily activities and routines, particularly as it refers to the clothing he wears and his attempts to disguise bulky incontinence pads and the odor from urinary leakage. Additionally, anecdotal evidence provided in another study indicated men wearing incontinence pads related the experience as demasculinizing, since they associated the routine of using pads to that of women using protective pads during their menstrual cycle (Weber et al., 2004). Thus, men may experience urinary bother by the inconvenience of urinary leakage as well as the annoyance it creates in trying to manage it. Findings from this study show that among the three physical function deficits that emerge after radical prostatectomy, it is sexual function that is affected most severely, but it occurs in the context of a complex set of circumstances common to many older men. Bowel function is the least-affected physical function after radical prostatectomy and creates the least amount of bother. Hence, these findings show new information that it is urinary function and its associated bother that is most important to men after radical prostatectomy since it affects more parts of their lives and is a constant reminder of their inadequacy (Arai et al., 1999; Stanford et al., 2000). Last, there is empirical evidence that demographic characteristics (such as marital status, age, and education), uncertainty in illness, and self-efficacy were significant predictors of bother from physical dysfunction for men, 1 and 2 years after radical prostatectomy (Deimling, 1999; Deimling, Bowman, Sterns, Wagner, & Kahana, 2006; Deimling, Kahana, Bowman, & Schaefer, 2002; Helgeson, Lepore, & Eton, 2006; Litwin et al., 2000; Litwin et al., 1999; Litwin et al., 2004). However, in this study, none of these variables significantly predicted bother. Moreover, even though social support had a significant correlation with urinary bother it also did not emerge as a significant predictor in regression analysis. This suggests that men without adequate support may UROLOGIC NURSING / December 2007 / Volume 27 Number 6 531

6 become socially isolated immediately after radical prostatectomy or they may be stressed by social interaction due to the embarrassment and stigma associated with loss of urinary control. Limitations The sample size for this study was small and thus results may not be generalizable. Findings indicated that the time immediately following radical prostatectomy is complicated but instruments used to measure behavioral outcomes in men after prostate cancer treatment may not be specific to the unique areas of concern for these men. In this study, the instrument used to assess self-efficacy did not specifically operationalize the multifaceted urinary and bowel domains that are important in understanding prostate cancer specific self-efficacy (Bandura, 1997). IMPLICATIONS AND RECOMMENDATIONS Clinicians should highlight the transient and unrelenting physical implications, along with the limitations and annoyance produced as a result of treatment, for prostate cancer after radical prostatectomy. Comprehensive screening that includes identifying men who are affected most by the physical changes brought about by treatment, and the associated bother, available support systems, changes in physical function that may occur as the result of treatment, and the extent to which these changes bother men, among others, should be included. Education and counseling are regular and integral components of care for men who have prostate cancer and have undergone radical prostatectomy, both pre-operatively and postoperatively. This education and counseling can be directed to better inform and prepare patients for the physical side effects they are likely to experience postoperatively. What and how much information should be provided needs to be tailored individually to patient needs and concerns. Recommendations for future research include needed modification of measurement strategies to more accurately understand the survivorship experience men have after radical prostatectomy. Further, research is needed that focuses on the short-term effects of radical prostatectomy since this time period encompasses the enduring patterns and relationships survivors develop to manage iatrogenic side effects and associated bother throughout recovery. CONCLUSIONS The results of this study demonstrate the physical and emotional (in terms of bother) outcomes common to men after radical prostatectomy. Thus, it is concluded that clinicians should highlight the transient and unrelenting physical implications, along with the limitations and annoyance produced as a result of treatment for prostate cancer after radical prostatectomy. 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