Using Epidemiology in Patient Education for Post-Prostatectomy Urinary Incontinence
Among the many men who Henry David Thoreau said, “lead lives of quiet desperation,” the increasing number of American men suffering from urinary incontinence post prostate cancer surgery undoubtedly could be counted. By their own accounts and those of their families and loved ones, these men, already reeling from a personal confrontation with their own mortality and anguished by erectile dysfunction, are forced to engage in a continual daily struggle to maintain urinary continence – a struggle that includes managing and/or concealing their urinary incontinence from others.
This paper reviews the prevalence and incidence of urinary incontinence post prostate cancer surgery and discusses risk factors for post-prostatectomy urinary incontinence. Informational and educational strategies available to men and their caregivers also will be discussed.
The prevalence and incidence of and risk factors for post-prostatectomy urinary incontinence reveal the magnitude of the problem and offer an understanding of factors that place groups within a population at risk. Prevalence and incidence are rates or proportions. Prevalence refers to the portion of a population or group with a specific condition during a specified time interval. Prevalence includes both new and old cases of incontinence; therefore, the numerator is the number of incontinent men during a time frame (such as 1 year) divided by the number of men in the group. The majority of studies address prevalence, as it provides a gauge for resource allocation – highly prevalent conditions may require frequent access to healthcare providers, medications, treatment, and medical equipment and supplies.
Incidence refers to new cases that developed during a specific period of time. The denominator includes only those at risk of developing the condition; therefore, only continent individuals are included. The numerator captures the number of men who became incontinent during a specific time frame (ie, 3 months or 1 year). Knowledge of the pre-existing condition allows researchers to identify factors that placed the person at risk for becoming incontinent. In turn, identifying risk factors helps clinicians to devise educational and clinical strategies to prevent new cases of incontinence and, perhaps, to reverse prevalent cases.
Measurement issues become paramount when trying to determine prevalence and incidence of incontinence. For example, what constitutes a case? Incontinence in some studies was defined as the need to wear pads, and in other studies it was defined as any leakage of urine.1–6 Some studies do not provide a definition for incontinence.7-11 The time interval between surgery and measurement of prevalence also varies in studies. Few studies investigated continence at 1 month post surgery; however, in one study undertaken at that interval, prevalence of urinary incontinence was as high as 87%.1 Prevalence rates at 1 year or more since surgery range from 7% to 85%.
The person or method of reporting incontinence also can influence prevalence. For example, Wei and Montie12 compared the agreement between physicians and their patients. The patients were asked to complete a questionnaire about presence of leakage, frequency of incontinent episodes, use of pads for incontinence, and inconvenience of incontinence. Physicians who were blinded to their patients’ responses were asked to assess incontinence and record it in the medical record. When using any leakage as the definition of incontinence, only 23% agreement occurred between physicians and patients. When using number of pads used a day, agreement increased to 67%. Physicians may more readily note incontinence that requires use of pads or causes bother rather than solely the presence of incontinence. Junemann13 noted that if the surgeon evaluates incontinence, “the results are better” and that it may be easier for a man to report incontinence to a neutral third party rather than reporting it to the surgeon. Until definitions are standardized and measurement of whose perspective (ie, patient versus physician) should be measured is determined, variation in prevalence rates will occur.
Although prevalence provides a sense of the magnitude of the problem, incidence can help focus on factors that place a man at risk for becoming incontinent after surgery. However, to detect incident cases, the researcher must know who was incontinent before surgery and exclude these individuals from the denominator. Only a man who was continent before surgery but who became incontinent after surgery would be considered an incident case. Pre-existing factors may increase vulnerability, or they may be risk factors. For example, in some women, increased body mass index is a risk factor for incontinence.14,15 Researchers investigating urinary incontinence in women also have found racial and ethnic differences.16 By gaining and using the knowledge about risk factors for urinary incontinence after prostatectomy, nurses can shape educational interventions and clinical treatments specifically for men with prostate cancer. This information also provides the foundation for primary prevention strategies – ie, strategies to prevent incontinence from occurring in the first place.
Little is definitively known about risk factors for post prostatectomy incontinence. Few studies have investigated racial or ethnic differences, although Kao and colleagues17 reported that African American men were not at higher risk for postoperative incontinence. Increased age has been reported as a risk factor for incontinence.18 Catalona and colleagues11 reported that return to continence was twice as likely for each decade decrease in men’s ages when comparing men in their 40s, 50s, 60s, and 70s. In addition, these authors found the return to continence was independent of nerve-sparing surgery, use of postoperative radiation, the pre-operative PSA level, and the experience of the surgeon. Other researchers support the finding that older men were more likely to experience more frequent incontinence.18,19
The role of nerve-sparing surgery on postoperative incontinence is unclear. In nerve-sparing surgery, the surgeon preserves one or both of the neurovasular bundles that are situated adjacent to the prostate capsule inferolaterally on either side. During surgery, the surgeon decides, based on the extent of the tumor, to preserve both, one, or none of the neurovascular bundles. Patients with large or bilateral tumors may not receive the nerve-sparing surgery as the surgical margin becomes necessarily smaller to preserve prostate tissue. In short, nerve-sparing surgery may not be an option for some men.
Some studies show that nerve-sparing surgery can be linked to poorer urinary continence outcomes more often than non-nerve sparing surgery,4,19 while other studies found high return to pre-operative continence rates.20 For example, Talcott and his colleagues4 reported that 50% of men who had bilateral nerve-sparing surgery were still wearing pads for incontinence at 3 months after surgery. The percentage dropped to 43% at 12 months. The median age in this study was 62 years (participants had little comorbidity). The authors concluded that other factors such as longer operative time and greater periurethral instrumentation may account for the high rate of incontinence after surgery. In contrast, most men followed after radical prostatectomy reported little incontinence at 12 months (93%) and no or slight inconvenience from the incontinence (98%). Bilateral nerve-sparing surgery was performed in 89% of the patients. The authors suggested that, “the surgical experience is the major factor that influences the morbidity of radical prostatectomy and not the method by which data are collected.”20
Continence may be more related to the size and location of tumor, patient characteristics (ie, age), and other factors not measured in the studies presented in Table 1 than to the type of surgery (ie, nerve-sparing or non-nerve-sparing). Preservation of the structural and functional integrity of the external sphincter is considered essential for the maintenance of continence.21 Another possible cause of post-prostatectomy incontinence includes damage to nerve fibers near the prostatic apex, resulting in impaired neural control of the sphincter.22 Maximal urethral closure pressure and pressure transmission are altered with radical prostatectomy; as these parameters improve, continence is restored.23
Although increased age appears to be a risk factor for incontinence, no large studies have been conducted controlling for other medical comorbidities, such as size, stage, and location of tumor, and other factors, that may confound study findings.
No clearly defined set of risk factors exists for incontinence after surgery, yet many men immediately experience post-surgery incontinence. An awareness of emotional and educational needs is important to the recovery process. These patients are dealing with both a cancer diagnosis and unpleasant physical symptoms. Many men state that they felt unprepared for incontinence post surgery.24 In a mailed survey to men post prostatectomy, almost 30% of the respondents said they did not receive adequate information about urinary incontinence as a possible outcome to surgery.25
Incontinence represents a profound loss of control and sense of competency as an adult. The stigma of incontinence also influences a man’s sense of personal and social integrity.26 One study found that men would be more willing to accept impotence as a consequence of surgery rather than incontinence.27 The impact of urinary incontinence on a man’s quality of life and sense of personhood and manhood is only just now receiving attention from clinicians and researchers.
In his elegant and moving memoir, Man to Man, Michael Korda28 revealed the depth of humiliation and anger he felt from being incontinent and from not receiving clear-cut advice on managing incontinence and restoring continence. After urine had leaked from a leg bag, Korda said, “My anger was uncontrollable, a kind of pointless, self-directed rage, rage at my helplessness… and at what had become of me.” Korda discovered on his own that certain yoga exercises helped strengthen his pelvic floor. Clinicians can help men simply by listening to them, answering their questions, finding out what works for them, directing them to prostate cancer support groups such as Us TOO! International, and providing them with self-care management strategies.
Simple instructions such as bringing a disposable absorbent pad to the office visit when the Foley catheter is removed can help men avoid an embarrassing incontinent episode. Other self-care strategies include avoiding caffeinated beverages, reducing excessive fluid intake, and performing pelvic muscle exercises.20 Pelvic muscle exercises with biofeedback at an office visit once a week and performing 90 contractions per day between visits were found to be effective in reducing both the duration and degree of incontinence over the first year after prostatectomy.29 Having men employ self-care strategies also may bolster their sense of control.
Home visits and telephone calls between visits have been reported as effective in relieving some men’s concerns about incontinence.24 Because the diagnosis of prostate cancer has a profound emotional impact, a clinician should not automatically assume that pre-operative education is both comprehensive and sufficient. Men need on-going emotional support and information about treating incontinence and containing urine loss. Web-based information about urinary continence is available.30 Typically, discussion of invasive treatment for incontinence such as an artificial sphincter or collagen injections is deferred until 1 year after surgery; therefore, men may need help with containment and leakage management issues, including the selection of use of penile clamps, condom catheters, and absorbent products.
The prevalence data about urinary incontinence after prostatectomy reveals that it is a prevalent condition that diminishes over time from surgery in many men. Older men may be at greater risk for becoming incontinent after surgery. However, little is known about racial and ethnic differences in incidence. Studies using standardized definition and methodologies that control for pre-existing incontinence and other comorbidities with a diverse racial and ethnic population still need to be conducted. Because incontinence may already be a pre-existing condition in some men, clinicians must take into account the underlying mechanism (eg, detrusor dysfunction, sphincter deficiency) when offering treatment and management options.
The epidemiology of urinary incontinence provides valuable information for clinicians and researchers to plan educational resources for men both before and after surgery. Factual information augmented by emotional support needs to be relayed to men both before the surgery and on an on-going basis during their recovery.