There is an increasing prevalence of bladder control problems as the American population ages. Simultaneously, there is increasing attention to maintaining an active, fit lifestyle. These two epidemiologic factors ensure that obstetrician-gynecologists will be providing care to women with urinary incontinence. Urinary incontinence is a common disorder affecting millions of American women. Although not painful or life-threatening, urinary incontinence has an insidious way of affecting quality of life. Physicians who identify and treat urinary incontinence may be able to limit these deleterious effects for their patients.

There are several causes of urinary incontinence. The most common forms are stress incontinence, wherein urine loss occurs simultaneous with increases in intra-abdominal pressure. For many women with stress incontinence, urine loss occurs during coughing, laughing, or sneezing. Activity-related loss may occur during exercise or during household or family activities such as lifting a small child. Reduction of such activities clearly has the potential to affect the quality of life in a rather insidious manner. It is common to hear patients report reduction of previously pleasurable activities, such as exercise.¹

Another common form of urinary incontinence is caused by detrusor overactivity. This is essentially untimely contractions of the bladder resulting in urine loss. Typically, this is associated with an overwhelming urge to urinate that cannot be suppressed or delayed. The loss of urine is unpredictable, and the volume lost tends to be moderate or large, simulating voluntary voiding. Combined forms of detrusor overactivity and stress incontinence are common, existing in an estimated one third of women with urinary incontinence.

The evaluation and treatment of urinary incontinence is reviewed elsewhere in this library. This chapter acquaints the physician with the quality of life issues that are influenced by urinary incontinence.

Treatment of urinary incontinence includes options such as pelvic floor exercises, vaginal devices, oral medications, periurethral bulking agents, Botox injections into the bladder, and surgery. Incontinence surgery, in particular, may have “side effects” that alter quality of life for recipients. Such effects include new-onset lower urinary tract dysfunction and prolapse. It is quite common for normal voiding to be altered. Such alterations may be minor, such as a change in the direction or force of the urinary stream. Alternatively, major changes may occur, including a need to use self-catheterization for a prolonged postoperative period. It is also well known that pelvic floor disorders rarely occur in isolation. A patient who undergoes surgical treatment of stress incontinence is more likely to experience symptomatic prolapse in the future.

Urinary incontinence may also disturb sleep, which further exacerbates daily functions. In the elderly population, this may coexist with a primary disturbance of the sleep cycle. Furthermore, the physiologic increase of urine production in the supine position challenges the already borderline lower urinary tract to store additional urine volume.

Urinary incontinence may also affect sexual functioning. One study reported that 43% of study participants with urinary incontinence felt that their urinary disorder had adversely affected sexual relations.² Several studies have documented that urinary incontinence has a deleterious effect on sexual functioning, regardless of whether urine loss occurs as part of sexual activity.^{2, 3, 4, 5} Sexual problems include decreased frequency of coital activity and decreased libido. Urine loss during sexual activity may occur during arousal, penetration, orgasm, or resolution.⁵ Urogenital procedures may alter sexual function, with both improvement and deterioration reported.⁶

Additional research has also looked at the possible link between depression and urinary incontinence.^{7, 8, 9, 10} Urinary incontinence and major depression disporportionately affect women and both are associated with significant social stigma. Comorbid depression may compound a woman's sense of embarrassment from incontinence and lead to increased shame and isolation.¹¹

There are several common myths associated with urinary incontinence. Many women believe that loss of bladder control is normal following childbirth. Goldstein and colleagues studied 119 women, aged 55–99, and reported that 27% of these incontinent women believed that incontinence was normal following childbirth.¹² Although little is known about the natural history of urinary incontinence, there is a strong observational relationship with vaginal childbirth; however, it is clear that not all women experience urinary incontinence following vaginal delivery. Studies have shown that women who have had children leak more than women who have never had children. One study showed that approximatley one third of women developed stress incontinence during their first pregnancy with an additional 7% noting incontinence after delivery. At 1 year, only 3% continued to have stress incontinence symptoms.¹³

 Although it is true that the incidence and prevalence of urinary incontinence increase with age, the majority of elderly women have sufficient bladder control. This is more often noted in debilitated and institutionalized women in the setting of advanced dementia from Alzheimer's disease and stroke.^{14, 15, 16} 

Finally, there is a significant lack of knowledge regarding the evaluation and treatment options for urinary incontinence. This occurs in both lay and professional populations.¹⁷ Goldstein and colleagues reported that of the incontinent participants in their study, 40% of patients were not given helpful advice regarding their incontinence. Patients may also be reluctant to report loss of bladder control if they believe that they will be required to have surgery or if all treatment options are ineffective.

The social stigma that accompanies loss of bladder control is a barrier to reporting urinary incontinence.^{18, 19} It is probable that this stigma is related to the fact that continence is a learned behavior. Incontinence is then seen as a retreat from the mastery of bowel and bladder function. The terminology used by patients to describe incontinence varies greatly but rarely mimics medical terminology. Patients may describe “accidents”, “leaking”, or “control of water”. The term “incontinent” often seems too strong for patients—perhaps suggesting that a urinary control problem is a serious disease with little or no hope of treatment. Moreover, it is not surprising that lay people's knowledge of normal continence and the etiology of incontinence is limited. This is consistent with a patient's common description of the problem—“I just go a lot”. This type of comment is typically a combination of resignation to the condition and hope that there is something that can help.

Recent psychologic studies have suggested that young or middle-aged women with urinary incontinence find it difficult to focus on and rationally address this disorder. It is perceived as a problem affronting one's personal control, and this may explain patients with objective incontinence who insist that they have “no such problem”. Because this disorder may evoke partial or complete denial, this problem may be subordinated in favor of other healthcare priorities.²⁰

Herzog and associates reported psychologic distress in 747 community-dwelling women over age 60.²¹ The presence of urinary incontinence was weakly related to depression, negative affect, and low life satisfaction. However, this finding is somewhat explained by the poorer general health of these women.

Many women manage the symptoms of urinary incontinence without professional diagnosis and treatment. Common self-management tools include alterations in toileting, alterations in amount of fluid intake (both increases and decreases), alterations in type of fluid intake (typically decreased caffeine), protective absorbent materials, and increased hygienic measures.²² Furthermore, patients understandably avoid activities that cause leakage. Difficult social situations are also avoided. These situations include events with restricted toilet access, such as major cultural or sports events. Also, the multiple interruptions for necessary toileting may limit social events such as dinners or movies with family and friends. In extreme situations, patients have reported anger and hostility from family members who believe that the lack of bladder control is either volitional or simply inconsiderate.

Many women attempt to cope with their urinary incontinence as best as possible. These coping strategies vary widely, and many patients use more than a single strategy. Options include denial, minimization, isolation/secrecy, and avoidance of the activity or situation risky for loss of urine. Some patients have adopted major alterations without consciously recognizing the reasons for such changes. Such a patient may report “minor leakage” but may unconsciously void every 30 minutes to avoid urine loss. Coping ability may increase with aging, as suggested by Thomas and colleagues.²³ This may be attributable to a general reduction in activity by elderly people; however, Thomas also reported some unusual strategies resulting from misinformation. One woman reported drinking pickle juice, believing that it was a bladder “astringent” and that ingestion would help manage her urinary incontinence.

The responses of the public to uncontrolled urine loss have not been well studied; however, it is likely that urinary incontinence jeopardizes independent living in certain circumstances. Lipman and associates found that landlords of rental units would evict or would not rent rooms to incontinent elderly people. In elderly patients, urinary incontinence may accelerate allegations of mental decompensation, resulting in social or emotional isolation.²⁴ Daytime urinary incontinence in elderly patients is variably tolerated by caregivers. Alternatively, nocturnal urinary frequency that disrupts the caregiver's sleep is poorly tolerated, further straining relationships and accelerating isolation. This may result in premature nursing home placement.

Patient reports of urinary incontinence are not always heeded by the healthcare team. The concept of urinary incontinence not being viewed as a valid medical disorder is elucidated in both the underreporting of symptoms by patients and lack of recognition by physicians. Several disturbing reports suggest that a significant minority of incontinent patients have reported their condition to a healthcare professional only to be told that nothing can be done or that incontinence normally occurs with aging.^{25, 26} It is not uncommon for healthcare professionals to fail to recognize the presence of incontinence in elderly patients.²⁷ Additionally, healthcare professionals need education to manage the psychosocial disruption related to incontinence.²⁸

As medical skills and technology improve, medical consumers increasingly expect improvement in quality of life. In bygone eras, prolonged survival or relief of pain was desired, without regard to the physiologic or psychosocial costs. More recently, however, there has been a shift toward assessing the overall effects of health problems as well as the effects of the treatment. For example, in cancer therapy, the increased survival is being increasingly viewed against a background of the “quality” of the prolonged survival. Living an additional year while suffering severe side effects from cancer treatment may not necessarily represent an “advance” in treatment for such a patient. Because of the life-threatening nature of the disease, cancer researchers have pioneered the quality of life investigations. Other disciplines have begun to assess their therapies in this light, as well.^{29, 30, 31} The assessment of quality of life issues in urinary incontinence is a promising but relatively new area of investigation.

Quality of life research is commonly performed by questionnaires, with some augmentation by personal interview. The use of validated instruments is critical to reasonable assessment of data.³² Most of the current urinary incontinence instruments are modified from existing quality of life instruments that were developed for either general purposes or other specific orders.³³ The general format of such instruments is groups of questions that are divided into “domains”. Such a format acknowledges that health-related quality of life has a multidimensional nature. Each domain represents an area believed to have an impact on the overall quality of life. Instruments vary in the chosen domains as well as the specific questions within each domain. Common domains include emotional/social, functional, mental/psychologic, and physical. Additional domains may include healthcare team relationships and disorder-specific items.

The emotional/social domain typically includes specific questions regarding relationships with family and friends, intimacy, and sexuality. Functional domain issues usually include questions related to role performance and the activities of daily living. This area also includes questions regarding optional recreational activities, such as exercise. Mental/psychologic domain questions include items regarding emotional distress and a global sense of well-being. Finally, the questions in the physical domain focus on symptoms and, importantly, side effects of therapy.

Disorder-specific instruments may have additional items that assess certain symptoms in more detail. Also, some instruments assess the relationship between the patient and the healthcare team.

There is limited ability of a healthcare provider to predict the quality of life of an individual incontinent woman. The majority of reports suggest that urinary incontinence has an impact; however, the extent of this impact has yet to be fully characterized. Rare reports suggest that urinary incontinence exists in the background of serious psychologic perturbations.

In a study of Swedish women aged 65–84, Grimby and colleagues assessed quality of life using the Nottingham Health Profile Questionnaire. This instrument is a general quality of life instrument that has been used to study elderly patients in Great Britain and Sweden. The women in this study were divided into continent and incontinent groups, with the urinary incontinence being objectively demonstrated. This study suggested that women with any form of urinary incontinence experience more social isolation than age-matched continent women. Those women with either urge or mixed incontinence also experience more emotional disturbances than the continent control group.³⁴

Wyman and associates reported the psychosocial impact of urinary incontinence in women who were categorized urodynamically.³⁵ Their study of community-dwelling women over age 55 explored the complex relationships between the patient's perceptions and current objective assessments. This preliminary study tested a highly selected, educated volunteer population and suggested that the correlation between psychosocial impact and two commonly used objective assessments (pad loss and diary) was modest. This study underlines the variability in the impact of urinary incontinence and the difficulty of relating conventional objective measurements of urine loss to the effect on quality of life issues for an individual patient.

Hunskaar and Visnes reported an adverse effect on quality of life in Norwegian community-dwelling women.³⁶ This appeared to be more pronounced in women with urge incontinence. Also, younger women were more affected than older counterparts.

Macaulay and associates reported using a standardized questionnaire to assess 211 women undergoing urodynamic testing for evaluation of urinary incontinence.³⁷ The Crown-Crisp Experiential Index was used to assess the personality traits. The Spielberger State/Trait Anxiety Inventory was used to assess anxiety, and the Wakefield Self-Assessment Inventory was used to assess depression. These investigators found that patients with stress incontinence overall had scores within the normal range; however, patients with detrusor overactivity had abnormalities that seemed consistent with a lack of self-esteem. This study emphasizes the need to subcategorize the urodynamic subtypes of incontinence prior to making sweeping comments regarding the presumed effects on global quality of life.

In contrast to the previously mentioned studies, Lagro-Janssen and colleagues studied incontinent women in a general population who were studied urodynamically.³⁸ They reported that there was no significant difference in psychologic characteristics between patients with urge incontinence and those with other forms of incontinence.

It remains unclear what the precise role of incontinence etiology is in causing psychosocial disturbances; however, it seems logical that the urodynamic subtype of incontinence is an important variable in assessing global well-being. Yet, this is only one of a great many variables that can affect health-related quality of life. There appears to be an important effect of age. Sandvik and associates reported interview data obtained from 187 Norwegian women with urinary incontinence.³⁹ Not surprisingly, younger women experienced more distress than older women, and self-reports of incontinence severity were associated with more mental distress and practical inconvenience.

Clearly, there are multiple facets of urinary incontinence that have the potential to affect health-related quality of life, because both evaluation and treatment may alter quality of life. The disorder may affect emotional and social facets and may also have an impact on activities of daily living and role fulfillment. Given the growing evidence of psychosocial impact, physicians caring for women with urinary incontinence should become familiar with health-related quality of life assessments.