In the United States, urinary incontinence (UI) has been defined by the Agency for Health Care Policy and Research/ Agency for Healthcare Research and Quality as "involuntary loss of urine sufficient to be a problem" (Fanti et al., 1996, p. 130). On a global level, the International Continence Society's definition of UI as a "social or hygienic problem..." (Bates et al., 1976) is most often cited in quantitative studies examining the effect of UI on healthrelated quality of life (HRQoL). Regardless of the source, both definitions recognize UI as more than just a physiologic loss of urine. Emotional distress is also a significant issue for individuals experiencing incontinence and thus, can have a significant effect on HRQoL.
For women, UI and other related lower urinary tract symptoms (LUTS) (e.g., nocturia, urinary urgency, frequency) are common. Urinary incontinence affects more than 17 million adults in the United States. At least 85% of those affected are women (American Urological Association, 1997; National Association for Continence, 1998). Prevalence rates for UI in women vary widely because of differences in definitions, study characteristics, and target populations (Moller, Lose, & Jorgensen, 2000; Thorn, 1998). Among elderly community-dwelling women, the prevalence is 30% to 50% for any type of UI and as much as 14% for daily UI (Diokno, Brock, Brown, & Herzog, 1986).
Although the absolute prevalence of female UI is of concern, it is the prevalence of UI affecting daily life that determines the need for health services (Swithinbank et al., 1999). For example, although the relationship between UI and psychological distress is unclear, it is possible that women with UI are more likely to suffer from concomitant psychological distress than women who are not incontinent (Meade-D'Alisera, Merriweather, Wentland, Fatal, & Ghafar, 2001; Melville et al., 2002). For older individuals, it may be that functional status decline mediates the relationship between UI and psychological distress (Bogner et al., 2002). Moreover, women are likely to base decisions to seek professional UI evaluation or treatment on the severity of their condition and the effect of UI on day-to-day function. Some women seek professional UI evaluation and treatment because of "troublesome" leakage (Costa & Mottet, 1997). Others delay treatment because of lack of information, embarrassment, or reluctance to discuss their UI with others (Norton, MacDonald, Sedgwick, & Stanton, 1988).
THE IMPACT OF URINARY INCONTINENCE (Ul) ON HEALTH RELATED QUALITY OF LIFE (HRQoL)
As a result, some women manage UI by suffering in silence or by devising elaborate measures to conceal their UI from family members, friends, and health care providers (Foster, 1988; Manley, 1984). Regardless of whether women seek professional treatment or make decisions to manage their UI without professional input, many aspects of HRQoL are affected by UI (Sidebar). Because UI affects many facets of an individual's Ufe, it is essential for clinicians and researchers to adequately evaluate the effect of UI, and its treatments, on HRQoL (Thorn, 2000).
Health-related quality of life is an abstract, subjective, multidimensional concept. It has no universal definition, and includes an "individual's evaluation or judgment about subjective well-being and objective attributes of functioning" (Wyman, 1998, p. 779). Although the definitions of HRQoL vary, experts agree the concept includes four fundamental dimensions (Wyman, 1998):
* Mental or psychological.
* Social health.
* Global perceptions of function and well-being.
Despite valid and reliable generic and condition-specific tools for measuring HRQoL, debate continues about the effect of UI on HRQoL, how best to measure and interpret data, and how to extend the findings of HRQoL research to clinical practice (Burgio, Locher, Roth, OC Goode, 2001; Dugan et al., 1998; Harris, 1999).
This article addresses methods for, and the importance of, measuring the effect of UI on HRQoL among elderly women. Methods for evaluating HRQoL are discussed and several methods are recommended for clinical practice. Clinical and research implications are included because gerontological nurses have a key role in understanding and evaluating the effect of UI on HRQoL.
METHODS FOR EVALUATING HRQoL
A variety of methods have been used to examine the effect of UI on HRQoL (Table). One quantitative approach is using visual analog scales (VAS) to estimate individuals' subjective perceptions of UI (Brown et al., 1998; Macaulay, Stern, Holmes, & Stanton, 1987; Simeonova, Milsom, Kullendorff, Molander, & Bengtsson, 1999; Vinsnes & Hunskaar, 1991). Generally, VAS involve a measured line representing the continuum between two extremes such as "healthy" or "no problem" (lek of scale) and "ill" or "can't imagine anything worse" (right of scale). Participants estimate their feelings by making a mark on the line, and values are obtained by measuring the distance from a pre-determined position to the participant's mark.
Most often, either generic or condition-specific questionnaires are used. Both approaches have strengths and weaknesses. In general, generic HRQoL questionnaires assess wellbeing, and can be used to compare across groups and populations, but may be less sensitive to the characteristics of UI and its effect. Conditionspecific instruments more specifically address UI issues and are more sensitive to changes over time, but are less well-suited for comparison among a general population or other groups (Costa & Mottet, 1997; Dugan et al., 1998; Shumaker, Wyman, Uebersax, McClish, & Fand, 1994).
Generic instruments used in studies of UI in women include the Sickness Impact Profile (SIP), the Nottingham Health Profile Questionnaire (NHPQ), and the Short-Form 36 Health Status Questionnaire (SF36). The SIP is a standardized questionnaire consisting of 136 statements measuring sickness-related dysfunction in everyday life (Hunskaar & Vinsnes, 1991). The statements are further divided into 12 dimensions (e.g., physical dimension, psychosocial dimension) and categories (e.g., sleep and rest, home management, work, recreation) describing various aspects of normal daily life and activities. As a measure of general health status, the SIP is valid, sensitive, and reliable (Bergner, Bobbitt, Carter, & Gilson, 1981). Although the SIP does not provide a specific measure for UI, general responses seem to be related to UI problems, thus it may be useful as a measure of HRQoL in older women (Hunskaar & Vinsnes, 1991). However, the SIP is quite long and may be unwieldy in some research projects and in clinical practice.
The NHPQ was originally used in patients with osteoarthritis and has been evaluated for reliability and validity with a variety of other populations of older individuals in the United Kingdom (U.K.) and Sweden (Borgquist, Nilsson, Lindelow, Wiklund, & Thorngren, 1992; Hunt et al., 1980; Wiklund et al., 1992). It includes 38 generic quality of life questions covering topics such as sleep, pain, energy, physical mobility, social isolation, and emotional reaction. The NHPQ is shorter than the SIP, and tends to focus on the more severe end of ill health (Swithinbank & Abrams, 1999). The NHPQ has been used to examine quality of life in older women with UI (Grimby, Milsom, Molander, Wiklund, & Ekelund, 1993), but may not be appropriate for community-dwelling, healthy women.
The SF-36 is a self-administered, standardized, quantitative measure of HRQoL (Brazier et al., 1992). It takes approximately 5 minutes to complete and includes 36 items covering eight dimensions of general health, including functional status, well being, and overall evaluation of health. For each dimension, item scores are coded, summed, and transformed to a scale of 0 (worst health) to 100 (best health).
Brazier et al. (1992) tested the SF36 for reliability and validity in a sample of 1,980 primarily White, middleclass individuals (ages 16 to 74) randomly selected from a general practice in the U.K. Overall Cronbach's alpha was greater than .85. Construct validity was acceptable in terms of the instrument's ability to be used to distinguish between groups with expected health differences (Brazier et al., 1992). In this population, the SF-36 was easy to use, acceptable for patients, and - in comparison to the NHPQ - suitable for a general population of relatively healthy individuals. As a generic tool, the SF-36 may be more appropriate than the NHPQ for quantifying the effect of UI (in research or clinical practice) among community-dwelling older women.
Two early publications describe the initial factor analysis for the Incontinence Stress Index (Yu, 1987) and preliminary results of a condition-specific telephone questionnaire for assessing quality of life in noninstitutionalized, incontinent elderly individuals (Reilly & Clark, 1990). Although both of these instruments showed promise in initial testing, neither has been used in recent studies and, therefore, are not described further in this article.
METHODS USED TO STUDY THE EFFECTS OF URINARY INCONTINENCE ON HEALTH-RELATED QUALITY OF LIFE
In 1982, Norton was one of the first investigators to measure the effect of UI. As a pilot study, 60 women attending a urodynamic clinic were sent one of two questionnaires. Group 1 (n = 30) received an unstructured questionnaire asking about duration, frequency, and use of protective pads, plus the question: "Please list all the ways in which urinary leakage has affected your life." Group 2 (n - 30) received a more structured questionnaire listing a wide range of potentially affected areas, such as social life, job, and family relationships. Using pilot study results, a final questionnaire was designed and tested on a second sample of 55 women with UI (mean age = 50). The final version of Norton's instrument included seven prehrninary questions about duration, frequency, and severity of leakage; followed by 10 questions about the effects of UI on the individual. Although Norton's instrument has not undergone further psychometric testing, her early efforts are widely recognized as a significant contribution to the field.
The Incontinence Impact Questionnaire (HQ) was developed from Norton's (1982) earlier work (Swithinbank & Abrams, 1999). Further work on the HQ led to the development of a complimentary instrument - the Urogenital Distress Inventory (UDI). The UDI and HQ are two of the most commonly used condition-specific instruments available for assessing the effect of UI on HRQoL (Shumaker et al., 1994). The UDI is a self-administered questionnaire consisting of 19 items associated with lower urinary tract dysfunction. Three subscales within the UDI measure irritative symptoms, obstructive discomfort, and stress symptoms. The HQ is also self-administered, and consists of 30 items that measure the effect of UI on activities, relationships, and feelings; subscales of the IIQ include physical activity, travel, social relationships, and emotional health. Both instruments use a 4point Likert-type scale (i.e., O = not at all, 3 = great) to record responses.
THE INCONTINENCE IMPACT QUESTIONNAIRE-SHORT FORM (IIQ-7) AND THE UROGENITAL DISTRESS INVENTORY-SHORT FORM (UPI-6)*†
Reliability and validity have been established for the UDI and IIQ in a population of 162 communitydwelling women (96% White, mean age = 62) with UI (Shumaker et al., 1994). Cronbach's alpha for the UDI subscales was reported as .70 (irritative symptoms), .77 (obstructive discomfort), and .48 (stress symptoms). Alpha reliabilities for the IIQ subscales were .87 (physical activity), .87 (travel), .90 (social relationships), and .90 (emotional). The IIQ and UDI are significandy responsive to changes in UI during a 3-month period (p < .0001) (Shumaker et al., 1994). Moreover, both instruments correlate to a moderate degree (37) with the SF-36. This is appropriate because it indicates that the HQ and UDI measure something beyond general health status.
Short forms for the HQ and UDI (eg., IIQ-7, UDI-6) have been validated for use with middle-aged women and are useful when time is limited, for frequent assessment, and when one desires to minirnize respondent burden (Uebersax et al., 1994). The IIQ-7 is used to assess life impact, whereas the UDI-6 evaluates symptom distress (Sidebar). In combination, the IIQ and UDI (short and long forms) are likely to be superior to generic measures of HRQoL, and provide detailed information regarding the effect of stress and urge UI on women (Lübeck, Prebil, Peeples, & Brown, 1999; Shumaker et al., 1994).
Because urge UI and overactive bladder (OAB) seem to affect HRQoL in different ways than other types of UI, urge UI-specific quality of life instruments recendy have been introduced (Hagglund, WalkerEngstrom, Larsson, & Leppert, 2001; Kelleher, Cardozo, & Toozs-Hobson, 1995; Lenderking, Nackley, Anderson, & Testa, 19%; Liberman et aL, 2001). Brown, Posner, and Stewart (1999) modified the UDI and IIQ by adding questions and creating new domains based on focus group input, expert clinical opinion, and literature review. Two instruments, the UrgeHQ and the Urge-UDI, have been validated in a racially, ethnically, economically, and age-diverse population of community-dweiling women. AJl domains have adequate reliability (Cronbach's alpha = .74 to .95) and test-retest reliability (Brown et al., 1999). DuBeau, Kiely, and Resnick (1999) developed and evaluated the Urge Impact Scale (URIS), a 24-item, self -report questionnaire, in 48 community-dwelling men and women older than 60. Cronbach's alpha was .94, test-retest reliability was good, and factor analysis revealed three components:
* Psychological burden.
* Perception of personal control.
While the URIS may be particularly well-suited for capturing the multifactoral nature of urge UI (DuBeau et al., 1999), some experts fear that urge-specific questionnaires may be too specific and, therefore, miss essential elements - particularly for women with mixed symptoms (Kelleher et al, 1995).
Three additional condition-specific instruments include the Incontinence Quality of Life Instrument (I-QOL) (Patrick et al., 1999), the Bristol Female LUTS questionnaire (Jackson et al., 1996), and the King's Health Questionnaire (Kelleher, Cardozo, Khullar, & Salvatore, 1997). The IQOL contains 22 items, each with a 5-point, Likert-type response scale and yields both a single total score and three sub-scale scores (Patrick et al., 1999b; Wagner, Patrick, Bavendam, Martin, & Buesching, 19%):
* Avoidance and limiting behaviors.
* Psychosocial impacts.
* Social embarrassment.
Individual responses are summed and averaged, then transformed into a 0 to 100 scale for ease of interpretation. Higher scores indicate a higher UI-specific quality of life. The IQOL is self-administered and takes approximately 5 minutes to complete (Patrick, Martin, & Buesching, 2000). The instrument has been used in several clinical trials, and is included in a Web site (http://www.mybladder. com) for assisting individuals with UI to monitor treatment progress. Thus, the I-QOL can be used in research and clinical practice. An additional advantage of the I-QOL is its translation into more than 20 languages. Results of psychometric testing are available for the French, German, Spanish, Swedish, and English versions of the I-QOL (Patrick et al., 1999a).
The Bristol Female LUTS questionnaire quantifies female LUTS and measures their impact on quality of life (Jackson et al., 1996). After modification from a male version, consultation with clinicians and patients, and an extensive literature review, the final instrument contains 12 items addressing LUTS, 8 addressing UI, 9 addressing quality of life in the form of "bother" questions, and 4 related to sexual function. The "bother" questions contain a 4-point, Likert-type response (i.e., not a problem, a bit of a problem, quite a problem, a serious problem). Other questions contain a 5-point, Likert-type response. The instrument is self-administered, and takes 10 to 15 minutes to complete.
Reliability and validity of the Bristol Female LUTS was initially tested in a group of 85 women (mean age = 51; age range = 24 to 80) referred for urodynamic testing (Jackson et al., 1996). In this population, the instrument has been shown to have appropriate content, construct, and criterion validity. Testretest reliability is acceptable, with an overall Spearman rank correlation coefficient for scores between tests of .86 (p < .001; 95% confidence interval, .76 to .93). Cronbach's alpha for the overall instrument is .78.
The King's Health Questionnaire was designed to measure the quality of life of women with UI (Kelleher et al., 1997). Six pilot versions of the questionnaire were tested. The final version includes 21 questions addressing limitations (e.g., role, physical, social, personal), emotional problems, sleep and energy disturbance, and severity of UI. Scores range between 0 to 100, with higher scores indicating a higher quality of life. Initial reliability and validity testing was accomplished by asking women referred for urodynamic testing to complete the questionnaire. Completed questionnaires were returned by 285 women (97% response rate). Criterion validity was confirmed against the U.K. version of the SF-36. Although Spearman's correlation coefficients for the two common domains between the SF-36 and the King's Health Questionnaire were high, the two instruments have major differences - thus illustrating the difficulty in comparing results obtained with generic and condition-specific instruments. Test-retest analysis was excellent, and internal consistency for each of the domains ranged from a Cronbach's alpha of .78 to .88 (Kelleher et al., 1997). According to the authors, the questionnaire is easy to complete and, therefore, should be quite useful for both clinical practice and research with English-speaking participants (Kelleher et al., 1997).
Valid and reliable generic and condition-specific questionnaires are available to measure the effect of UI on HRQoL. In combination with other commonly employed quantitative measures of UI severity (e.g., bladder diaries, urodynamic data), information essential for evaluation, treatment, and comparison of women with UI can be obtained. However, because the available instruments and the population of women with UI are quite heterogeneous, choosing the "best" tool is difficult. Thus, Dugan et al. (1998) recommend clinicians and researchers be careful to consider a priori the purpose for which they are obtaining qualityof-life data. In some situations, the best approach may be to use a combination of instruments to obtain optimal information.
Quantitative instruments can be extremely useful in research and clinical practice. Their use is limited however, because the information cannot fully represent the experience of being incontinent, or examine contextual factors that may affect HRQoL. In clinical practice, gerontological nurses can use open-ended questions (e.g., "How much does UI 'bother' you?" or "How does your UI affect your day-to-day activities?") as an alternate or additional method for examining the effect of UI on daily life.
In research, qualitative methods for evaluating the effect of UI include focus groups and in-depth interviews. For example, Mitteness (1987) observed and interviewed 30 incontinent older adults (mean age = 74) living in subsidized, senior housing as a beginning step in understanding the effect of UI on their lives. The effect of UI on these individuals translated into a variety of management strategies. Psychological strategies included keeping the incontinence secret, thereby miiiimizing negative feelings about oneself and avoiding some of the stigma attached to UI. For example, individuals possessing cognitive, social, and economic resources went to "heroic" (Mitteness, p. 190) lengths to keep their UI a secret - such as doing heavy amounts of laundry, planning time very carefully to avoid accidents, and developing cognitive maps of the community to minimize distances from toilet facilities. Individuals who were less resourceful maintained self-esteem at a greater cost to their quality of life, primarily by engaging in significant social isolation.
In another study, in-depth interviews and observations of six elderly women (i.e., older than 65) identified individual reactions to being incontinent (Bjurbrant Birgersson, Hammar, Widerfors, Hallberg, & Athlin, 1993). Data revealed that UI was considered a stigmatized condition, and these women felt in a state of "continuous vulnerability" (p. 167). Moreover, how the women felt about themselves depended on their own basic view of themselves and on their strategies for controlling their UI. Thus, self-esteem was dependent on how their UI was "handled." For example, if women felt their UI was handled in a "bad" way (either by nursing staff, or by the women themselves), feelings of shame, guilt, dependency, insecurity, and discomfort were identified. On the other hand, if UI was handled in a "good" way, feelings of guilt and shame were absent, and feelings associated with UI were described as independent, secure, and comfortable.
Although HRQoL was never directly mentioned in either study, both demonstrate the significant costs associated with UI and highlight the importance of:
* Allowing individuals to express their own ideas related to the meaning of UI.
* Inquiry related to women's adaptive strategies.
* Health care focused on individual reactions to UI.
More recently, Brown et al. (1998) used a combination of qualitative and quantitative methods to examine the effect of UI on 65 racially diverse, community-dwelling women older than age 35 (mean age = 62) with urge UI. Participants completed questionnaires assessing demographics and UI type, severity, and related symptoms. Two self-report VAS were used to measure the effect of UI on daily activities and feelings. Participants also attended focus groups in which trained moderators used 1 1 open-ended questions to identify aspects of HRQoL affected by UI. Focus groups identified three broad areas affected by UI:
* Feelings (eg., feeling like a child).
* Activities (e.g., limiting or giving up activities).
* Relationships (e.g., affecting sex life or dating).
The overall effect of UI on quality of life correlated with urinary frequency, presence of nocturia, and pad use (ß = .02 to 0.32, ? < .05).
IMPLICATIONS FOR PRACTICE, RESEARCH, AND CONCLUSIONS
For many women, UI is distressing and has a negative effect on HRQoL. Gerontological nurses are in ideal positions to inquire about UI during regularly scheduled wellhealth visits, monthly evaluations in long-term care settings, or during other clinical encounters with older women. In addition, VAS, generic, and condition-specific instruments for quantifying the effect of UI on HRQoL are available, and should be used as components of UI assessment and as tools for evaluating treatment outcomes.
Researchers are increasingly aware of the importance of identifying UI and, in particular, UI effecting HRQoL (Swithinbank & Abrams, 1999). However, despite a fairly large amount of data, few researchers have acknowledged whether they have extended their findings into everyday clinical practice (Harris, 1999).
One of the most disturbing findings is that, despite identification of the negative effect of UI on HRQoL, many women do not seek care. Thus, a continued need exists to further differentiate the factors affecting health-seeking behavior. Asking historical or research questions about how much UI "bothers" women (Moller et al., 2000; Robinson et al., 1998) may be one method of identifying women most likely to benefit from UI interventions.
Researchers and clinicians must recognize that women and their responses to UI are heterogeneous and that multiple techniques may be necessary to document the full range of responses to UI. For example, although it is generally assumed that cultural beliefs affect women's perceptions of their urinary symptoms, large, community-based studies and use of diverse populations in development of instruments and in intervention studies are minimal (Brown et aL, 1998; Kelleher et al, 1995; Ruff, van Rijswijk, & Okoli, 2002). To be useful in clinical practice, continued work is necessary regarding the longterm effects of specific UI interventions most likely to positively affect HRQoL for women with UI.
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THE IMPACT OF URINARY INCONTINENCE (Ul) ON HEALTH RELATED QUALITY OF LIFE (HRQoL)
METHODS USED TO STUDY THE EFFECTS OF URINARY INCONTINENCE ON HEALTH-RELATED QUALITY OF LIFE
THE INCONTINENCE IMPACT QUESTIONNAIRE-SHORT FORM (IIQ-7) AND THE UROGENITAL DISTRESS INVENTORY-SHORT FORM (UPI-6)*†