Quality of Life of Older Adults with Urinary Incontinence

Health-related quality of life is now recognized as an important patient outcome in response to a disease, treatment, or procedure. The term health-related quality of life (HRQL) refers to a multidimensional construct involving the individual's evaluation or judgment about subjective well-being and objective attributes of functioning. Although there are varying definitions of HRQL, a group of international experts agreed that the fundamental dimensions of HRQL are physical, mental/psychological, and social health, as well as global perceptions of function and well-being.1 Other dimensions of HRQL might also be important, depending on the purpose of an investigation and the specific health condition being studied. These dimensions include cognitive or neuropsychologic functioning, sexual functioning and intimacy, personal productivity, symptoms, pain, energy/vitality, sleep, and self-esteem. Urinary incontinence and its associated symptoms can have a significant impact on the HRQL of older adults. Evidence suggests that incontinence can affect HRQL in diverse and far-reaching ways and that there is considerable variability among individuals in their perceptions and responses to urinary symptoms.2 In addition, there are differences in HRQL impairment, depending on the type of incontinence, the age, and possibly the gender of the patient.2 Surprisingly, research has not consistently documented a strong relationship between incontinence severity (typically measured in the number of incontinent episodes or grams of fluid lost on a pad test) and HRQL impact. The explanation for the lack of a strong relationship between these two types of patient outcome measures is unclear. In this issue are two reports that examine aspects of the HRQL of community-dwelling older adults with urinary incontinence. The reports approach the topic from different perspectives and research methodologies, yet each report makes an important contribution that furthers our understanding related to the impact of incontinence on one or more domains of quality of life. Catherine DuBeau and her colleagues3 present descriptions of the impact of urge incontinence in the lives of older women and men obtained through qualitative research methodologies. The ultimate goal of their work is to develop a HRQL instrument that has strong validity for use in urge incontinent older patients. These authors compared patient-defined areas of impact obtained through focus group interviews with provider/expert areas of impact obtained from the literature and included in published condition-specific quality of life instruments. DuBeau et al. also examined the patients'descriptions to identify the possible role of patients'explanatory style as a mediator of the impact of incontinence on HRQL. DuBeau et al.'s study represents the second generation of instrument development work in research on the HRQL of incontinent patients. She and her colleagues are to be commended for their sound approach to the development of a new condition-specific HRQL instrument. Because HRQL is, by definition, the patient's own perspectives on his/her functioning and well-being, the use of focus group and content analysis methodologies is appropriate. As a next step in establishing content validity, the authors could either take the items identified in the focus groups back to the participants or take them to a new group of older adults with urge incontinence for further validation. Another critical step, one which is usually skipped in HRQL instrument development, would be to have the participants evaluate the importance of each of the specified items in relation to the other items. This would help identify whether each item should be weighted equally or given a different value in calculating subscale scores. See also p 683 and p 693 One limitation in DuBeau et al.'s study was the use of a nonrepresentative sample, i.e., the sample was all white and predominantly of high socioeconomic status. Cultural and economic differences could affect perceptions of the impact of incontinence in participants'lives. Despite this limitation, the results from this study emphasize the differences between the way experts and patients view HRQL and provide new information on the impact of urge incontinence on older adults. More than half of the items identified by DuBeau and her colleagues were not described previously, which may be related to the different conceptual orientations of researchers about what constitutes HRQL versus what factors influence it. For example, DuBeau and her colleagues include a domain on coping. In some theoretical perspectives, this might be considered a personal trait that is not a characteristic of HRQL, whereas in others it might be viewed as a mediating variable of HRQL.4 Also, specific items identified — such as the inevitability of incontinence, that incontinence is a psychological not a physical problem, the association of incontinence with women's biology, and fear of aging — reflect an individual's knowledge, attitudes, and beliefs rather than HRQL. A significant finding in this study was the greater influence of urge incontinence on coping with embarrassment and the interruption of activities compared with the performance of activities, which is used typically in geriatric assessment models. A novel aspect of DuBeau et al.'s study was the examination of explanatory style, i.e., the habitual manner in which persons explain how and why uncontrollable adverse events such as illness occur to them, as a possible mediator of HRQL. Previous research suggests that explanatory style correlates with the range of responses of individuals to illnesses. It makes sense that explanatory style affects responses to incontinence. The authors'findings indicate an association between negative explanatory statements and HRQL items and suggest that there may be gender differences. However, the results on gender differences must be interpreted cautiously because of the small number of men in the sample. No consistent relationship was found between incontinence severity, as measured by the number of incontinent episodes on a voiding diary, and explanatory style. Theodore Johnson II and his colleagues5 conducted a secondary analysis from data collected in the 1990–1991 National Survey of Self Care and Aging to assess whether urinary incontinence and its severity were associated with the self-rating of poor health. The National Survey of Self-Care and Aging is a random sampling of geographic clusters of community-dwelling Medicare beneficiaries aged 65 and older in the contiguous United States. This study had a sample size of 3485, with oversampling of the oldest-old age group and men to enable subgroup analyses. Findings from Johnson et al.'s study confirm earlier research about the relationship between incontinence and health perceptions. This is an important milestone. Urinary incontinence was associated with poor self-rated health for white subjects who had no instrumental activities of daily living impairments even after controlling for age, activity of daily living status, and comorbid health conditions. The odds of rating one's health poor were doubled if the incontinence was mild to moderate and quadrupled if the incontinence was severe. Previous research examining the relationship between incontinence and self-rated health status has been criticized because of the failure to account adequately for frailty. Johnson et al.'s study did control carefully for functional status and comorbidity and found that urinary incontinence is associated with poor self-rated health independent of frailty. Although analyzed carefully and interpreted cautiously, this study has two main limitations. First, it was a post hoc comparison dependent on cross-sectional data collected in a larger study for a different purpose. Thus, as the authors pointed out, conclusions about causality are problematic. Prospective studies are needed. Second, the quantitative nature of the study, with fixed choice responses to a survey instrument, does not allow for the breadth of responses that might come from in-depth interviews of incontinent individuals, allowing better understanding of why they rated their health as poor. Was it because of the incontinence and its associated symptoms or consequences, or are there other unexplained factors that might have been missed? Future research should address the frame of reference used by incontinent adults in their self-ratings of health. Krause and Jay6 found that global ratings of health are interpreted in different ways by different people and that these ways may depend on race and, possibly, education. Understanding why persons rate health in a particular way may be helpful in determining appropriate interventions. Additional studies on the HRQL of incontinent older adults are greatly needed. There is much that we still need to learn about how age, gender, and lower urinary tract pathophysiology alter the impact of incontinence on HRQL, as well as the factors that influence HRQL. However, these studies should be based on a clear conceptualization of HRQL in which the determinants of quality of life are distinguished from the dimensions of quality of life. Wilson and Cleary7 have presented a useful model that helps categorize clinical variables and shows their relationships with measures of HRQL. In their model, various patient outcomes are linked with causal pathways to show how intervening variables mediate the effect on HRQL. Their model includes five levels of patient outcomes: biological and physiological factors, symptoms, functioning, general health perceptions, and quality of life. Characteristics of the individual (e.g., personality, motivation, values, preferences, and symptom amplification) and of the environment (e.g., psychological, social, and economic supports) influence the five levels in complex ways. In addition, nonmedical factors may directly influence an individual's rating of overall quality of life. Translating their model to incontinence research, the biological and physiological factors might include the underlying pathophysiology of the lower urinary tract, urodynamic variables, and pelvic support and pelvic muscle strength characteristics. Symptoms are the patient's perception of abnormal physical, emotional, or cognitive states and are influenced by demographic and cultural factors. Examples of these include lower urinary tract symptoms such as urgency, frequency, nocturia, and incontinence. Functioning refers to the individual's ability to carry out his/her normal activities. General health perceptions would be the individual's self-rating of health status. Overall quality of life would be the individual's life satisfaction as a whole. In conclusion, the qualitative study by DuBeau and her colleagues and the survey analysis by Johnson and his associates complement each other, enriching our understanding of the way incontinence is interpreted and processed by patients. Further depth and refinement in our understanding of the impact of incontinence can lead to more focused and more effective interventions that will improve the HRQL of the millions of Americans who suffer from incontinence.