GASTROENTEROLOGY 2004;126:S8 –S13
Economic and Personal Impact of Fecal and Urinary Incontinence PHILIP B. MINER, JR. Oklahoma Foundation for Digestive Research, Oklahoma City, Oklahoma
Failure to control the elimination of urine or stool causes psychological stress, complicates medical illnesses and management, and has major economic consequences. Patients often describe the impact of both fecal and urinary incontinence in terms of shame and embarrassment and report that it causes them to isolate themselves from friends and family. Incontinence frequently results in an early decision to institutionalize elderly relatives because families have difficulty coping with incontinence at home. Not surprisingly, there is an increase in symptoms of depression and anxiety in patients with incontinence as well as degradation in quality of life that has been documented by standardized assessment instruments. The direct health care costs for urinary incontinence are estimated to be $16.3 billion per year (1995 costs). Separate cost estimates for fecal incontinence are not available. There is an acute need for methodologically sound studies to document the economic and personal impact of incontinence to develop guidelines for the allocation of health care resources and research funding to this major public health problem. This need is especially great for fecal incontinence, for which there is much less health care economic data than for urinary incontinence.
ailure to control the elimination of urine or stool causes psychological stress, complicates medical illnesses and management, and has major economic consequences. Urinary incontinence is a common but highly variable problem; the differential diagnosis is complex. Recent research related to fecal incontinence has unraveled much of the complexity of its pathophysiology, although our understanding of it lags behind that of urinary incontinence. Incontinence can be caused by problems related to muscular failure of the pelvic floor due to surgical or accidental disruption of the sphincter muscles of the anal canal, neurologic dysfunction of the pelvic floor resulting from suprasacral spinal cord injury, sacral nerve root injury, injury to the pelvic and rectal intramural nerves, and disorders of colonic and rectal function related to endocrine disorders, mucosal immune activation, or inflammation. Fecal incontinence covers a wide spectrum from involuntary but recognized passage
F
of gas, liquid, or solid stool (urge incontinence) to unrecognized anal leakage of mucus, fluid, or stool (passive incontinence). The intensity of sensation related to defecation and the volume of stool involuntarily passed helps delineate the etiology of fecal incontinence, but the wide variety of etiologies and difficulty in defining the cause of fecal incontinence with precision makes treatment solutions difficult to assess and interpretation of economic consequences complex. The personal impact of incontinence is profound, because many individuals withdraw from all social contact and remain tethered to the toilet in an attempt to minimize incontinent episodes. Minimal reported data are available to help understand the personal and economic impact of incontinence. Although there are data on urinary incontinence, most of the information available on fecal incontinence (summarized as follows) is derived from a few studies that are methodologically rather weak and from clinical experience with patients with this disorder. The available studies on fecal incontinence generally focus on a narrow part of the problem that cannot be extrapolated to the whole population with the disorder. For example, fecal incontinence in patients with diabetes has a complex pathophysiology that includes sensory changes, primary anal canal abnormalities, and issues of small intestinal and colonic function that do not occur in other illnesses. The various medical issues associated with diabetes are so complex that the impact of incontinence per se becomes buried among the numerous other personal and economic costs of the disease. Fecal incontinence following radiation for gynecologic cancer is another example; although an economic cost analysis is feasible, the application of the information is limited to a narrow part of the population, and the psychological issues of these patients are dominated by the underlying malignancy. At the other end of the spectrum, fecal incontinence associated with obstetric injury or hemorrhoidectomy has © 2004 by the American Gastroenterological Association
0016-5085/04/$30.00 doi:10.1053/j.gastro.2003.10.056
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costs that are identifiable, but population studies are rarely performed; in the case of obstetric injury, studies are focused on appropriate surgical intervention, the direct costs of which are identifiable, whereas the cost of failed surgery is not pursued. Frequently, the patients for whom the economic cost is the greatest have other medical issues (e.g., spinal cord injury) that outweigh the cost of the incontinence. Conversely, for the patients who pay the highest psychological price, the direct economic costs can be relatively small (e.g., the patient with irritable bowel syndrome who is confined to home because of sudden explosive episodes of diarrhea that prohibit traveling as far as the shopping mall). The broad spectrum of incontinence and the limited information available make this a difficult topic for generalized analysis.
Economic Impact of Incontinence Health care costs are classified as direct or indirect. Direct costs are those for delivering (or receiving) treatment and include physician and other health care provider fees, hospital fees, costs for medications, costs for continence pads or other appliances, and transportation costs for the purposes of obtaining health care. Indirect costs are those to the individual and ultimately to society from work absenteeism, impaired performance while at work, and changes in job status due to health (e.g., assignment to a lower-paying job that does not require contact with the public, which may occur as the result of incontinence). Some health economists also estimate the costs associated with treating the sequelae of a condition (e.g., skin breakdown secondary to incontinence) and treat this as a third category: consequent costs. Direct Economic Costs of Incontinence Estimates of direct health care costs for incontinence must take into account the fact that most affected individuals do not seek health care. Yarnell et al. found in a community survey of 1060 Welsh women that half of those with urinary incontinence serious enough to interfere with their daily activities had not consulted a physician.1 Similarly, for fecal incontinence, Edwards and Jones found that 54% of their sample of 2818 British men and women aged 65 years and older had not discussed this problem with their physicians.2 Huppe et al. obtained a similar estimate for reporting fecal incontinence to physicians in Germany.3 For urinary incontinence, a series of detailed studies of direct health care costs have been reported over the past 2 decades. The most recent and most comprehensive study estimated the annual direct care costs in 1995
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dollars for urinary incontinence in the United States to be $16.3 billion ($12.4 billion for women and $3.8 billion for men).4 See the references in this report for previous studies on this topic.4 In contrast, there are very few data available on the direct costs of treatment for fecal incontinence. A study performed in a referral urogynecologic surgery practice in Minnesota estimated from a study of 63 patients with fecal incontinence secondary to obstetric injury that the average lifetime charges to patients for treatment and follow-up were $17,166.5 However, it is difficult to extrapolate these costs to the general population for a number of reasons, as summarized in the editorial that accompanied the Minnesota study.6 It is likely that the actual lifetime costs of treating fecal incontinence are considerably higher. A single study in Canada estimated the cost of treating (managing) fecal and urinary incontinence in nursing homes in 1992 as $9771 per patient year.7 However, it should be noted that estimates of the cost of treating urinary incontinence in nursing homes frequently incorporate the cost of treating fecal incontinence as well because these 2 types of incontinence usually occur together in institutional settings and may require similar management strategies (i.e., containment devices, increased linen costs, assistance to the toilet, and treatment of decubitus ulcers). Diagnostic tests for evaluating patients with fecal incontinence are not expensive. Evaluation is focused on obtaining assurance that the gross structural appearance of the anal canal, rectum, and colon is normal and that microscopic mucosal changes do not indicate inflammation that needs to be treated. When abnormalities are found, intervention can often be successful. A variety of tests (Table 1) are available to assess neurologic or muscular function of the pelvic floor, and these are described by other contributors to this supplement. The most common is anorectal manometry. The Medicare reimbursement rate for anorectal manometry (50th percentile for the United States) is $299. Unfortunately, although anorectal manometry is available in many tertiary-care institutions with gastrointestinal motility equipment, true expertise in diagnosis and management is not readily available. Anorectal manometry comprises a minuscule part of the curriculum for postgraduate fellows in gastroenterology, gynecology, and colorectal surgery. Correcting this deficiency in training programs is pivotal if the treatment of incontinence is to progress. Medical or surgical intervention costs for fecal incontinence are identifiable, but Malouf et al. appropriately concluded that economic assessment is difficult because of the lack of uniform study populations, variation in
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Table 1. Procedures Often Performed for Evaluation of Fecal Incontinence Procedure New patient history and physical examination Existing patient history and physical examination Anorectal manometry Flexible sigmoidoscopy and biopsy Colonoscopy and biopsy Lactulose breath test Air contrast barium enema Pelvic computed tomography scan Transrectal ultrasonography Anal canal endoscopic ultrasonography Pelvic magnetic resonance imaging Defecography
CPT code
Median Medicare reimbursement ($)
99204
170
99214 91122 45331 45380 91065 74280 74170 76872
103 299 314 976 229 346 1204 320
45341 344 74181 1722 76499a Approximately 257b
aThere is no actual code for this procedure. 76499 ⫽ unlisted diagnostic radiographic procedure. Attach report. bBased on barium enema examination (74270).
surgical techniques, and regional costs.8 Often the studied option for management is so unique to the institution or surgeon performing the study that application to other institutions or to less skilled surgeons is impossible. Costs for procedures such as colostomy and the subsequent use of colostomy supplies vary by region of the country and especially between countries due to differences in health care delivery systems and methods of reimbursement. Outcome measurements are not standard, follow-up periods are often brief, and procedure failures are difficult to integrate into the cost of surgery and the subsequent cost of care. Although continence scoring systems provide an index of clinical success, they do not measure meaningful quality-of-life outcomes accurately (e.g., continence is often controlled by limiting activity to be close to a toilet). Health care– driven medical intervention costs are relatively small. Biofeedback is coded as 90911 (ICD-9-CM classification) and is reimbursed by Medicare at $219 (50th percentile for the United States).9 When it is successful, it carries the lowest cost. Success is usually evident after 3– 6 treatment sessions. When treatment is successful, it is also durable, with few patients requiring additional treatment. In our clinical and reported experience, approximately 70% of patients with fecal incontinence who can walk (limited neurologic compromise) and who are not demented (have appropriate recognition of the need to defecate) can be retrained to continence. Of the remaining 30%, many are improved by a wide variety of medications, including bile acid– binding drugs, antihistamines, and antimotility agents costing between $0.37 and $6.20 a day ($135–$2263 annually).
The cost of fecal and urinary incontinence for hospitalized patients is more difficult to ascertain. Some of the costs can be extrapolated from information obtained from the nursing home patient population (see following text); however, in acute-care hospitals, direct costs may be lost within the comprehensive cost of medical care related to the hospitalization. For example, for a patient undergoing treatment in the neurologic intensive care unit for a spinal cord lesion, the personnel cost for necessary hygiene as well as the cost of diapers, nonpermeable bed protectors, and other supplies is trivial compared with the enormous daily cost of medical care. For a patient in stable condition after a stroke who is admitted for less intensive treatment, the cost of hygienic care and perhaps the cost of managing bedsores may be a significant portion of the hospital charges, but the cost continues to be dwarfed by charges related to other aspects of medical care. Regarding the cost of fecal and urinary incontinence for nursing home residents, it is important to consider both daily direct costs and the economic impact of nursing home placement directly related to incontinence. A report from the U.S. Centers for Disease Control and Prevention estimated that in 1999 there were 1.6 million individuals residing in nursing homes and that the average length of time since admission for all residents was 892.4 days (almost 2.5 years).10 The report estimated that 48.7% of these elderly nursing home residents had difficulty controlling both bowel and bladder, whereas 12.8% had difficulty only in bladder control and 1.9% had difficulty only in bowel control. A total of 9.1% of the residents had an ostomy, an indwelling catheter, or a similar device, and it was estimated that 56% of residents received help with toileting.10 The cost of care specifically for fecal incontinence is not available. A study performed at 2 large nursing homes in New Jersey calculated the direct cost of incontinence in a nursing home as $17.21 per resident per day ($6281.65 per resident per year).11 The cost of managing fecal incontinence does not have a direct mathematical relationship with urinary incontinence, because there may be brief periods of fecal incontinence related to changes in diet or medications, midyear onset of incontinence, or infrequent untreated incontinent episodes. It is well recognized that incontinence is one of the primary reasons for arranging nursing home care for afflicted family members.12,13 In these instances, the cost of incontinence must be calculated as the cost of nursing home care. The report by the U.S. Centers for Disease Control and Prevention estimated that the average daily charge for all nursing home residents in 1999 was $115.91.10
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Indirect Economic Costs of Incontinence The indirect costs associated with urinary and fecal incontinence are not known but are believed to be large. Drossman et al. surveyed a representative sample of 5400 U.S. adults and found that 13.2% of those with any fecal incontinence and 29.4% of those with large-volume fecal incontinence, as opposed to only 4.2% of those without any gastrointestinal symptoms, described themselves as too sick to work or go to school.14 Those with large-volume fecal incontinence reported missing an average of 50 days from work or school in the past year due to illness compared with 4.9 days for those without gastrointestinal symptoms.14 The indirect economic impact of incontinence includes the payment of disability claims for patients with incontinence who are no longer able to work and the lost wages related to quitting work or retiring prematurely due to incontinence. Lost income for family members or friends who must leave their jobs to help incontinent patients must also be considered. Estimation of the cost in this sector is elusive but is believed to be hundreds of millions of dollars per year. In summary, the economic cost of incontinence is enormous but the exact economic toll on individuals, families, and the country’s resources is difficult to determine with precision. Economic models focusing on these issues should be developed to help garner resources to support research on managing incontinence.
Personal Impact of Incontinence Depression and Anxiety The association between urinary incontinence and symptoms of depression is well documented. However, studies have been limited with respect to sex and age representation; as a consequence, it is difficult to extrapolate to the entire population of incontinent persons. In a population-based study of 5701 women aged 50 – 69 years, Nygaard et al. found that women with severe urinary incontinence were 80% more likely to experience significant depression and that women with mild to moderate severity of urinary incontinence were 40% more likely to experience depression.15 Other surveys provide further documentation of the association between depression and the occurrence of urinary incontinence in men16 as well as women.17 The association of urinary incontinence with anxiety is also well documented. In the most definitive study, Mehta et al. found that urinary incontinence was associated with a 50% increase in the risk of symptoms of anxiety in both men and women.18 Bogner et al. reported that when urinary incontinence was severe enough to
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cause functional impairment, the prevalence of an anxiety disorder increased 4-fold.19 Similar associations between urinary incontinence and symptoms of anxiety were reported in other surveys.16,20 Although there are fewer studies documenting the psychological impact of fecal incontinence, it is believed to be greater than that of urinary incontinence. Edwards and Jones interviewed 2818 British men and women aged 65 years or older and found a 4-fold increase in anxiety and a 5-fold increase in depression for both men and women who were fecally incontinent.2 Verhagen et al. surveyed 3345 Dutch men and women aged 60 years and older and found that fecally incontinent individuals were more likely to report anxiety, shame, and frustration.21 Quality of Life Although the personal impact of incontinence is obvious, applying science to quantify that impact has proven more difficult. In a group of 218 consecutive women with urinary incontinence, Melville et al. found that there was a significant impairment on both the physical and mental functioning scales of the Medical Outcomes Survey Short Form (SF)-12 Health Status questionnaire.17 On a quality-of-life instrument designed specifically for urinary incontinence, these women exhibited significantly more embarrassment, avoidance of social interaction, and psychosocial distress. Stewart et al. similarly reported that men and women with overactive bladder plus urge incontinence showed significant impairments on both the physical and mental scales of the SF-36 questionnaire.16 Fecal incontinence has also been associated with impaired quality of life on standardized scales. In their study of 2818 British men and women aged 65 years and older, Edwards and Jones2 found that 59% of fecally incontinent subjects described themselves as severely disabled compared with 16% of those without fecal incontinence; however, the data are unclear with respect to whether physical disability results from or causes fecal incontinence. In a community-based survey of 704 residents aged 65 years or older from Olmstead County, Minnesota, O’Keefe et al. found that fecally incontinent subjects had impairments on the role functioning scales of the SF-36 questionnaire.22 Burnett et al. administered the SF-36 questionnaire to consecutive patients attending a gastroenterology outpatient clinic in the United States and found that fecally incontinent patients reported greater impairment on all scales of this qualityof-life instrument,23 and Crowell et al. reported similar observations.24 Failkow et al. compared patients with double incontinence with those with urinary inconti-
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nence alone and found a significantly greater impairment on the physical functioning scale of the SF-12 among those patients who had both fecal and urinary incontinence.25 Psychological issues have been commented on extensively in most reviews of incontinence. The profound psychological issues associated with incontinence have their origins in early control and dependency. As children approach the age of 2 years and recognize that they can control when they sleep, when and what they eat, and when they urinate and defecate, they assume a sense of independence and self. This important early stage of development prepares the child for life ahead. When incontinence occurs later in life, regressive behavior with a loss of control can be a devastating burden. Self-esteem is diminished by the inability to control the bladder and bowels, and issues related to cleanliness add to the psychological problems. Incontinence is often accompanied by alienation from family and friends and can have a further negative impact on self-esteem. In the isolation, which is either self-imposed or established by others, sadness and depression often occur along with loneliness due to the loss of social contact. Other emotions that commonly occur are anxiety due to the unexpected occurrence of incontinence episodes and anger directed at the source of incontinence (e.g., a motor vehicle accident) and the medical community for its inability to provide compassionate care even if the incontinence cannot be improved. The anger and hostility expressed during the first office visit are often so intense and diffusely directed that no progress can be made toward improving the incontinence until the second visit. Physical consequences are few in number but important in their implications for medical care. Perineal dermatitis occurs due to the leaching of oils from the skin combined with chemical irritation from urine and stool. It is often painful, with tissue edema and superficial ulceration, which can lead to deep ulceration and, in rare instances, to sepsis. The perineal pain that occurs with movement and with the friction of clothing adversely influences behavior and function by limiting the ability to sit for long periods (for work, travel, or entertaining) and by interfering with walking and exercise. Nutritional issues may arise from attempts to control incontinence by limiting food and fluid intake. Patients discover this management approach for incontinence when they need to travel (even for an office visit); they avoid all food intake so that the colon is as empty as possible. If travel is required on a regular basis, nutritional compromise may occur as a consequence of this coping behavior. The amount of daily activity that can be endured by
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many incontinent elderly persons is limited, and dealing with incontinence may consume a significant percentage of that time. Social interaction is difficult to assess. In a controlled trial of retraining techniques for fecal incontinence, the common response of patients was that they felt better even though their diaries recorded the same number of incontinence episodes after retraining as before retraining.26 Their expression of improvement seemed to be related to an increase in activity level following incontinence retraining. Patients were willing to accept a certain level of incontinence; as they improved, they decided to lengthen the tether from toilet facilities. This observation has been confirmed by other physicians and surgeons. Aware of the length of the tether, patients attempt to cope by maintaining comprehensive knowledge of the location of all toilet facilities on their routes and by providing themselves with extra clothes and underclothes to permit changing if incontinence should occur. Often clothes are discarded because of the soiling or the difficulty getting them cleaned (e.g., clothes that require dry cleaning). Effects on sexuality also occur due to psychological inhibitions and the necessity for management of incontinence during sexual intercourse; most of the data in this regard are from the experience of patients with urinary incontinence.
Concluding Concepts The limited data available are sufficient for an appreciation of the personal impact and economic burden of incontinence. However, the ambiguity of the data needs to be addressed to marshal the resources to help improve the lives of patients with incontinence. Consideration of the following points may lead to a more comprehensive understanding. ●
Proper economic analysis should be directed toward isolating the cost of fecal incontinence, including medical and surgical options. The analysis should include the economic impact directly on the patients and their families and societal issues such as lost wages, disability insurance, and nursing home care.
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Economic analysis can justify financial support for medical research directed toward decreasing the number of patients with incontinence and limiting the number of incontinent episodes. Advances in this regard will serve the medical and emotional needs of the patients while decreasing the economic impact of incontinence.
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Medical management algorithms should be developed to improve outpatient care and decrease both fecal and urinary incontinence (e.g., retraining protocols). New strategies are needed for maximizing the utilization of available resources to delay or avoid admitting patients to medical facilities such as skilled nursing centers and nursing homes. Inpatient management algorithms in short-term and long-term care facilities should be improved to decrease the economic burden of personnel and supplies while improving the physical and psychological outlook for patients with urinary and fecal incontinence.
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Address requests for reprints to: Philip B. Miner, Jr., M.D., Oklahoma Foundation for Digestive Research, 711 Stanton L. Young Boulevard, Suite 624, Oklahoma City, Oklahoma 73104. e-mail:
[email protected]; fax: (405) 271-3296.