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Urinary incontinence (UI) and fecal incontinence (FI) affect millions of individuals older than 65 years in the United States and are reported to have a larger effect on health-related quality of life than diabetes mellitus, cancer, or arthritis.1 The likelihood of incontinence increases with age, increased body mass index, and diabetes mellitus; rates are also higher in men undergoing any type of prostate surgery and among women following pregnancy or vaginal delivery.2–5 With the exception of serious injuries, surgeries, or childhood diseases such as spina bifida, incontinence often starts as small, intermittent losses of urine that gradually increases in severity over time, particularly when the individual experiences certain comorbid conditions that affect lower urinary tract function or mobility.6
The prevalence of UI in those 65 years or older is as high as 60% for women and 35% for men 65 years or older.7,8 Fecal incontinence is estimated to affect about a quarter to a third of those with UI older than 50 years.9 Urinary incontinence, particularly when paired with FI, is a leading cause of admission to nursing homes and skilled care settings.2,10,11 Although only about 10% of the Medicare population is in an institutional setting (long-term care or skilled nursing facility [SNF]), an estimated 45% to 60% of those Medicare beneficiaries have UI.2,10–12 The prevalence of FI in institutions is less well known, but 3 studies suggest that half to three-fourths of institutional residents who experience UI may also experience FI, with a higher prevalence of FI among men.2,5,7,12
The remaining Medicare population is aging at home independently or being cared for by family or receiving care from a home health agency or hospice care. The prevalence of UI in the home setting is estimated to be 46% for female Medicare beneficiaries and 28% for male beneficiaries, with about 10% experiencing dual incontinence (DI), that is, UI and FI.2 For those under hospice care, the rate of UI is more than 60%, with almost half of those experiencing both UI and FI.2
The most common management strategy for UI is the use of disposable body-worn absorbent products (BWAPs), although surgery, medications, and other types of preventive or collection medical devices are also available. For those using a BWAP, the most common mode of failure is leakage that can result in several complications for the individual including an increase in slips and falls,13 incontinence-associated dermatitis (IAD),14–16 serious wounds or infections including UTIs, and a reduction in sleep quality that can contribute to cognitive decline and behavioral disturbances.17 Incontinence has been associated with both an increased need for care assistance and an increased turnover of caregivers.18,19
Despite the emotional distress and financial burden to the individuals and to the society, incontinence is often underreported.16 Reported incontinence prevalence varies widely due to difference in study designs, the method used to measure incontinence, the definition of incontinence, and sample selection. The primary purpose of this study was to examine the prevalence of UI, FI, and DI in older adults and their association with urinary tract infections (UTIs), dermatitis, slips and falls, and behavioral disturbances based on Medicare fee-for-service (FFS) claims data. Secondarily, we examined the prevalence of incontinence and its association with the 4 outcomes based on 4 sites of care: nursing home, SNF, home health, and self- or family care.
METHODSThis is a retrospective analysis that relied on administrative claims data from the CMS Medicare Limited Data Set (5% sample) to identify the prevalence of incontinence over all months in 2018. The target population was Medicare FFS beneficiaries (ie, we excluded Medicare Advantage [MA] beneficiaries) because of gaps in claims reporting in the MA beneficiary segment. To reduce duration bias caused by beneficiaries who have minimal exposure to Medicare, we also required at least 3 months of enrollment per member. Our analysis includes only the over-65 Medicare population, which we find to represent approximately 75% of the FFS beneficiary group. These criteria yielded approximately 1.2 million FFS beneficiaries with coverage in 2018 in the United States.
Outcome MeasuresTo identify UI and FI in the longitudinal sample population, we used International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) diagnosis codes captured in their claims experience for utilization analysis. Codes for relevant diagnoses, identified in any position on a claims record, are provided in the Appendix. Incontinent members were grouped into 3 mutually exclusive categories using the code list: UI only, FI only, and DI that included members with both UI and FI.
Member records were then divided into 4 categories based on care setting: nursing home, SNF, home health, and self- or family care according to the most resource-intensive site in which they received care during 2018. The resource intensity was assumed greatest for SNFs, followed by nursing home, home health, and self- or family care. The Centers for Medicare & Medicaid Services (CMS) considers an SNF to be a facility that primarily provides inpatient skilled nursing care and related services to patients who require medical, nursing, or rehabilitative services but does not provide the level of care or treatment available in a hospital. A nursing home, which includes assisted living, can do the same but offers, on a regular basis, health-related care services above the level of custodial care (https://www.cms.gov/medicare/coding/place-of-service-codes).
We also identified 4 healthcare events for each cohort: (1) UTIs; (2) dermatitis (we used multiple codes since the current code for incontinence-associated irritant dermatitis has not been added to ICD-10-CM in 2018); (3) slips, falls, and related fractures; and (4) claims associated with a behavioral disturbance (see the Appendix). The existence of these healthcare events was determined based on the presence of a relevant diagnosis code in the claims experience (see the Appendix). One additional instrument that we used was the risk score for each member. We applied the CMS-HCC Risk Adjustment Model developed by CMS to generate risk scores for each member in our studied population. In the model, a select number of diagnosis codes were grouped into various Hierarchical Chronic Categories (HCCs) and each of the HCCs consists of acute or chronic conditions that are clinically related and have similar pattern in healthcare expenditures. The risk score for each member was calculated based on their demographic factors (age and gender) and the disease factors captured in the HCCs. Higher risk score often associates with more severe health condition of a member.
The Office of Research Human Subjects Department at the University of California, Santa Barbara, reviewed this work and determined that it did not meet the criteria for human subjects research as defined in the Common Rule (45 CFR 46). Institutional Review Board review and oversight were not required because the activity does not involve “human subjects” as defined under 45 CFR 46.102 and the research team is not accessing identifiable patient information.
Data AnalysisAll results in this paper were generated using SAS software version 9.4 (SAS Institute Inc, Cary, North Carolina). Within each incontinent cohort, we summarized demographic statistics: average age, gender, and the average risk score. Additionally, we estimated the prevalence and the conditional average of the 4 identified healthcare events by incontinence cohorts and care settings. The prevalence for each event is defined as the number of members within each cohort who experienced at least one event during 2018. The conditional average number of events is the average number of events for members in a cohort who experienced at least one event in 2018. Member characteristics and the occurrence of each event by care settings and cohorts were compared using 2-sample z-tests, where we assumed normality assumption holds due to large sample size. We reported the level of P value from each test, where we set the level of significance to be .05.
RESULTSSummary statistics of those diagnosed as incontinent in 2018 by site of service and type of incontinence are presented in Table 1. In 2018, 11.2% of the members were diagnosed with UI, FI, or DI. The prevalence of incontinence was higher in places of service that offer more intensive care: 20.6% for SNFs, 16.6% for nursing homes, 24.5% for those receiving formal healthcare at home, and 8.6% under self/family care. In addition, 62% of those with DI were receiving some type of formal care, either institutional or home healthcare, as compared to 36% of those diagnosed with UI alone.
TABLE 1. - Summary Statistics for Incontinent and Not Incontinent Populations, 2018a Metrics Nursing Home (n = 10,635) SNF (n = 52,168) Home Health (n = 160,736) Home: Self- or Family Care (n = 1,019,634) Total (N = 1,243,173) Inco. Cohort Not Inco. Cohort Inco. Cohort Not Inco. Cohort Inco. Cohort Not Inco. Cohort Inco. Cohort Not Inco. Cohort Inco. Cohort Not Inco. Cohort Urinary incontinence Prevalence 13.5% of 10,635 17.3% of 52,168 21.5% of 160,736 7.9% of 1,019,634 10.1% of 1,243,173 Female 71.1% 70.5% 65.7%*** 63.7% 65.6%*** 61.6% 63.0%*** 54.8% 64.0%*** 56.0% Average risk score 2.18** 1.86 3.51*** 2.95 3.17*** 2.70 1.36*** 1.04 2.00*** 1.28 Average age, y 83.0 84.0 81.0** 82.0 81.0*** 80.0 76.0*** 74.0 78.0*** 75.0 Fecal incontinence Prevalence 0.5% of 10,635 0.8% of 52,168 0.9% of 160,736 0.4% of 1,019,634 0.5% of 1,243,173 Female 62.9% 70.5% 64.9% 63.7% 63.8%* 61.6% 69.9%*** 54.8% 68.2%*** 56.0% Average risk score 2.52 1.86 4.06** 2.95 3.51*** 2.70 1.44*** 1.04 2.07*** 1.28 Average age, y 84.0 84.0 80.0 82.0 80.0 80.0 76.0*** 74.0 77.0*** 75.0 Urinary and fecal incontinence (DI) Prevalence 2.6% of 10,635 2.5% of 52,168 2.2% of 160,736 0.3% of 1,019,634 0.7% of 1,243,173 Female 71.8% 70.5% 63.4% 63.7% 64.0%** 61.6% 76.8%*** 54.8% 69.14%*** 56.0% Average risk score 2.34* 1.86 3.90*** 2.95 3.77*** 2.70 1.71*** 1.04 2.95*** 1.28 Average age, y 83.0 84.0 82.0 82.0 81.0** 80.0 77.0*** 74.0 80.0*** 75.0 All incontinence Prevalence 16.6% of 10,635 20.6% of 52,168 24.5% of 160,736 8.6% of 1,019,634 11.2% of 1,243,173 Share of UI with FI 16.1% of 1,710 12.5% of 10,329 9.1% of 37,961 3.7% of 83,502 6.1% of 133,502 Female 71.0% 70.5% 65.4% 63.7% 65.4% 61.6% 63.8% 54.8% 64.5% 56.0% Average risk score 2.22 1.86 3.58 2.95 3.25 2.70 1.38 1.04 2.08 1.28 Average age, y 83.0 84.0 81.1 82.0 81.1 80.0 81.0 74.0 78.1 75.0Abbreviations: DI, dual incontinence; FI, fecal incontinence; Inco, incontinent; Not Inco., not incontinent; SNF, skilled nursing facility; UI, urinary incontinence.
aAsterisks represent significant difference between the incontinent and not incontinent groups within each place-of-service setting: ***P < .0001; **P < .05; *P < .10.
Abbreviations: Cond. Average, conditional average, or the average count conditional on having at least one observation; DI, dual incontinence; FI, fecal incontinence; Inco, incontinent; Not Inco., and not incontinent; SNF, skilled nursing facility; UI, urinary incontinence; UTI, urinary tract infection.
aAsterisks represent significant difference between the incontinent and not incontinent groups within each place-of-service setting: ***P < .0001; **P < .05; *P < .1.
We then analyzed the prevalence of documented healthcare events in Table 2. In nearly all settings, the rates of UTIs, dermatitis, slips and falls, and behavioral disturbances were statistically significantly higher in the incontinent cohort than in those without a diagnosis of incontinence. Specifically, those with UI were more likely to have at least one UTI than nonincontinent members (39.2% vs 12.9%; P = .0001). Conditional on having a UTI, urinary incontinent members will have 1.6 more UTIs than someone who has not been identified as incontinent (4.31 vs 2.69; P = .0001). The difference increases for those with DI; beneficiaries with DI were significantly more likely to have at least one UTI (47.9% vs 12.9%; P = .0001) and, conditional on having a UTI, will have significantly more UTIs than beneficiaries not diagnosed with incontinence (5.61 vs 2.69; P = .0001).
Analysis of dermatitis, slips and falls, and behavioral disturbances revealed similar findings (Figure 1). Those with UI, on average, are 72% more likely to have dermatitis (7.7% vs 4.5%; P = .0001), 63% more likely to experience a slip and fall (45.3% vs 27.8%; P = .0001), and more likely to experience a behavioral disturbance compared to those without an UI diagnosis (5.4% vs 2.2%; P = .0001). Once beneficiaries experience one of these conditions, they, on average, have 12% more dermatitis episodes (1.66 vs 1.49; P = .0001), 34% more slips and falls (5.52 vs 4.12; P = .0001), and 3% more behavioral disruptions than those without observed incontinence (5.03 vs 4.88; P = .0001; Figure 2). Beneficiaries diagnosed with incontinence were more than twice as likely to have fall-related injuries (14.2% vs 6.6%; P = .0001) compared to nonincontinent members. In addition, the frequency of fall-related injuries for incontinent members was significantly higher than beneficiaries without an incontinence diagnosis (2.29 vs 1.95; P = .05).
Figure 1.: Association between urinary incontinence and UTIs, dermatitis, slips and falls, and behavioral disturbances by care setting: prevalence. SNF indicates skilled nursing facility; UI, urinary continence; UTI, urinary tract infection.
Figure 2.: Association between urinary incontinence and UTIs, dermatitis, slips and falls, and behavioral disturbances by care setting: conditional average. SNF indicates skilled nursing facility; UI, urinary continence; UTI, urinary tract infection.
We found that members with a higher prevalence of UTIs, dermatitis, slips and falls, or behavioral disturbances were cared for by places of service with more intensive care. For example, in the most intensive places of service, SNFs, 60.5% of incontinent members in 2018 had at least one UTI, with a conditional average of more than 6 UTIs in 2018. In contrast, for those aging at home under self-care, 30.2% of incontinent members had at least one UTI, with a conditional average of 2.9 UTIs in 2018 (Table 1). Similarly, in 2018, 66.4% of incontinent members in an SNF had at least one
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