“It won’t kill anyone, but you really lose your life.” – Judith (patient with urinary and fecal incontinence)
Urinary incontinence (UI) and fecal incontinence (FI), also known by the patient-preferred term “accidental bowel leakage” or ABL, are prevalent conditions among older women. While incontinence is not life-threatening, it is costly to patients and the health care system and can be extremely detrimental to women’s quality of life. Fortunately, there are many ways to manage incontinence, ranging from conservative to surgical options. Unfortunately, incontinence is an undertreated condition, in part because of a lack of effective communication between patients and primary care providers (PCPs).
Women with incontinence often experience embarrassment, shame, and stigma that cause them to hesitate to seek care until they have struggled with incontinence for years. In a previous study, we heard from patients that they prefer physicians to initiate the conversation around UI and FI.1 In this present study, we identified barriers as well as facilitators to screening for UI and FI amongst PCPs.
“[PCPs] have to know how devastating it is. I’ve been told that I’m lucky because my condition won’t kill me but I don’t feel lucky… You don’t have any friends. You can’t go to social gatherings. You’re always afraid something is going to happen. I used enemas, did not eat for 5 days on purpose before I went to an event.” -Judith (patient with UI and FI)
Patient – provider communication about urinary and fecal incontinence
Clinicians who provide primary care to older women are often on the lookout for UI, which affects more than 40% of older women. In fact, screening for UI in women aged 65 years or older is a Merit-based Incentive Payment System (MIPS) quality metric. However, despite the fact that FI affects 15% of older women and men, the perception among PCPs is that FI is uncommon among their patients. Not surprisingly, while 75% of PCPs participating in our survey screened at least some patients for UI, far fewer (35%) screened at least some patients for FI. This finding is also consistent with existing evidence that FI is undertreated in women with both UI and FI.
“No one would ask about incontinence so it went undiagnosed. When I asked, people tended to just write it down in chart and not speak to me about it. Or would run away from me. I assumed that there was no treatment.” –Judith (patient with UI and FI)
Most clinicians who responded to our survey were already aware of risk factors for FI such as older age, childbirth, treatment for prostate cancer, and associated symptoms like diarrhea and constipation, but only a minority recognized other important risk factors like diabetes. A large portion of PCPs in our sample perceived FI to be more common in women than men, though the prevalence is actually equal in men and women, especially after age 65. Although the National Institutes of Health launched a Bowel Awareness Campaign a decade ago, (e.g., National Institutes of Health Bowel Control Awareness Campaign), only 6% of our respondents were aware of it. Clearly, there is room for improvements in awareness and knowledge about UI and FI.
Gaps in knowledge and awareness
“Most [physicians] want to help but they don’t know how. You have to frame it in a way by saying, ‘I’m really sorry I don’t have anyone else to talk to. I’m really sorry but I really need help.’ That triggered something in a lot of physicians because that is why they went into that. I was desperate. I was putting myself out there. I was more comfortable with saying it than continuing to live this way.” –Judith (patient with UI and FI)
To the extent that PCPs are aware of FI, they are unsure how to best help their patients. In general, our respondents felt significantly less informed to manage FI than UI. Nearly a third stated they had no good treatments to offer for FI (only 12% said the same about UI) and 10% said there was no one to whom they could refer patients with FI (compared to 4% with UI).
Discomfort with the topic of FI on the provider side, coupled with the common misperceptions that patients do not want to discuss incontinence or will broach the subject independently if they do, contribute to low screening rates. While patients want their doctor to initiate discussions about FI, a noteworthy proportion of providers (17%) expect their patients to start the conversation or divulge symptoms. The result, too often, is a cycle of silence.
We were heartened by the variety of terminology reported by our study participants when discussing incontinence with patients, ranging from “fecal incontinence” to “trouble holding in your stool/poop,” and “pooping your pants.” Only 18% said they used the term “accidental bowel leakage,” which is preferred by patients over more clinical terms like FI and “bowel incontinence.”1We suggest that healthcare providers be prepared to use various terms and descriptions of FI in order to ensure that they are communicating clearly with patients. If one term fails to register with a particular patient, perhaps another will. Using the patient-preferred term “accidental bowel leakage” is a conscientious choice, and use of that term or the term “bowel control issues” was significantly correlated with screening for FI in our study, but we suggest that healthcare providers be aware of—and deploy simultaneously—multiple plain-language synonyms.
What can we (urologists and urogynecologists) do to help PCPs?
Maybe the greatest tragedy of ineffective provider-patient communication—or silence—surrounding FI is the fact that most patients can improve their symptoms through behavioral (Kegel exercises and dietary modifications), medical, or surgical treatments.
We can impact the problem of under-diagnosis and under-treatment by educating our PCP colleagues about common risk factors and symptoms and participating in the development of best practices for screening, diagnosis, and referral. We can help PCPs generate tools like process maps or algorithms for diagnosis and treatment, electronic medical record innovations, and up-to-date and comprehensive specialist referral lists. We can advocate within our health systems for UI and FI screening as part of merit-based incentive payment systems (MIPS). Those of us working in academic settings can help to enhance Internal Medicine, Family Medicine, and Ob-Gyn resident education surrounding UI, FI, and other pelvic floor disorders—especially given the fact that residents were the population least likely to screen for FI in our study.
What can we do to help patients?
Beyond a lack of knowledge or comfort with the topic of FI, PCPs face real barriers to screening for FI. More than a third of our respondents said they lacked ample time to screen for UI or FI, while an overwhelming majority said they did not always (if ever) screen for UI and FI because they had too many higher priority issues to address. We have no desire to deflect responsibility for addressing UI and FI toward patients and away from health care professionals, but we do advocate for interventions that empower women with UI and FI to seek the attention and answers they deserve from the health care system. By raising awareness among patients and interdisciplinary colleagues that UI and FI are common and treatable medical conditions, we can help improve the provider-patient conversation from both sides. Raising awareness about conditions that are commonly comorbid with UI and FI, such as diabetes and neurologic disorders, can also contribute to increased awareness of the broad impact of incontinence.
Written by: Nicholas Schmuhl, Ph.D.; Assistant Scientist, Associate Director of Global Women’s Health, Wen Guan, BS, and Heidi Brown, MD, MAS, Department of Obstetrics & Gynecology University of Wisconsin-Madison
1. Westenberg, D. and Brown, H. (2017). Barriers to seeking care for accidental bowel leakage: A qualitative study: Beyond the Abstract. [online] Urotoday.com.
Read the Abstract