DDW 2013 Note: What Keeps Patients and Doctors from Addressing Fecal Incontinence?

Fecal incontinence (accidental loss of liquid or solid stool), which will be abbreviated FI here, is a sensitive and difficult health problem that is present in about 9% of the overall adult population1. It becomes more common with age, rising in prevalence from about 3% of people aged 20-30 to more than 15% in those 70 years and older1. When FI happens frequently (2.7% of U.S. adults have FI episodes once a week or more) it can have a major adverse impact on people’s lives if untreated, leading to substantial problems in areas such as mobility, work, social life, and self-esteem.

FI is a highly treatable problem.  Anorectal biofeedback2 and sacral nerve stimulation3,4 are both treatments that seem to help get rid of the problem entirely in half of cases and also significantly improve about half of the remaining cases where complete continence is not achieved. Furthermore, a much simpler treatment that consists of systematic use of pelvic floor exercises results in improvement in FI in roughly half of cases as well5. But even though these methods are highly effective, they actually benefit far fewer individuals than one might hope, because most cases of fecal incontinence never even come to the attention of healthcare providers and no treatment can therefore be offered. Surveys indicate that 70 to 90 percent of individuals who have FI have not talked to their doctor about it6. Although it is understandable that fecal incontinence can be hard to talk about, there are important and often severe adverse personal consequences that can be prevented only by addressing the problem it in healthcare encounters. Finding ways to systematically overcome the barriers that keep fecal incontinence a largely hidden and unaddressed health problem could improve the lives of millions of adults who now suffer the consequences without any help. The first step is to understand what keep patients and doctors from addressing the problem.

In a poster presentation at Digestive Disease Week 2013 in Orlando yesterday, Saturday May 18, investigators in our UNC Center for Functional GI & Motility Disorders reported the findings of a study of 124 adults who were identified as having FI by asking them about it when they came to clinic visits in a variety of clinics in the UNC Healthcare System (primary care, urogynecolory, gastroenterology and geriatrics). Eighty-eight of these individuals had consulted with  doctors about their FI problem  (those can be called FI consulters) but 36 had not done so (i.e., they were FI non-consulters). The patients were surveyed through written questionnaires to evaluate the severity and frequency of their FI and its impact on their lives, and they were also interviewed over the phone about their experiences and views on interacting with healthcare providers about it and outlook on treatment for the problem.

Some of the key findings were:

    • The  severity and frequency of fecal incontinence episodes was not different between FI consulters and  non-consulters (as measured on the validated Fecal Incontinence Severity Index)
    • Most (77.1%) FI  non-consulters stated that doctors need to ask directly about  incontinence. However, half of them also indicated a preference for being asked about it through a questionnaire.
    • The only aspects of quality of life impact of fecal incontinence (measured on a validated FI-QOL scale) that was different between consulters and non-consulters was depression/self-esteem impact, which was greater in consulters
    • Among FI non-consulters, 44.4% reported that they believed that there was no effective treatment available for fecal incontinence, versus only 15.6% of FI consulters.
    • The three most common reasons FI non-consulters gave for not discussing their FI problem with their doctor were not thinking it was serious enough (57.1%), thinking it was just a normal part of aging rather than a medical problem (45.7%), and embarrassment (37.1%).

The investigators also interviewed 11 physicians in the clinics where the patients were recruited, to get a sense of the reasons why doctors fail to screen routinely for fecal incontinence by asking their patients about it. Only 4 of the 11 doctors reported that they did not screen for fecal incontinence, and they mostly stated lack of time in patient visits as a reason not to do so. They were also more likely than doctors who screened to believe that fecal incontinence is a rare condition.

This study gives a fairly clear idea of what keeps so many patients and doctors from addressing FI in clinical encounters, and also provides some insights about what is needed to overcome those barriers. The results indicate that more than half of the patients who do not report FI to their doctors simply do not regard their FI as a significant problem. However, many other patients are held back from reporting FI to doctors by embarrassment or because they wrongly do not believe it is treatable. It would seem that the patients in the latter category need to be helped to overcome the hindrances to getting help for FI by making education about effective treatments for FI widely available and by screening for FI in a way that minimizes embarrassment and doctor time burden. It is noteworthy that individuals with FI who have not consulted doctors mostly do feel that doctors and clinics should ask them about it directly and many of them would prefer that this be done via a questionnaire. Routine use of a few simple questions (or even a single one) on paper to screen for this problem in all visits to major healthcare service settings like primary care and geriatric clinics would enable healthcare providers to reliably identify and offer care for fecal incontinence in most adults who make any use of healthcare.

Presentation:

Sa2036. “Fecal Incontinence: What Determines Which Patients Consult Physicians and Which Physicians Screen?” Lalitha Kunduru, Sung M. Kim, Steve Heymen, William E. Whitehead. Center for Functional GI and Motility Disorders, University of North Carolina, Chapel Hill, NC.

          References:

1. Whitehead WE, Borrud L, Goode PS, Meikle S, Mueller ER, Tuteja A, Weidner A, Weinstein M, Ye W. Fecal incontinence in US adults: epidemiology and risk factors. Gastroenterol 2009;137:512-517.

2. Heymen S, Scarlett Y, Jones K, Ringel Y, Drossman D, Whitehead WE. Randomized controlled trial shows biofeedback to be superior to pelvic floor exercises for fecal incontinence. Dis Colon Rectum 2009;52:1730-1737.

3. Tjandra JJ, Chan MK, Yeh CH, Murray-Green C. Sacral Nerve Stimulation is more Effective than Optimal Medical Therapy for Severe Fecal Incontinence: A Randomized, Controlled Study. Dis Colon Rectum 2008;51:494-502.

4. Wexner SD, Coller JA, Devroede G, Hull T, McCallum R, Chan M, Ayscue JM, Shobeiri AS, Margolin D, England M, Kaufman H, Snape WJ, Mutlu E, Chua H, Pettit P, Nagle D, Madoff RD, Lerew DR, Mellgren A. Sacral nerve stimulation for fecal incontinence: results of a 120-patient prospective multicenter study. Ann Surg 2010;251:441-449.

5. Norton C, Chelvanayagam S, Wilson-Barnett J, Redfern S, Kamm MA. Randomized controlled trial of biofeedback for fecal incontinence. Gastroenterology. 2003 Nov;125(5):1320-9.

6. Dunivan GC, Heymen S, Palsson OS, von Korff M, Turner MJ, Melville JL, Whitehead WE. Fecal incontinence in primary care: prevalence, diagnosis, and
health care utilization. Am J Obstet Gynecol. 2010 May;202(5):493.e1-6. doi: 10.1016/j.ajog.2010.01.018. PubMed PMID: 20223447.

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