Factors Associated With Care Seeking Among Women With Accidental Bowel Leakage

Factors Associated With Care Seeking Among WomenWith Accidental Bowel Leakage

Heidi W. Brown, MD,* Steven D. Wexner, MD,Þ and Emily S. Lukacz, MD*

Objective: The aim of this study was to characterize factors associatedwith care seeking among women with accidental bowel leakage (ABL).Methods: A secondary analysis of 938 women with ABL identifiedin a community-based Internet survey of 5817 US women 45 years orolder was performed. Demographics, medical history, incontinence se-verity, quality of life, coping, and care seeking were assessed using ques-tions derived from validated questionnaires. Accidental bowel leakage wasdefined as at least 1 episode of stool leakage in the past year in the ab-sence of acute diarrheal illness. Women with ABL were asked, ‘‘Have youever talked to a physician about accidental leakage of stool and/or gas?’’and were designated ‘‘care seekers’’ if they responded affirmatively. Fac-tors associated with care seeking on univariate analysis with P G 0.1 wereincluded in a multivariate model.Results: The response rate overall was 85% (5817/6873) with 1096women (19%) reporting ABL. Care-seeking data were available for 938(86%). Of these, 85% were white, 6% were black/African American, 5%were of Hispanic/Latina/Spanish origin, and 4% other; median age was55 to 59 years (range, 45 to 49, 975 years), and 87% were insured. Only29% (268/938) of those with ABL sought care. Multivariate analysisdemonstrated that care seekers were more likely to have a primary carephysician (PCP), to have heard of ABL, and to have suffered longer withmore severe leakage.Conclusions: More than two thirds of women with ABL do not seekcare. Because those with a PCP and those who have heard of the con-dition are more likely to seek care, educating the public about ABL andencouraging establishment of care and communication with a PCP maydecrease silent suffering.

Key Words: accidental bowel leakage, fecal incontinence, care seeking

(Female Pelvic Med Reconstr Surg 2013;19: 66Y71)

Fecal incontinence, or accidental bowel leakage (ABL), isdefined by the International Continence Society as ‘‘the in-

voluntary loss of liquid or solid stool that is a social or hy-gienic problem.’’1 Estimates of the prevalence of ABL amongcommunity-dwelling US women vary widely and approach

almost 25% according to some studies.2Y14 We recently con-ducted a community-based Internet survey of more than 5000US women, 19% of whom had experienced ABL at least oncein the last year, and 9% of whom had experienced ABL at leastmonthly in the last year.15 Despite a well-documented signifi-cant negative impact on quality of life,6,16 most patients withABL do not seek care for their condition. Rates of care seekingfor ABL range from 8% to 34% in the United States.2Y4,16Y18

Women with more severe ABL, those with more embarrassmentrelated to their condition, and those who perceive their over-all health status as fair or poor are more likely to see a physicianfor ABL.2,17

Although ABL has historically been difficult to treat, awide range of treatment options for this condition now exists.First-line management includes fiber supplementation, antidiar-rheal agents, and pelvic floor physical therapy or biofeedback.19

In addition, many novel therapies are available today, includinginjectables, radiofrequency ablation, neuromodulation, and sur-gical repair.20Y26 With such an array of available treatments,access to care becomes paramount to improve the condition se-verity and quality of life of patients with ABL.

The objective of this study was to characterize factors as-sociated with care seeking among women with ABL.

MATERIALS AND METHODS

PopulationThe Mature Women’s Health Study was an Internet-based

survey conducted by the Nielsen Corporation via their e-panel,an electronic voluntary panel representative of the generalInternet-accessible population. The primary objective of theMature Women’s Health Study was to assess the impact of fecalincontinence on mature US women. Women 45 years and olderin the voluntary electronic panel, whose membership is com-posed of approximately 105,000 consumers ages 18 to 100 yearsrandomly recruited through rotating Internet banner advertise-ments, were invited to participate. The Internet-based surveywas pilot tested in nearly 800 women to ensure reliability ofthe methods before full implementation. The final questionnairewas then administered in 2 recruitment waves of more than6000 invitations total in September 2009. A third wave of 685invitations to minority subgroups was conducted specificallyto improve minority representation. A $3 incentive was offeredto each participant. Further details about this study have beenpublished previously.15 Institutional review board approval fromthe University of California, San Diego, was obtained for anal-yses of these deidentified data.

QuestionnaireThe questionnaire was designed to assess the prevalence

and impact of ABL on US women. In addition to demographicdata maintained in the e-panel, questions related to obstetric andmedical history and continence were included. Continence wasassessed using stem questions adapted from the Fecal Inconti-nence Severity Index27 and NHANES section on bowel health.28

AUGS CONFERENCE PRESENTATION

66 www.fpmrs.net Female Pelvic Medicine & Reconstructive Surgery & Volume 19, Number 2, March/April 2013

From the *Department of Reproductive Medicine, UC San Diego HealthSystem, La Jolla, CA; and †Department of Colorectal Surgery, ClevelandClinic Florida, Weston, FL.Reprints: Heidi W. Brown, MD, Department of Reproductive Medicine, UC

San Diego Health System, 9350 Campus Point Dr, no. 0974, La Jolla,CA 92037. E-mail: [email protected].

Conflicts of interest and source of funding: Heidi Brown has nothing todisclose. Steven Wexner is a paid consultant in the field of fecalincontinence for Salix, Ventrus, Renew Medical, Inc, MediriTherapeutics, and Medtronic. Emily Lukacz is a paid consultant forPfizer, consultant and recipient of grant funding from Johnson andJohnson and research and educational grant funding from the NationalInstitutes of Health and Renew Medical, Inc. Renew Medical, Inc.markets devices for the treatment of fecal incontinence.

Presented as oral podium presentation at the 2012 AUGS Annual ScientificMeeting, Thursday, October 4, 2012.

Copyright * 2013 by Lippincott Williams & WilkinsDOI: 10.1097/SPV.0b013e31828016d3

Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

Women with ABL were asked specifically about frequency andseverity of leakage, degree of ‘‘bother,’’ related attitudes andbehaviors, impact on quality of life, and care seeking. To assesscare seeking, women with ABL were asked, ‘‘Have you ever

talked to a physician about accidental leakage of stool and/orgas?’’ Those who responded affirmatively were asked to specifywhat type(s) of physician they talked to: general practitioner/family physician, internist/internal medicine, obstetrician/gyne-cologist, gastroenterologist, colorectal surgeon, urologist, orother. Details about the survey instrument have been publishedpreviously.15,16

StatisticsAnalyses were conducted on the subset of respondents to

the Mature Women’s Health Study who responded affirmativelyto 2 questions about presence and frequency of leakage of solidor liquid stool in the past 12 months and were thus consideredto have ABL. Those women for whom care seeking data wereunavailable were excluded. Women who responded affirmativelythat they had ever talked to a physician about their accidentalleakage of stool and/or gas were categorized as care seekers;those who responded negatively were categorized as nonYcareseekers.

Descriptive analyses were performed to characterize careseekers and nonYcare seekers in terms of demographics, medical

FIGURE 1. CONSORT diagram.

TABLE 1. Sample Description

All Women With ABL(n = 938), n (%)

ABL Care Seekers(n = 268), n (%)

ABL Non Care Seekers(n = 670), n (%) P

Married 509 (54.3) 152 (56.7) 357 (53.5) 0.340Lives alone 266 (28.4) 71 (26.5) 195 (29.1) 0.423Age, y 0.99545Y54 274 (29.2) 77 (28.7) 197 (29.4)55Y64 343 (36.6) 99 (36.9) 244 (36.4)65Y74 281 (30.0) 81 (30.2) 200 (29.9)75+ 40 (4.3) 11 (4.1) 29 (4.3)

Race 0.060White (reference) 796 (84.9) 221 (82.5) 575 (85.8)Black/African American 60 (6.4) 15 (5.6) 45 (6.7)Asian 19 (2.0) 4 (1.5) 15 (2.2)Hispanic/Latina/Spanish 44 (4.7) 19 (7.1) 25 (3.7)American Indian/Alaska native 8 (0.9) 5 (1.9) 3 (0.4)Other 11 (1.2) 4 (1.5) 7 (1.0)

Education 39 (4.2) 19 (7.1) 20 (3.0) 0.023GHigh schoolHigh school 368 (39.2) 94 (35.1) 274 (40.9)Some college 307 (32.7) 89 (33.2) 218 (32.5)Completed college 224 (23.9) 66 (24.6) 158 (23.6)

Employed 402 (42.9) 113 (42.2) 289 (43.1) 0.786Income Q $40,000 per year 397 (44.9) 117 (45.5) 280 (44.7) 0.814Considers health fair or poor 269 (28.7) 99 (36.9) 170 (25.4) G0.001Health insurance 811 (86.5) 238 (88.8) 573 (85.5) 0.184Has a PCP 855 (91.2) 253 (94.4) 602 (89.9) 0.027Has urinary incontinence 671 (71.5) 189 (70.5) 482 (71.9) 0.664Has heard of fecal or bowel incontinence 423 (45.1) 154 (57.5) 269 (40.1) G0.001ABL severity by Wexner Scale* 8.4 (4.5) 10.7 (4.7) 7.5 (4.1) G0.001Has experienced ABL for: G0.001G1 y 242 (26.0) 42 (15.8) 200 (30.0)1Y5 y 529 (56.8) 147 (55.3) 382 (57.4)95 y 161 (17.3) 77 (28.9) 84 (12.6)Missing 6 2 4

*Reported as mean (SD).

Female Pelvic Medicine & Reconstructive Surgery & Volume 19, Number 2, March/April 2013 Care Seeking for ABL

* 2013 Lippincott Williams & Wilkins www.fpmrs.net 67


history, and continence descriptors. A modified Wexner Conti-nence Grading Scale,27 which incorporates information aboutpad use, lifestyle alteration, and frequency of leakage, was usedto quantify ABL severity (range, 0Y20). W2 testing and logisticregression modeling were used to identify variables significantlyassociated with care seeking. We selected those variables with aP value of less than 0.1 on univariate analysis for inclusion in amultivariate backward conditional logistic regression model. W2

testing was also performed to describe condition-related atti-tudes, perceptions, and quality of life. SPSS version 20.0 wasused for analyses.

RESULTSAmong 6873 women invited to participate in the study,

85% (n = 5817) completed the survey; differences between re-spondents and nonresponders are described elsewhere.15 Over-all, the sample was predominantly well educated and insured,with a median age range of 55 to 59 years, and most identifiedtheir race/ethnicity as white (additional sample description avail-able elsewhere).15 Using a definition of at least 1 episode of

bowel leakage per year, the prevalence of ABL was 18.8% (1096/5817; 95% confidence interval, 17.8%Y19.9%). Complete dataregarding care seeking were available for 85.6% (938/1096) ofwomen with ABL (Fig. 1). There were no significant differencesin ABL severity between those women who completed the careseeking questions and those who did not (data not shown).Among women for whom care seeking data were available,28.6% (268/938) had ever talked to a physician about acciden-tal leakage of stool and/or gas and were categorized as careseekers. Of those women who had talked to a physician abouttheir ABL, 56% (150/268) had talked to a primary care physi-cian (PCP). Information about the specific types of physicianswith whom women discussed their condition have been previ-ously reported.16

Care seekers and nonYcare seekers did not differ signif-icantly in age, marital status, employment, income, health in-surance, and urinary continence status (Table 1). On univariateanalysis, care seekers were more likely to report race/ethnicityas of Hispanic/Latina/Spanish origin, less likely to have at-tended college, and more likely to report perceived health statusas fair or poor, but these relationships did not maintain statis-tical significance in the multivariate model (Table 2). Careseekers were more likely to have a PCP and to have heard offecal or bowel incontinence. They were also more likely to havemore severe ABL and to have experienced it for greater than5 years (Table 2).

Regarding descriptors of ABL, care seekers were morelikely to wear a pad, to leak more frequently, and to endorsesymptoms of ABL without warning, fecal urgency, fecal fre-quency, nocturnal bowel movements, stress ABL, and ABL ofsmall amounts (Table 3). Most (995%) of all women with ABLreported leakage of liquid/loose stool and leakage of gas. Careseekers were more likely than nonYcare seekers to report leak-age of solid/formed stool (Table 3).

Regarding terminology to describe their condition, most ofboth care seekers and nonYcare seekers preferred the term ‘‘ac-cidental bowel leakage’’ to the more commonly used medicalterms ‘‘bowel incontinence’’ or ‘‘fecal incontinence’’; however,preference for the medical terms was greater among care seekersthan among nonYcare seekers (Table 4). Care seekers were morelikely to have talked about ABL with a friend, partner, or lovedone and to personally know of someone else who suffers fromABL (Table 4). More than half of care seekers reported feeling

TABLE 2. Multivariate Model Predicting Care Seeking*

CharacteristicAdjusted Odds Ratio

(95% Confidence Interval) P

Has heard of FI or bowelincontinence

1.66 (1.22Y2.27) 0.001

ABL severity (Wexnerscale)

1.16 (1.12Y1.21) G0.001

Has a PCP 1.86 (1. 01Y3. 34) 0.048Considers health fairor poor

1.37 (0.98Y1.91) 0.064

Has been suffering withABL for 1 y

1.00 (referent) G0.001

Has suffered for 1Y5 y 1.60 (1.07Y2.39) 0.022Has suffered for 95 y 3.87 (2.38Y6.27) G0.001

*Race and education were included in the model but did not maintainstatistical significance.

FI, fecal incontinence.

TABLE 3. Accidental Bowel Leakage Descriptors



ABL NonYCare Seekers(n = 670), n (%) P

Wears a pad for ABL 481 (51.3) 177 (66.0) 304 (45.4) G0.001Leakage less than monthly 479 (51.1) 81 (30.2) 398 (59.4) G0.001Leakage monthly 205 (21.9) 74 (27.6) 131 (19.6)Leakage weekly/daily 254 (27.1) 113 (42.2) 141 (21.0)Leakage of gas 893 (95.2) 263 (98.1) 630 (94.0) 0.008Leakage of liquid/loose stool 913 (97.3) 261 (97.4) 652 (97.3) 0.949Leakage of solid/formed stool 409 (43.6) 156 (58.2) 253 (37.8) G0.001Has ABL without warning 597 (63.6) 197 (73.5) 400 (59.7) G0.001Fecal urgency 751 (80.1) 239 (89.2) 512 (76.4) G0.001Fecal frequency 286 (30.5) 134 (50.0) 152 (22.7) G0.001Nocturnal bowel movements 218 (23.2) 100 (37.3) 118 (17.6) G0.001Stress ABL 329 (35.1) 130 (48.5) 199 (29.7) G0.001ABL of small amounts 713 (76.0) 222 (82.8) 491 (73.3) 0.002

Brown et al Female Pelvic Medicine & Reconstructive Surgery & Volume 19, Number 2, March/April 2013

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very comfortable talking to a physician about their condition,versus only 20% of nonYcare seekers (Table 4). When queriedabout the impact of ABL on their quality of life, care seekers

were more likely than nonYcare seekers to report that the con-dition impacted their quality of life ‘‘very much’’ or ‘‘greatly’’in all 9 domains explored (Fig. 2).

TABLE 4. Attitudes and Impact on Quality of Life



ABL NonYCare Seekers(n = 670), n (%) P

Preferred term G0.001Accidental bowel leakage 667 (71.1) 162 (60.4) 505 (75.4)Bowel incontinence 211 (22.5) 80 (29.9) 131 (19.6)Fecal incontinence 60 (6.4) 26 (9.7) 34 (5.1)

Has ever talked about ABL with a friend, partner, or loved one 478 (51.0) 205 (76.5) 273 (40.7) G0.001Personally knows of someone else who suffers from ABL 369 (39.3) 125 (46.6) 244 (36.4) 0.004No. people outside of self and physician who knowabout ABL

G0.001

None 374 (39.9) 43 (16.0) 331 (49.4)1Y2 399 (42.5) 132 (49.3) 267 (39.9)3Y4 108 (11.5) 48 (17.9) 60 (9.0)Q5 57 (6.1) 45 (16.8) 12 (1.8)

How comfortable would you feel talking to a physicianabout your ABL?

G0.001

Not at all comfortable 83 (8.8) 11 (4.1) 72 (10.7)Somewhat uncomfortable 188 (20.0) 25 (9.3) 163 (24.3)Neither un- nor comfortable 155 (16.5) 22 (8.2) 133 (19.9)Somewhat comfortable 235 (25.1) 70 (26.1) 165 (24.6)Very comfortable 277 (29.5) 140 (52.2) 137 (20.4)

ABL compromises my QoL G0.001Never 155 (16.5) 25 (9.3) 130 (19.4)Less than monthly 353 (37.6) 69 (25.7) 284 (42.4)Monthly 115 (12.3) 37 (13.8) 78 (11.6)Weekly 153 (16.3) 52 (19.4) 101 (15.1)Daily 162 (17.3) 85 (31.7) 77 (11.5)

QoL, quality of life.

FIGURE 2. Impact of ABL on quality of life among care seekers and nonYcare seekers.




DISCUSSIONIn our study of 938 US women with ABL, more than two

thirds had never discussed their condition with a physician.Those who had sought care were more likely to have a PCP, tohave heard of fecal or bowel incontinence, and to have sufferedfor longer with more severe leakage. Our categorization of se-verity using a modified Wexner Continence Grading Scale iscorroborated by our findings that care seekers were more likelyto wear a pad, to leak more frequently, to have more solid stoolincontinence, and to endorse associated symptoms of ABL (suchas fecal urgency, fecal frequency, nocturnal bowel movements,and stress ABL).

These findings are similar to those of the study of thenext largest sample of more than 500 women with ABL, inwhich those with more severe ABL and those who perceivedtheir overall health status as fair or poor were more likely to seea physician for ABL.2 In a smaller study of 130 women withABL seeking general gynecologic care, those with leakage ofsolid stool and those with more embarrassment related to theircondition were more likely to seek care.17 Similarly, in ourstudy, leakage of liquid or loose stool was not predictive of careseeking, but leakage of solid/formed stool was more commonamong care seekers. Furthermore, care seekers were more likelythan nonYcare seekers to report that the condition impactedtheir quality of life ‘‘very much’’ or ‘‘greatly’’ in all 9 qualityof life domains explored.

The strengths of this study include its large sample sizeand high response rate and the use of a validated questionnaireto assess severity of ABL. Furthermore, the private, Internet-based, self-administration of sensitive questions may decreasereporting bias and facilitate more honest responses. Limitationsinclude biases possible with survey research including report-ing, response, recall, and selection bias. This sample was welleducated, well insured, predominantly white, and Internet ac-cessible, which may limit generalizability to the US popula-tion overall. However, given the paucity of data in the literatureabout care seeking for ABL, this study still provides valuable in-formation about an under-explored topic.

There has been very limited research exploring barriersto care seeking for ABL. In a small study of gynecologic can-cer survivors with pelvic floor disorders, patients did not seekcare for their pelvic floor disorders because they were moreconcerned about their malignancy.29 In a sample of 130 womenwith ABL presenting for routine gynecologic care, 115 had notsought care; 83% reported that no health care provider had in-quired about ABL, and 45% felt that treatment was not avail-able for this condition.17 The perception that treatment is notavailable may be held by both patients and providers alike. Al-though this condition has historically been very challenging totreat, there currently exists a wide range of options with mini-mal risk and better success rates than older treatments optionssuch as sphincteroplasty.20Y26

In addition to traditional barriers to care seeking for anycondition (cost, transportation, inconvenience, fear), care seek-ing for incontinence may also be hindered by embarrassment,lack of comfort discussing such issues with one’s physician,perception of the condition as a normal part of aging, percep-tion of a lack of available/successful treatments, prioritization ofother medical conditions, and development of personal copingskills that obviate the need for medical treatment. Qualitativestudies characterizing barriers to care seeking for urinary in-continence in the US and the United Kingdom identify severalthemes, including embarrassment,30Y32 belief that incontinenceis normal after childbirth or with advanced age,30,31,33 lack ofinformation about available treatments,30,32 and development of

coping strategies.31,33 Not surprisingly, care seekers in our co-hort were more likely to have talked about ABL with a friend,partner, or loved one and to report feeling ‘‘very comfortable’’talking to a physician about their condition. Thus, there is greatneed to raise awareness in the public sector and facilitate com-munication between physicians and patients about ABL and theappropriate treatment options.

It is possible that the very terminology we use to describeaccidental leakage of stool acts as a barrier. Most of both careseekers and nonYcare seekers in this study preferred the term‘‘accidental bowel leakage’’ to the more commonly used medi-cal terms ‘‘bowel incontinence’’ or ‘‘fecal incontinence.’’ Fur-thermore, only 45% of all the patients with ABL in this studyhad heard of fecal or bowel incontinence. Interestingly, prefer-ence for the medical terms was greater among care seekers thanamong nonYcare seekers, as was knowledge of these terms(57.5% vs 40.1%).

In conclusion, in this large study of US women with ABL,less than one third had ever discussed their condition with aphysician. Because those with a PCP and those who have heardof the condition are more likely to seek care, educating the publicabout ABL and encouraging establishment of care with a PCPmay decrease silent suffering and increase care seeking. Ex-ploration of more socially acceptable terminology and increasedresearch to ascertain barriers to care seeking are imperative toconnect patients with available services for this condition.

ACKNOWLEDGMENTSCollection of these data was funded by Renew Medical,

Inc, for the purpose of market research.

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Factors Associated With Care Seeking Among Women With Accidental Bowel Leakage