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This chapter focuses on the prevalence and incidence rate of faecal incontinence in the general population and specific subgroups, including the elderly and children.. Problems with Meas

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This chapter focuses on the prevalence and incidence

rate of faecal incontinence in the general population

and specific subgroups, including the elderly and

children Epidemiological definitions are described,

and problems with measuring faecal incontinence

are discussed Descriptive studies of prevalence and

incidence rates are reviewed, including demographic

determinants and the reliability of the prevalence

estimates A thorough discussion of risk factors for

the development of faecal incontinence is covered

elsewhere in this volume Having highlighted the

need for valid, reliable measurement tools, an

exam-ple of such a tool is given for use in epidemiologic

studies

Definitions

The following epidemiologic definitions are used in

this chapter:

Prevalence: the proportion of a population with a

disease at a specific point in time This is also called the

“point” prevalence Prevalence measures are given as

proportions, percentages or cases per population

Incidence Rate: a measure of how rapidly peopleare newly developing a disease or health status, rep-resented by the number of new cases in a time perioddivided by the average population in that time peri-

od Although commonly called the “incidence”, this

is a true rate, as it measures the number of new

diag-noses per population per time period.

Epidemiological Bias: systematic deviation ofstudy results from the true results because of the way

in which the study is conducted This is usually

divid-ed into three types of bias: selection bias, informationbias and confounding Table 1 demonstrates the com-mon causes of bias in prevalence studies of faecalincontinence and their likely effect on the prevalenceestimate

Problems with Measurement

Measuring faecal incontinence has long proved cult for those wishing to study its epidemiology.When measuring the frequency of faecal inconti-nence in a population, it is necessary to have a clearidea of both the definition and the criteria for diag-nosis A consistent case definition is vital for dataabout prevalence and incidence rate to be meaning-

diffi-Epidemiology of Faecal Incontinence

Alexandra K Macmillan, Arend E.H Merrie

2

Table 1.Sources of bias in prevalence studies of faecal incontinence and their likely effect on the prevalence rate [1]

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ful and comparable While faecal incontinence is

commonly defined as a loss of voluntary control of

the passage of liquid or stool, it is usual for clinicians

to use this term to include incontinence of flatus The

term “anal incontinence” has also been used to

include the uncontrolled passage of flatus and liquid

or solid stool These two definitions can therefore be

confusing, and we recommend the continued use of

the term “faecal incontinence” to include the

incon-tinence of flatus as part of a continuum Some

quali-fication of these definitions with regard to quantity,

frequency and impact on quality of life is also

required in any assessment of prevalence or

inci-dence rate, particularly if such an assessment is to be

useful for planning to meet a community need for

assessment and treatment services Rather than a

sin-gle disease, faecal incontinence represents a clinical

spectrum with diverse manifestations that are closely

related to its varied aetiology This makes

classifica-tion within the case definiclassifica-tion important The Rome

committees [2–4] have provided useful case

defini-tions for functional faecal incontinence that can

eas-ily be converted for also defining faecal incontinence

with an organic origin

Some work around definition and classification

has been done in the paediatric population in which

there is again confusing terminology There have

been several attempts to standardise the definition of

functional faecal incontinence in childhood, which

accounts for more than 90% of cases [5, 6] The term

“encopresis” is commonly used for paediatric faecal

incontinence; however, there is variability about its

definition in the literature In 1994, a “classic” set of

criteria was defined for encopresis (with or without

symptoms of constipation) [7] The criteria included

two or more faecal incontinence episodes per week in

children older than 4 years The Rome II consensus

group also defined criteria for nonretentive faecal

incontinence of once per week or more for at least 3

months in a child older than 4 years [6, 8] However,

these two definitions exclude faecal incontinencesecondary to constipation and faecal retention,which account for a significant proportion of cases[5, 6, 9] In 2004, a consensus conference on faecalincontinence defined encopresis as the repeatedincontinence of a normal bowel movement in inap-propriate places by a child aged 4 years or older [9].Soiling was defined as the involuntary leakage ofsmall amounts of stool, and both encopresis and soil-ing were encompassed in the term faecal inconti-nence No criteria related to frequency were included

in this definition These definitions are summarised

in Table 2

In addition to the inconsistencies in definition andclassification noted above, data relating to morbidityfrom faecal incontinence is not included in routinelycollected data sets (such as emergency hospitaladmissions or deaths) This lack of routine dataresults in a reliance on self-reported assessments foraccurate epidemiologic measurement A number ofmethods can be used to collect such data about theprevalence of faecal incontinence, most commonly

by telephone or face-to-face interviews or by postalsurveys These methods can either be anonymous ornamed Comparison of data collection methods forfaecal incontinence has not been undertaken How-ever, for other socially sensitive behaviours, thevalidity of data collected via face-to-face or telephoneinterviews compared with self-administered surveyshas been tested From this testing, anonymous ques-tionnaires are recommended, as they provide agreater degree of validity than either interviewmethod These measurement challenges are com-pounded by sufferers’ social stigmatisation and com-munity members’ reluctance to discuss bowel habits

in general [10, 11]

In summary, definitions and survey methods nificantly affect the outcomes of studies measuringthe frequency of faecal incontinence in the popula-tion We recommend the use of the term “faecal

sig-Table 2.Definitions of functional paediatric faecal incontinence [1]

normal bowel movement

in the underwear (or other unorthodox locations)

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incontinence” that includes incontinence of flatus for

both adults and children Furthermore, anonymous,

self-administered questionnaires are the

recom-mended survey method for cross-sectional studies of

faecal incontinence

Studies Measuring Disease Frequency

Prevalence in the Adult Population

Several cross-sectional prevalence studies have been

undertaken; however, they all used different

defini-tions of faecal incontinence, few used anonymous

questionnaires and they included different age

groups and sample populations In addition, many of

the studies have been hampered by poor response

rates Together, these factors contribute to

signifi-cant epidemiological bias within studies, limiting

estimate interpretation and making prevalence

esti-mates difficult to compare

This likely explains why the prevalence of faecal

incontinence for adults in the community reported in

cross-sectional studies varies more than ten-fold

Thomas et al [12] reported a prevalence of 0.43%among general practice patients in the UK butdefined faecal incontinence as “faecal soiling twice ormore per month” and relied on face-to-face confir-mation of answers to a postal survey Using a moresensitive definition and an anonymous self-adminis-tered questionnaire, Giebel et al surveyed hospitalpatients, employees and their families and found aprevalence of any loss of control of stool, “winds” orfrequent faecal soiling of almost 20% [13] The fullrange of results found in prevalence studies of com-munity adults is demonstrated in Figure 1

Four studies that minimised epidemiological bias

by using anonymous, self-administered naires sampling randomly from the general adultpopulation and achieving a good response rate found

question-a prevquestion-alence rquestion-ate of fquestion-aecquestion-al incontinence rquestion-anging from11% to 17% [14–16] These studies are summarised

in Table 3

In keeping with a commonly held belief, thesestudies (Table 3) demonstrated an increasing preva-lence of faecal incontinence with increasing age: up

to 25% in those aged over 70 years [14] However, thestudies also examined gender differences in preva-

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lence, and contrary to popular belief, there was no

clear gender difference Johanson and Lafferty [14]

and Lam et al [16] found a higher prevalence in men

than in women, Kalantar et al [15] found no

signifi-cant difference between men and women and

Siproudhis et al [17] found a higher prevalence in

women (Table 4) Further investigation is required to

establish whether there are differences in the

fre-quency of faecal incontinence related to other

demo-graphic factors, such as ethnicity, occupation or

socioeconomic status

Prevalence in Older Adults

The best-designed prevalence studies of faecal

incon-tinence in the general population, discussed above,

have demonstrated an increasing prevalence withincreasing age Indeed, it has previously beenassumed that faecal incontinence is limited to elder-

ly populations and some women following birth A number of epidemiological studies havetherefore focused solely on elderly populations,either community dwelling or in institutional care.These studies have similar problems with varyingdefinitions of significant incontinence, subject sam-pling, age groups, response rates and data collectionmethods Added to these problems is the frequentuse of proxy respondents, particularly for those eld-ers in institutions Perhaps the most reliable estimateresults from a study by Talley et al in 1992 [18] Theyused a validated self-administered questionnaire toassess faecal incontinence (among other gastroin-testinal symptoms) in community-dwelling adults 65

child-Table 3.Prevalence of faecal incontinence in studies that minimised sources of epidemiological bias

incontinence

of flatus >25%

of the time

or place

a Estimated from sample size and response rates stated using a simple random sample assumption of design effect

Table 4.Prevalence of faecal incontinence by gender in least-biased studies where figures were available

(95% confidence interval) (95% confidence interval)

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years and older and found an age-adjusted

preva-lence of more than once per week of 3.7%, with 6.1%

of the same population wearing a pad There was no

difference between men and women and no

signifi-cant increase in prevalence with age within elders

This prevalence estimate is somewhat lower than that

reported for the oldest subjects in the general

popu-lation studies described above This is likely to be

related to a less sensitive definition of incontinence

Prevalence in the Paediatric Population

There have been very few prevalence studies of

child-hood faecal incontinence, and no formal systematic

review of epidemiological studies has been

undertak-en Bellman’s seminal epidemiological studies in the

1960s provided a strong basis for more recent work

[19] As with studies of adult faecal incontinence,

these prevalence studies used variable definitions of

incontinence, soiling and encopresis, as discussed

previously Issues of low response rate and

difficul-ties with data collection are made more problematic

in children because of the need for parental

permis-sion and assistance to take part in research Faecal

incontinence is very distressing for children, and

they will often attempt to hide their incontinence

from their parents [9] Parents are often also

embar-rassed and distressed by their child’s incontinence,

leading to under-reporting [19] This is likely to

result in underestimation of the problem by

preva-lence studies Although the accuracy of parental

information about bowel habit has been tested [20],

no study has investigated the accuracy of

informa-tion from the child alone All these factors affect the

prevalence found by these studies

Anonymously collected data from a random

questionnaire sample of more than 1,000 6- to

9-year-old Danish school children [21] recently

sug-gested a prevalence higher than that commonly

quoted, with a prevalence of 5.6% in girls and 8.3%

in boys However, no definition of faecal

inconti-nence was given A more recent population-based

prevalence of encopresis was significantly higher inchildren of lower socioeconomic status These stud-ies demonstrate potential information bias, with thelack of definition in one and method of data collec-tion in the other being likely to underestimate theprevalence

meas-Conclusion

In conclusion, the prevalence of faecal incontinence

in the general population is poorly understood Fromthe available studies, it is likely that the prevalence isbetween 11% and 17%, which is higher than usuallyquoted This appears similar for both genders andincreases with age There is some indication that theprevalence of faecal incontinence also varies bysocioeconomic status and ethnicity In children,there have been too few well-designed studies to esti-mate a prevalence range; however, it is likely to behigher than that normally quoted for the reasons dis-cussed above

For future epidemiologic studies, a consensus inition of faecal incontinence is recommended thatincludes any incontinence of flatus, liquid stool orsolid stool that impacts on quality of life in adultsand children [1] Any further prevalence studiesshould ideally be undertaken using anonymous self-administered questionnaires to aid with minimisingbias Widespread use of a standardised questionnairewould assist with achieving consistency and compa-

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BOWEL CONTROL QUESTIONNAIRE

The first section relates to general information, and will help with our data analysis

2 What is your age in years?

3 Which of these ethnic groups do you identify with most? (Please tick the box or boxes that apply to you)

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4 What is your highest level of education? (Please tick one)

University Entrance (e.g Bursary) 

Trade/Professional Diploma of Certificate 

5 What is your occupation?

(e.g primary school teacher, homemaker/caregiver, motel manager, clothing machinist)

If retired or currently unemployed, please also state most recent occupation

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The following questions relate to your usual bowel habit in the last 3 months.

6 On average, how often did you pass a bowel motion in the past 3 months?

(Please tick one)

More than 3 times per day 

2 to 3 times per day 

2 to 3 times per week 

Less than once per week 

7 What has been the usual consistency of your bowel motions in the past 3 months?

(Please circle the ONE type that applies to you USUALLY)

Type Description

1 Separate hard lumps like nuts (difficult to pass)

2 Sausage shaped but lumpy

3 Like a sausage but with cracks on its surface

4 Like a sausage or snake, smooth and soft

5 Soft blobs with clear-cut edges (passed easily)

6 Fluffy pieces with ragged edges, a mushy stool

7 Water, no solid pieces, ENTIRELY LIQUID

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The next question relates to any difficulty you may have had passing a bowel motion

in the past 3 months

8 In the past 3 months have you experienced any of the following? (Please tick all that apply to you)

Straining on more than 1 out every 4 bowel motions 

Feeling that your bowel motion is incomplete more than a

Feeling of blockage during bowel motions more than a

Need to use fingers or hands to help with passing a bowel motion more than a quarter of the time 

None of the above statements apply to me 

9 In the past 3 months have you used medications regularly, including laxatives or antidiarrhoeal

medication, to help you pass a bowel motion?

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The following section relates to any amount of bowel leakage (accidental loss of gas, mucus or stool/faeces)you may have had in the last month.

10 For each of the following, please mark on average how often in the past month you experienced any amount of bowel leakage

(Ngati Whatua translations are given in brackets)

PLEASE TICK ONE BOX IN EACH ROW

11 How often in the past month did you wear a pad because of bowel leakage?

2 or more times a day 

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12 In the past month, did you have any warning or feeling when you needed to pass a bowel motion?

The following question relates to your bladder control in the past month.

14 In the past month have you experienced loss of control of your bladder

(a) on coughing, laughing, sneezing or other physical activity?

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The next questions are only for women If you are male Go to Question

22 on the next page.

15 How many children have you given birth to?

If you have had no children Go to Question 21.

16 Thinking back on these births, how many were vaginal deliveries?

17 In your longest labour, how long did you push for (second stage)? (Please tick one)

18 Thinking back on all your labours, were forceps or instruments ever used?

19 Thinking back on all your labours, did you ever have a tear or episiotomy involving the muscles

of your anus (back passage)?

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The following questions are for everyone.

22 Have you ever had any of the following types of surgery to your bowels or anus

(back passage)? (Please tick all that apply to you)

Removal and rejoining of party of your bowel 

Anal fistula surgery 

Operation on anal muscles 

Operation for haemorrhoids or piles 

Major prostate operation 

None of the above 

23 Do you have a stoma (bag) for emptying your bowels?

25 Do you suffer from any of the following medical problems? (Please tick all that apply to you)

Inflammatory bowel disease 

(Eg Crohn’s disease or ulcerative colitis) 

Irritable bowel syndrome 

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The following section relates to how your bowel habit may be affecting your lifestyle.

26 In general, would you say your health is:

27 For each of the items below, please indicate by circling the appropriate number, how much of the time

the item is a concern for you due to any accidental bowel leakage (gas, liquid, solid or mucus) If it is a

concern for you for another reason (not accidental bowel leakage), then please circle “None of the time”

PLEASE CIRCLE ONE NUMBER IN EACH ROW

of the of the of the of the Applicable Because of accidental bowel leakage: time time time time

like going to a movie or to church

stay near a toilet as much as possible

around my bowel habit

toilet in time

enough to get to the bathroom

very near a bathroom

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28 Because of any accidental bowel leakage, please indicate, by circling one number in each row, how much

you agree or disagree with each of the following statements

If it is a concern for you for another reason, or not a concern at all, please circle N/A.

PLEASE CIRCLE ONE ANSWER IN EACH ROW

Due to accidental bowel Strongly Somewhat Somewhat Strongly Not

accidents is always on my mind

public transport

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29 During the past month, have you felt so sad, discouraged, hopeless, or had so many problems that youwondered if anything was worthwhile?

Extremely so- to the point where I have just about given up 

Other health professional 

Please say what kind of health professional

31 Have you been referred to any other service for loss of bowel control?

Yes  Please say where

This is the end of the questionnaire.

Thank you for your time and assistance

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(2004) The prevalence of fecal incontinence in

com-munity-dwelling adults: a systematic review of the

lit-erature Dis Colon Rectum 47:1341–1349

disorders and the Rome II process Gut 45:1–5

Rome II The functional gastrointestinal disorders.

Allen, Lawrence

Func-tional disorders of the anus and rectum Gut 45:55–59

chil-dren Am Fam Physician 55:2229–2235

Use of Rome II criteria in childhood defecation

disor-ders: Applicability in clinical and research practice J

Pediatr 145:213–217

encopresis always the result of constipation? Arch Dis

Child 71:186–193

Childhood functional gastrointestinal disorders Gut

45(Suppl 2):II60–II68

of pediatric fecal incontinence Gastroenterology

126:S33–S40

10 Dare OO, Cleland JG (1994) Reliability and validity of

survey data on sexual behaviour Health Transit Rev

4:93–110

11 Rossi PH, Wright JD, Anderson AB (eds) (1983)

Hand-book of survey research Academic Press, Orlando

12 Thomas TM, Egan M, Walgrove A, Meade TW (1984)

The prevalence of faecal and double incontinence.

Community Med 6:216–220

13 Giebel GD, Lefering R, Troidl H, Blochl H (1998)

Prevalence of fecal incontinence: what can be

expect-ed? Int J Colorectal Dis 13:73–77

14 Johanson JF, Lafferty J (1996) Epidemiology of fecal

incontinence: the silent affliction Am J Gastroenterol

91:33–36

15 Kalantar JS, Howell S, Talley NJ (2002) Prevalence of

faecal incontinence and associated risk factors; an

underdiagnosed problem in the Australian

communi-ty? Med J Aust 176:54–57

16 Lam TCF, Kennedy ML, Chen FC et al (1999) lence of faecal incontinence: obstetric and constipa- tion-related risk factors; a population-based study Colorectal Disease 1:197–203

Preva-17 Siproudhis L, Pigot F, Godeberge P et al (2006) cation disorders: A French population survey Dis Colon and Rectum 49:219–227

Defe-18 Talley NJ, O’Keefe EA, Zinsmeister AR, Melton LJ 3rd (1992) Prevalence of gastrointestinal symptoms in the elderly: A population-based study Gastroenterology 102:895–901

19 Bellman M (1966) Studies on encopresis Acta

Paedia-tr Scand 170(Suppl):3–151

20 van der Plas RN, Benninga MA, Redekop WK et al (1997) How accurate is the recall of bowel habits in children with defaecation disorders? Eur J Pediatr 156:178–181

21 Hansen A, Hansen B, Dahm T (1997) Urinary tract infection, day wetting and other voiding symptoms in seven- to eight-year-old Danish children Acta Paedia-

tr 86:1345–1349

22 van der Wal MF, Benninga MA, Hirasing RA (2005) The prevalence of encopresis in a multicultural popu- lation J Paediatr Gastroenter Nutr 40:345–348

23 Macmillan AK (2004) Design and validation of the New Zealand Faecal Incontinence Questionnaire Mas- ters thesis, University of Auckland

24 O’Donnell LJD, Virjee J, Heaton KW (1990) Detection

of pseudodiarrhoea by simple clinical assessment of intestinal transit rate BMJ 300:439:440

25 Heaton KW, Ghosh S, Braddon FEM (1991) How bad are the symptoms and bowel dysfunction of patients with the irritable bowel syndrome? A prospective, con- trolled study with emphasis on stool form Gut 32:73–79

26 Heaton KW, Radvan J, Cripps H et al (1992) tion frequency and timing, and stool form in the gen- eral population: a prospective study Gut 33:818–824

Defeca-27 Rockwood TH, Church JM, Fleshman JW et al (1999) Patient and surgeon ranking of the severity of symp- toms associated with fecal incontinence: the fecal incontinence severitry index Dis Colon Rectum 42(12):1525–1531

28 Rockwood TH, Church JM, Fleshman JW et al (2000) Fecal incontinence quality of life scale: quality of life instrument for patients with fecal incontinence Dis Colon Rectum 43:9–17

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