predicting the patients who will struggle with anal incontinence: sensitivity to disgust matters

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Accepted Article This article has been accepted for publication and undergone full peer review but has not been through the copyediting, typesetting, pagination and proofreading process which may lead to differences between this version and the Version of Record. Please cite this article as an 'Accepted Article', doi: 10.1111/codi.12781 This article is protected by copyright. All rights reserved. Received Date : 01-May-2014 Revised Date : 02-Jul-2014 Accepted Date : 15-Jul-2014 Article type : Original Article 262-2014.R1 Original Article Predicting the patients who will struggle with anal incontinence: sensitivity to disgust matters Lisa M. Reynolds*, MSc, PGDipHlthPsych PhD Candidate Department of Psychological Medicine, The University of Auckland Corresponding author: [email protected] Ian P. Bissett, MB ChB, FRACS, MD Academic Head Department of Surgery, The University of Auckland & Nathan S. Consedine, Ph.D. Associate Professor Department of Psychological Medicine, The University of Auckland

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This article has been accepted for publication and undergone full peer review but has not

been through the copyediting, typesetting, pagination and proofreading process which may

lead to differences between this version and the Version of Record. Please cite this article as

an 'Accepted Article', doi: 10.1111/codi.12781

This article is protected by copyright. All rights reserved.

Received Date : 01-May-2014

Revised Date : 02-Jul-2014

Accepted Date : 15-Jul-2014

Article type : Original Article

262-2014.R1

Original Article

Predicting the patients who will struggle with anal incontinence:

sensitivity to disgust matters

Lisa M. Reynolds*, MSc, PGDipHlthPsych

PhD Candidate

Department of Psychological Medicine, The University of Auckland

Corresponding author: [email protected]

Ian P. Bissett, MB ChB, FRACS, MD

Academic Head

Department of Surgery, The University of Auckland

&

Nathan S. Consedine, Ph.D.

Associate Professor

Department of Psychological Medicine, The University of Auckland

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This article is protected by copyright. All rights reserved.

Author contributions: Study conception and design: LR, IB and NC; Acquisition of data: LR;

Analysis and interpretation of data: LR, IB and NC; Writing manuscript: LR, IB, and NC.

Abstract

Aim: Quality of life varies in anal incontinence patients. The severity of symptoms is a

surprisingly modest predictor, but they reliably elicit disgust. The current work assessed

prospectively whether dispositional sensitivity to disgust predicted quality of life in patients

with anal incontinence.

Method: Seventy-five patients with anal incontinence identified from the Pelvic Floor Clinic

waiting list at the Greenlane Clinical Centre, Auckland, completed questionnaires assessing

symptom severity (FISI) and disgust sensitivity (DS-R) prior to a first appointment. Three

months later incontinence-specific (FI QLS) and general quality of life (WHOQOL-Bref) were

assessed.

Results: Greater severity of symptoms prospectively predicted lower incontinence specific

quality of life (FI QLS lifestyle domain) and lower general quality of life (WHOQOL-Bref

environmental domains). Greater disgust sensitivity predicted poorer psychological and

environmental well-being, and moderated the link between symptom severity and outcome.

Persons low in disgust sensitivity reported higher quality of life when symptom severity were

low, but those with a high disgust sensitivity had a low quality of life regardless of symptom

severity.

Conclusion: Functional status of patients with anal incontinence explains some, but not all of

the variation in quality of life. Emotional factors such as disgust appear to have a role. Disgust

sensitivity warrants further attention.

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What does this paper add to the literature? This paper identifies ‘disgust sensitivity’ to be an important predictor of well-being in

patients with anal incontinence and opens new avenues for possible interventions to assist

patients in coping with their disability.

Introduction

Adapting to the symptoms of anal incontinence can be very difficult. Passive soiling, urgency,

leakage and odour can all take their toll on quality of life (1-3). Well-being varies between

patients, however, with some taking uncontrollable faecal leakage in their stride and others

struggling with comparatively mild symptoms. The severity of incontinence is an obvious

predictor of quality of life and has a place in predicting those who might struggle most (4, 5),

but recent work suggests that the severity of symptoms is a blunt tool being only moderately

associated with incontinence-specific quality of life and only weakly related to general quality

of life (2). Clearly other factors are at work. In this study we set out to assess whether a

tendency to be disgusted may be related to quality of life as a factor in its own right.

Disgust is a basic emotion that evolved as an adaptive response to health risks and

contamination threat, promoting the avoidance of stimuli regarded as potentially contaminating

(6, 7). Anal incontinence is a fertile territory for disgust-inducing stimuli. The exposure to

faeces, unpleasant odours and the insertion of medical instruments into the anal canal are well

established causes of disgust (8), but despite its obvious relevance, disgust has been essentially

overlooked in the context of bowel disease. Other than a few recent studies investigating the

role of disgust in bowel cancer screening (9, 10), one study investigating disgust amongst

stoma patients (11) and some emerging experimental work (12), there is little research in this

area.

From a clinical perspective, there are reliable individual differences in the tendency to

feel disgust, known as disgust sensitivity (13) and it may be that this factor affects how well

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incontinent patients adapt to their symptoms. Disgust sensitivity predicts lower life satisfaction

in colostomy patients (11) and perhaps patients who are more disgust sensitive struggle more

with bowel symptoms than those who are less prone to disgust.

The current study investigated the predictors of quality of life among anal incontinence

patients with the following specific aims:

1. To confirm whether the severity of incontinence symptoms prospectively predicts quality

of life in incontinent patients.

2. To test whether disgust sensitivity prospectively predicts quality of life, beyond the

severity of incontinence symptoms.

3. To test whether disgust sensitivity moderates the relationship between the severity of

incontinence symptoms and quality of life.

Method

Data were collected for this cross-sectional, repeated measures study between September 2011

and November 2013. English-speaking patients with anal incontinence were identified from the

Pelvic Floor Clinic waiting list at the Greenlane Clinical Centre in Auckland. Prior to their first

appointment, qualifying patients were sent a letter inviting them to take part in the study, which

included an information sheet, postage-paid envelope and a questionnaire covering questions

about demographics, the severity of faecal incontinence, clinical experience, length of time

with symptoms, quality of life and disgust sensitivity. Participants completed the questionnaire

before their first appointment (Time 1) and then again three months after their clinic

appointment (Time 2). No incentive for participation was given. Ethics approval was granted

by the New Zealand Northern X Regional Ethics Committee.

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Patients

Of 194 eligible participants, 41% (n=80) completed the baseline questionnaire. Five were

excluded from the final analysis as they had been incorrectly identified as having anal

incontinence (n=4) or did not attend their scheduled Pelvic Floor Clinic appointment (n=1).

The median age was 62 (29-90) years with the majority being female (84%). Most participants

were New Zealand European (n=61; 81%), four were Maori, one was Pacific, two were Asian

and seven were other ethnicities. Participants often had different forms of incontinence

including 40 (55%) with passive incontinence, 41 with urge incontinence (55%), 10

participants with post-defecation soiling (13%) and two who had leakage of flatus or mucus

without faecal incontinence. Chart inspection identified twenty-two (29%) patients as having

had previous anal or bowel surgery at a median of 2.5 years before baseline and four (5%) had

surgery between baseline and the three-month follow-up. The median duration of a problem

with bowel control was 60 (IQR 25 – 75) weeks. Distribution of these data was skewed,

therefore a binary variable was created with the median duration of a bowel problem used to

divide patients into those with incontinence into a shorter or longer time. Sixty-four people

completed the second questionnaire three months later giving an 85% retention rate. There

were no differences in age, length of time with a bowel problem, severity of faecal

incontinence scores or disgust sensitivity between those who did and did not complete the

follow-up questionnaire.

Predictor Measures

Faecal incontinence symptom severity. The Fecal Incontinence Severity Index (FISI; 14) was

used to assess incontinence severity. This is a self-reported measure of severity of incontinence

based on four symptoms: leakage of gas; leakage of mucus; leakage of liquid stool; leakage of

solid stool. Symptoms are rated on a 6-point scale and weighted to give a maximum score of 62

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indicating the most severe impairment. The FISI relates well to surgeons ranking of severity

(15) and has been widely used (2, 16, 17). In the current study, total FISI scores were used, as

well as a dichotomous measure of faecal incontinence severity (low/high) based on a cut-off

point at the median (31.50).

Disgust sensitivity. Sensitivity to disgust was assessed using the Disgust Sensitivity-Revised

scale (DS-R) (18). This was a 27 item measure that asks participants to rate from 0 to 4 how

disgusting they find a variety of experiences, and how much they agree with a number of

behavioural responses to established elicitors. DS-R has been used in numerous studies (12, 19,

20), has good internal consistency, has demonstrated construct validity and predicts disgust-

generated avoidance behaviour (18, 20, 21). It can be divided into three subscales, animal-

reminder, contamination and core disgust. The total mean score provides an overall disgust

sensitivity score, with higher scores indicating greater disgust sensitivity. In the current study,

the DS-R total score had adequate internal consistency (Cronbach α = .88). Splits on this total

score at the median point (1.92) were used to categorize participants as low or high in total

disgust sensitivity.

Outcome Measures

Faecal incontinence specific quality of life. Participants completed the Fecal Incontinence

Quality of Life Scale (FI QLS; 22) which consists of one general question about health plus 26

items about the effect of accidental bowel leakage on aspects of daily life. Responses range

from 1 to 4 or not applicable. The scale can be divided into four subscales; lifestyle, self,

coping and embarrassment with higher scores indicating higher quality of life. In the current

study, the subscales had adequate internal consistency; lifestyle (α = .95), self (α = .89), coping

(α = .93) and embarrassment (α = .69).

General quality of life. The WHOQOL-Bref (23) is a 26 item general quality of life measure

and provides scores on four domains including physical health, psychological, social

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relationships and environment. The WHOQOL Bref is reliable (α = .92) and valid across

diverse diseases and has been specifically used in bowel illness populations (24). In the current

study, the subscales had adequate reliability: physical (α = .84), psychological (α = .85), social

(α = .66) and environmental (α = .83).

Statistical Analysis

Analyses began by assessing the relationship between study measures using Pearson

correlations. To investigate whether faecal incontinence severity and disgust sensitivity

predicted general- and incontinence-specific quality of life, a series of step-wise multiple

regression models was run on each of the WHOQOL-Bref and FI QLS sub-scales. As a first

step (Step 1), possible confounders were entered including age, sex, whether participants had

had previous surgery, length of time with bowel control problems and FISI scores, The total

variance explained by the model (R2 coefficient) and whether this was statistically significant

(F coefficient) was assessed. As a second step (Step 2) we entered disgust sensitivity. To

determine whether introduction of this variable improved the model’s ability to predict the

outcome, we assessed whether the R2 and FΔ coefficients were significant, indicating an

increase in the proportion of variance of QOL explained by the model. To test whether the

severity of symptoms predicted the outcome equivalently for those with greater or lower

disgust sensitivity, we entered the interaction between disgust and FISI as a third step (Step 3)

again to assess whether the model’s predictive ability was improved. Where interactions were

significant, plots were examined and additional independent t-test analyses conducted to

investigate the nature of interaction relationships.

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Results

Correlations between Study Measures

The severity of incontinence, as measured by the FISI score was inversely related to

incontinence-specific quality of life on the FI QLS lifestyle and self subscales (Table 1). It was

marginally related to coping, although not significantly to embarrassment. FISI scores were

also inversely related to the WHOQOL-Bref physical subscale and marginally, but not

significantly related to the environmental scale. Higher disgust sensitivity was marginally, but

not significantly related to poorer WHOQOL-Bref psychological scores. DS-R and FISI were

not associated with one another indicating they were measuring distinct constructs.

Disgust, symptom severity and quality of life

A summary of the three step models as described above is presented in Table 2.

First, predictors of general quality of life (WHOQOL-Bref subscales) were assessed. The

model investigating predictors of WHOQOL-Bref physical scores was not significant at Step 1

when possible covariates and FISI scores were entered, nor at Step 2 with the introduction of

disgust sensitivity. It became a significant predictor at Step 3 with the introduction of the FISI

and disgust interaction term (β =.36, p=.005).

Examination of the plot (Figure 1A) and additional independent t-test analyses revealed that,

in line with predictions, participants low in disgust sensitivity had high physical quality of life

when their incontinence severity was low (M=69.23, SD=21.26) but not when incontinence

severity was high (M=49.60, SD=19.48); t(28)=2.67, p=.012). In contrast, persons high in

disgust reported low physical quality of life regardless of whether their incontinence severity

was low (M=51.47, SD=18.77) or high (M=56.62, SD=15.61); t(31)=-.86, p=.397. Thus, whilst

there was no main effect for disgust, reported symptom severity interacted with disgust such

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that physical quality of life in persons low in disgust sensitivity intuitively reflected their

symptom load, whereas those high in disgust sensitivity had low quality of life regardless of

their physical symptoms.

The model investigating predictors of WHOQOL-Bref psychological scores was not significant

at Step 1. It was, however, significant at Step 2 with the addition of disgust (β =-.27, p=.035)

and improved further at Step 3 with the addition of the interaction term (β =.27, p=.030; refer

Fig. 1B). Individual predictors of WHOQOL-Bref social scores were not significant at any of

the Steps. The model investigating predictors of WHOQOL-Bref environmental scores was

significant at Step 1 with younger age (β =.33, p=.008), predicting lower environmental

quality of life; improved at Step 2 with the introduction of disgust scores (β =-.27, p=.033),

and improved further at Step 3 with the introduction of the interaction term (β =.23, p=.056;

Fig. 1C) where those with low FISI scores had lower quality of life with high disgust

(M=66.36, SD=14.60) than those with low disgust (M=79.08, SD=13.03).

The model investigating predictors of lifestyle scores was not significant at any of the steps,

although higher FISI scores predicted lower quality of life at all three steps (Step 1: β =-.32,

p=.020; Step 3: β =-.33, p=.019 Step 3: β =-.29, p=.041). The model investigating predictors

of the coping subscale was not significant at any of the Steps, but whilst the model

investigating predictors of the self subscale scores was not significant at Steps 1 or 2, it became

significant at Step 3 with the introduction of the interaction term (β =.29, p=.023; Fig. 1D).

Again, patients with low symptom severity had lower FI QLS self scores when disgust

sensitivity was high (M=2.38, SD=.68) compared with those with low sensitivity (M=3.03,

SD=.95). The model investigating predictors of embarrassment scores was not significant at

any of the Steps.

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Thus a high incontinence symptom severity score prospectively predicted low incontinence-

specific quality of life at three months, significantly predicting FIQLS lifestyle scores. High

FISI scores also marginally predicted low general quality of life (WHOQOL environmental

scores). Whilst disgust sensitivity did not predict any of the FI specific metrics on its own, it

was a predictor of general quality of life on the psychological and environmental domains,

and had a moderating influence on FISI scores, with only those low in disgust sensitivity

reporting higher quality of life when their symptoms were low. Conversely, those high in

disgust sensitivity had low quality of life regardless of their FISI scores.

Discussion

It is well established that faecal incontinence is detrimental to quality of life (2), but

predicting who will be most impaired is inexact. Despite the inherent logic, symptom severity

predicts quality of life only moderately and our results confirm the limitations of this

relationship. FISI score was a relatively weak predictor of quality of life scores and were only

significant in one of the eight outcomes we measured (FI QLS lifestyle). In contrast, disgust

sensitivity, alone and in conjunction with symptom severity, predicted between 5% and 14%

additional variance in the quality of life metrics and in several cases doubled the ability of the

models to predict outcome.

Perhaps most importantly, the current report highlights a new direction for research into the

person variables that predict poor adaptation to the symptoms of anal incontinence.

Sensitivity to disgust clearly matters, and whilst disgust did not prospectively predict quality

of life in its own right, its interaction with symptom severity is telling. Persons low in disgust

sensitivity follow a logical pattern; fewer symptoms predicted better quality of life three

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months later. In contrast persons high in disgust sensitivity had lower quality of life

regardless of whether anal incontinence symptoms were high or low.

In the absence of prior work, it is difficult to evaluate why this pattern was stronger

for general versus incontinence-specific quality of life. Potentially, the interaction between

disgust sensitivity and symptom severity plays out more strongly when people are asked to

think about their overall daily life than within the confines of a measure specific to their

illness. This complexity noted, the key contribution of this work is to highlight the likely

value of disgust as a predictor of quality of life amongst patients with anal incontinence.

The exact mechanism of how disgust might interactively predict quality of life

alongside symptom severity is unclear. It may be that disgust’s link to avoidance behaviour is

playing a role. Avoidance behaviour is commonplace amongst anal incontinence patients

with social isolation, curtailing outside home activities, and withdrawal from intimacy among

the most pressing concerns (3). Disgust appears to have a role in promoting social avoidance

when confronted with contamination threats (25). Given that a primary purpose of disgust is

to minimize exposure to potential contaminants, avoidant behaviour may become

differentially common among patients with greater disgust sensitivities when they are faced

with potential disgust triggers (e.g more severe incontinence). Emerging research reinforces

the link between disgust and avoidance in bowel health contexts (12) and this avoidance,

whilst useful at times, for example avoiding potential contaminants may, at others be

detrimental, for example avoiding medical care when treatments may potentially elicit

disgust (26). If disgust-driven avoidance promotes withdrawal from social support networks,

workplaces and health care utilisation, it will likely impact not only the physical and

psychological status of patients, but may also have a wider cost influence in our increasingly

economically-driven healthcare systems. Investigation of disgust’s influence on these

domains would be an obvious future direction for research.

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The clinical implications of disgust sensitivity as a moderator of outcome among anal

incontinence patients are also worth noting. Disgust has tended to be ‘the elephant in the

room’ for incontinence patients, support networks and medical staff alike. The very lack of

research in an area that seems so intuitively obvious bears witness to this. Thus, simply

opening a conversation about the possibility of disgust, acknowledging and normalizing it,

maintaining a willingness to discuss this ‘taboo’ subject, and noting the generally beneficial

effects of habituation over time may be therapy enough for some. However, for persons with

high sensitivity, more intensive support may be required. Identification of those patients

prone to disgust at an early stage in the treatment trajectory is an important first step but

further work is clearly needed. Empirical guidance on what clinical support might entail and

who might best deliver it would also help. Medical personnel have a unique opportunity at

the ‘coal face’ to initiate this therapeutic process, but apart from some preliminary studies

investigating possible applications of mindfulness in this area (27), there is little to guide this

work. Further research is warranted.

This study was limited by its cross-sectional design and modest sample size. Whilst

most participants had faecal incontinence there were two with only flatus or mucous

incontinence. Given these conditions may present distinct challenges, we ran alternative

analyses excluding those people with only flatus/mucous incontinence , but other than two of

the findings being marginalised (likely due to reduced power), no substantive differences in

the overall pattern of findings emerged. Additionally, whilst disgust was able to predict

prospectively variance in quality of life among anal incontinence patients, there are clearly

other factors at work. What these might have been requires further study. Culture, for

example, may have a bearing on the disgust experience and whilst faeces are almost

universally perceived as ‘disgusting’ (28) cultural variation in the elicitors of disgust in

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medical examination and treatment contexts appears likely and is certainly worthy of further

attention.

Although surgery was not a predictor of quality of life in this study, it may be that recent

surgery does influence quality of life, at least in the short term. As above, we re-ran analyses

excluding the four patients who had surgery performed between the baseline and the 3-month

time-point and, other than a loss of power, the pattern of results was unchanged. Lastly if, as

we suggest, disgust-generated avoidance is a factor in anal incontinence, then those most

affected by disgust may have been the least likely to take part in a study requiring detailed

introspection and rating about the bowel condition. It is unclear how this issue might be best

managed in future studies.

This study highlights the importance of considering factors other than functional status in the

quality of life of patients dealing with anal incontinence. Disgust has an intuitively obvious

role, which has been borne out by our findings. Having the ability to predict better those who

might adjust with relative ease and those who might struggle with aversive bowel symptoms

provides clinicians with an additional tool to target supportive and early intervention. With

this in mind, sensitivity to disgust warrants further attention.

Acknowledgements

This research could not have been conducted without the generosity of our participants and

the support of the Auckland District Health Board and the medical and administrative staff of

the Pelvic Floor Clinic. We also thank Katie Simpson for her assistance with this research.

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Legends to illustrations

Table 1 Pearson correlations, means and standard deviations of measures

Table 2 Step-wise multiple regression: Final (Step 3) models showing predictors of general

and specific quality of life.

Figure 1 Quality of life scores as a function of disgust sensitivity (DS-R) and faecal

incontinence severity index (FISI) with standard error bars.

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Table 1 Pearson correlations, means and standard deviations of measures

Measure Mean SD DS-R FISI

Time 1 Predictors

DS-R 1.91 0.68 0.01

FISI 32.80 13.91

Time 2 Outcome Measures

WHOQOL-Bref subscales:

Physical 55.84 19.73 -0.06 -0.26*

Psychological 59.43 16.66 -0.23+

-0.20

Social 68.52 20.52 -0.12 -0.07

Environmental 69.86 16.04 -0.20 -0.22+

FI QLS subscales:

Lifestyle 2.84 0.82 -0.09 -0.34**

Coping 2.14 0.76 -0.10 -0.23+

Self 2.58 0.82 -0.22+

-0.27*

Embarrassment 2.10 0.93 -0.07 -0.14

+ p < .10; *p < .05; **p < .01

DS-R disgust sensitivity

FISI fecal incontinence severity index

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Table 2 Step-wise multiple regression: Final (Step 3) models showing predictors of general

and specific quality of life

FI QLS subscales WHOQOL-Bref subscales

Variable

(β) Lifes

tyle

Co

ping

Self

Embarr

assme

nt

Physi

cal

Psyc

holo

gical

Socia

l

Envir

onme

ntal

Age 0.05 -

0.01 0.15 0.08 -0.04

0.21+

0.27*

0.32*

*

Prior

surgery

-

0.06

-

0.01

-

0.08 0.02 0.03 0.14

-

0.10 0.18

Time of

incontinen

ce

-

0.09

-

0.02

-

0.14 0.02 -0.21

-

0.20

-

0.03 -0.10

FISI -

0.29*

-

0.21

-

0.19

-

0.16 -0.17

-

0.13

-

0.06

-

0.22+

Disgust

sensitivit

y

-

0.07

-

0.12

-

0.20

-

0.09 -0.07

-

0.28

*

-

0.10

-

0.27*

FISI x

Disgust 0.21 0.21

0.29*

0.05 0.36*

* 0.27*

0.15 0.23+

Step 1

model:R2

0.12 0.06 0.11 0.03 0.10 0.12 0.09 0.19

1.98 0.88 1.79 0.42 1.61 2.01 1.41 3.41*

Step 2

model:R2

(∆R2)

0.13

(0.0

1)

0.07

(0.0

1)

0.15

(0.0

3)

0.04

(0.0

1)

0.11

(0.00

)

0.20

(0.0

7)

0.10

(0.0

1)

0.26

(0.06

)

1.63

(0.3

0)

0.85

(0.7

7)

1.91

(2.2

2)

0.41

(0.4

0)

1.32

(0.25

)

2.65

*(4.6

9*)

1.22

(0.5

2)

3.87*

*(4.8

0*)

Step 3

Model:R2

(∆R2)

0.17

(0.0

4)

0.11

(0.0

4)

0.22

(0.0

8)

0.04

(0.0

0)

0.23

(0.14

)

0.26

(0.0

7)

0.12

(0.0

2)

0.31

(0.05

)

1.85

(2.7

2)

1.16

(2.5

4)

2.62

*(5.4

3*)

0.36

(0.1

4)

2.66*(

8.46**

)

3.20

**(4.

99*)

1.25

(1.3

5)

4.02*

*(3.8

0+)

+p< .10; *p< .05; **p< .01

FI QLS Fecal incontinence quality of life score

WHOQOL-Bref World Health Organisation quality of Life-BREF

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