Diseases of the

Volume Number

42 CozoN RecrvM 12
DECEMBER 1999
ORIGINAL CONTRIBUTIONS

Patient and Surgeon Ranking of the

Severity of Symptoms Associated with
Fecal Incontinence
The Fecal Incontinence Severity Index
Todd H. Rockwood, Ph.D.,* James M. Church, M.D.,-~James W. Fleshman, M.D.,:}
Robert L. Kane, M.D.,* Constantinos Mavrantonis, M.D.,$ Alan G. Thorson, M.D.,[]
Steven D. Wexner, M.D.,q] Donna Bliss, R.N., Ph.D.,# Ann C. Lowry, M.D.,**
From the *Clinical Outcomes Research Center, University of Minnesota, Minneapolis, Minnesota,
tDepartment of Colon and Rectal Surgery, Cleveland Clinic, Cleveland, Ohio, }Division of Colon and Rectal
Surgery, Barnes Jewish Hospital, St. Louis, Missouri, §Department of Colon and Rectal Surgery, Cleveland
Clinic .Florida, Ft. Lauderdale, Florida, ]]Division of Colon and Rectal Surgery, Creighton University, Omaha,
Nebraska, q[Division of Colon and Rectal Surgery, University of Minnesota, Minneapolis, Minnesota, #School
of Nursing, University of Minnesota, Minneapolis, Minnesota, and **Department of Surgery, University of
Minnesota, Minneapolis, Minnesota

PURPOSE: The purpose of this research was to develop and
evaluate a severity rating score for fecal incontinence, the
Fecal Incontinence Severity Index. METHODS: The Fecal
Incontinence Severity Index is based on a type × frequency
matrix. The matrix includes four types of leakage com-
monly found in the fecal incontinent population: gas, mu-
cus, and liquid and solid stool and five frequencies: one to
three times per month, once per week, twice per week,
once per day, and twice per day. The Fecal Incontinence
Severity Index was developed using both colon and rectal
surgeons and patient input for the specification of the
weighting scores. RESULTS: Surgeons and patients had very
similar weightings for each of the type × frequency com-
binations; significant differences occurred for only 3 of the
20 different weights. The Fecal Incontinence Severity Index
score of a group of patients with fecal incontinence (N =
118) demonstrated significant correlations with three of the
four scales found in a fecal incontinence quality-of-life scale.
CONCLUSIONS: Evaluation of the Fecal Incontinence Sever-
Supported by a contract between the Universityof Minnesota Clin-
ical Outcomes Research Center and The American Society of Colon
and Rectal SurgeW and the Minnesota Coton and Rectal Founda-
tion.
No reprints are available.
1525
ity Index indicates that the index is a tool that can be used
to assess severity of fecal incontinence. Overall, patient and
surgeon ratings of severity are similar, with minor differ-
ences associated with the accidental loss of solid stool. [Key
words: Fecal incontinence; Health surveys; Outcome assess-
ment (health care); Severity of illness index]
Rockwood TH, Church JM, Fleshman J~', Kane RL, Mavran-
tonis C, Thorson AG, Wexner SD, Bliss D, LowIT AC. Patient
and surgeon ranking of the severity of symptoms associated
with fecal incontinence: the fecal incontinence severity
index. Dis Colon Rectum 1999;42:1525-1532.
A f u n d a m e n t a l issue related to the successful study
of o u t c o m e s is the identification of the severity
of a condition. Severity m e a s u r e s are i m p o r t a n t in
establishing the c o m p a r a b i l i t y of patients in o r d e r to
assess the effectiveness of alternative m e t h o d s of
treatment. 1 The goal of this research was to d e v e l o p
a n d evaluate a severity i n d e x for fecal i n c o n t i n e n c e
(FD. T h e f u n d a m e n t a l strength o f s u c h a tool is to
allow for a s s e s s m e n t o f severity i n d e p e n d e n t o f direct
clinical observations; thus, a s s e s s m e n t c a n b e d o n e at
1526 ROCKWOOD ETAL
any time and provide a cost-effective means of mon-
itoring the severity of a patient's status w-ithout direct
clinician contact.
For m a n y conditions, objective data may be used to
assess severity. The DeMeester Score relies on data
from 24-hour patient monitoring. 2 Although there are
numerous physiologic measurements used for incon-
tinence, none have b e e n shown to reflect severity or
response to therapy accurately. 3 As a group patients
with FI have lower manometric pressures than con-
trols~ but there is significant overlap. In addition, a
worsening clinical status is not always associated with
decreasing pressures. 4, 5 Pudendal nerve terminal mo-
tor latency has not b e e n shown to correlate with
manometric pressures or clinical status. 6 There is con-
troversy over whether pudendal nerve terminal motor
latency status is predictive of outcome after sphincter
repair. 7 Anal ultrasound reliably detects sphincter de-
fects. The presence of a defect correlates with mano-
metric pressures but not clinical function. 8
Patient history is thus the best w a y to estimate
severity of fecal incontinence. One approach would
be to record each patient's experience descriptively,
but that information is difficult to use for comparison.
Numerous scoring or grading systems are present in
the literature. 9-2° A n u m b e r of systems include only
the consistency of the leakage, ignoring the frequency
of occurrence. Those scales sacrifice discriminatory
p o w e r for simplicity. Other scales mix historical data
with data from physical examination or testing. 14, 15
The numerical values assigned each data point seem
to have b e e n chosen arbitrarily.
Other scales mix lifestyle issues with type and fre-
quency.~7, ~9 Although quality of life (QOL) instru-
ments are related to severity, they are designed to
measure the impact of a given condition on a patient's
life. Intuitively, the more severe the condition is, the
more impact it will have on QOL. Therefore, the two
measures should be correlated. However, QOL instru-
ments measure different aspects of a patient's condi-
tion and should not be considered a direct indicator of
severity, because they do not assess the same thing
(i.e., the same level of severity can affect different
patients in dissimilar ways).
To our knowledge n o n e of the scales have b e e n
tested or c o m p a r e d with other measures (convergent
validity analysis). The lack of a standard, validated,
severity measure makes comparison of patients and
the outcomes of treatment modalities difficult. The
goal of this research was to develop a severity mea-
sure for fecal incontinence, the Fecal Incontinence
Dis Colon Rectum, December 1999
Severity Index (FISI). The initial step was to explore
surgeon and patient severity~rankings of various com-
ponents of FI and to provide a logical basis for the
assigned severity score. The basic c o m p o n e n t s of the
FISI include the type of incontinence (gas, mucus,
liquid, or solid) and the frequency of occurrence.
Information on these topics is invariably obtained
through a self-report, whether during a clinical assess-
ment or a patient self-report done outside of the
clinical setting.
PATIENTS AND METHODS
Study Design
A type × frequency matrix was developed based
on the components of fecal incontinence. The focus
was on four types of incontinence: gas, mucus, and
liquid and solid stool. The frequency dimension used
five time frames: two or m o r e times per day, once per
day, two or more times per week, once per week, and
one to three times per month. Figure 1 A illustrates the
matrix that was presented to the participants.
Participants in the research were given the 20-cell
table shown in Figure 1 A and instructed to rank the
severity of the items relative to each other, assigning
a "1" to the most severe cell in the table and a "20" to
the least severe. The participants were instructed not
to use tie scores The type × frequency- matrix was
administered to both surgeons and patients. A total of
26 colon and rectal surgeons completed the form. All
of these were conducted in person, in a focus-group
type of setting. A total of 34 patients completed the
form. Twelve of these were conducted through the
mail and the additional 22 were completed by pa-
tients in a colon and rectal surgery clinic (Minneapo-
lis, MN). Analysis of the two separate patient groups
demonstrated no significant differences b e t w e e n their
rankings; these data have b e e n pooled for the analy-
sis.
Using patient and surgeon ratings, separate severity
weighting systems were developed. One was based
on patient ratings and one on surgeon ratings. The
mean value for each of the 20 ceils s h o w n in Figure 1
was calculated. This m e a n value provides the weight-
ing of each type × frequency toward the overall
severity score. (Table 1 gives the resultant cell-by-cell
weighting scores for both patients and surgeons. Note
that for calculation of the FISI scores, the original
responses have b e e n reverse coded so that a higher
score indicates greater severity, e.g., 1 = least severe
condition and 20 = most severe condition.)
Vol. 42, No. 12 FECAL INCONTINENCESEVERITYINDEX 1527

A
2 or More Once a 2 or More Once a 1 to 3 Times
Times a Day Day Times a Week Week A Month
Gas

Mucus

Liquid

Solid

B
2 or More Once a 2 or More Once a 1 to 3 Times
Times a Day Day Times a Week Week A Month Never
a. Gas [] [] [] [] [] []
.............................................................................................................................................................................................................

b. Mucus [] [] [] [] [] []

c. Liquid Stool [] [] [] [] [] []

d Solid Stool [] [] [] [] [] []

Figure 1. Fecal Incontinence Severity Index. A, Event × frequency matrix presented to surgeons and patients to
develop weightings and overall severity score. Participants were instructed to rank the importance of each cell by
placing a "1" in the most severe cell and a "20" in the least severe cell. B. Fecal Incontinence Severity Index Question.
Presented to the fecal incontinence study population, the question asked, "For each of the following, please indicate
on average how often in the past month you experienced any amount of accidental bowel leakage: (Check only one box
per row.)"

Table 1.
Surgeon and Patient Ratings of Fecal Incontinence
Two or More Two or More One to Three
Once per Day Once per Week
Times per Day Times per Week Times per Month

Patient Surgeon Patient Surgeon Patient Surgeon Patient Surgeon Patient Surgeon
Gas 12/5.7 9/4.7 11/4.6 8/4.5 8/3.9 6/4.6 6/3.2 4/4.9 4/3.3 2/3.9
Mucus 12/5.6 11/3.8 10/4.6 9/3.2 7/3.8 7/2.1 5/3.1 7/3.7 3/3.0 5/4.6
Liquid 19/1.9 18/3.6 17/2.4 16/2.8 13/3.3 14/2.7 10/3.7 13/3.0 8/4.1 10/4.1
Solid 18/2.7 19/3.8 16/2.4 17/3.4 13/2.1" 16/3.2 10/2.7" 14/2.9 8/3.1" 11/3.7
Figures are mean/standard deviation. Note for calculation of the Fecal Incontinence Severity Index scores that the
original responses have been reverse coded so that a higher score indicates greater severity, e.g., 1 = least severe
condition and 20 = most severe condition.
* Indicates significant difference at the .01 level (Bonferroni adjusted t-test of means).

The following is an example illustrating h o w the manner: gas once per day, +8; mucus leakage never,
FISI is calculated: +0; liquid stool loss once per week, +13; solid stool
Patient A reported the following: gas once per day, loss 1-3 times per month, +11; for a total FISI score of
mucus leakage never, liquid stool loss once per week, 32. Using the patient ratings from Table 1, the FISI score
and solid stool loss one to three times per month. would be: gas once a day, +11; mucus leakage never,
Taking the surgeon weighting scores from Table 1, ÷0; liquid stool loss once a week, +10; solid stool loss
their FISI score would be determined in the following 1-3 times a month, +8; for a total FISI score of 29.
1528 ROCKWOOD ETAL Dis Colon Rectum, December 1999

To evaluate the FISI, data from another study on an The second analysis sought to evaluate whether or
FI patient population was also used. In that study 118 not the rankings of one group (patient or surgeons)
people with FI were surveyed and patients reported better predicts patient QOL by comparing the Pearson
the frequency of incontinence they were experienc- correlation of both the patient and surgeon rankings
ing. 21 This survey included the question presented in with each of the four FIQL scale scores. Finally, the
Figure 1 B. The data on the frequency of occurrence for sensitivity of using one or the other ranking was
each of the types of leakage given in this self-report tested by comparing the scores generated for hypo-
were used to calculate each patient's severity score. thetical patients.
Another data source from this study that will be
used is the quality-of-life scales in the Fecal Inconti- RESULTS
nence Quality of Life scale (FIQL).is These scales
were used to test how well the FISI scores correlated The rankings for the surgeons and patients corre-
with measures of fecal incontinence--specific quality- late very highly (r = 0.97; Fig. 2). Nonetheless, the
of-life measures. surgeons and patients differ in the relative importance
they place on some elements used to calculate the
Analysis FISI score. Table 1 presents the results of the analysis
that compares the mean rankings assigned to each of
Evaluation of the severity rankings used two sepa- the cells by the surgeons and patients. Overall, pa-
rate analyses. The first directly compared the weight- tients and surgeons demonstrated consistency- in their
ings of the surgeons and patients to determine severity rankings. As shown in Table 1, the weighting
whether there were differences between them in their given by patients and surgeons were significantly dif-
ranking of the severity of Ft. Two approaches were ferent in only three of the twenty cells (Bonferroni
used for this analysis. First, a Pearson correlation adjusted 1-test of means). Surgeons assigned more
examined the extent of agreement in the rankings weight (severity) to infrequent episodes of solid stool
between patients and surgeons. Second, the mean incontinence than patients.
ranking of each cell in the table presented in Figure 1 Because the rankings by each group for liquid and
A was compared using a t-test of means. solid stools and for gas and mucus were essentially

70 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

R2 = 0,9663
60

50

t-
40
O

GO
30

20
0

10

i i i

0 10 20 30 40 50 6O 70
Patient
Figure 2. Comparison of patient and surgeon severity ratings.
Vol. 42, No. 12 FECAL INCONTINENCE SEVERITYINDEX 1529

the same, in seemed reasonable to collapse these into direction, did not demonstrate significant correlations
two types of discharge: liquid or solid stool and gas or with the severity scores.
mucus. Figure 3 compares the rankings for the col-
lapsed event types. There are no significant differ-
DISCUSSION
ences for the Gas/Mucus combinations, but as ex-
pected three of the Liquid/Stool combinations
The goal of this research was to evaluate a scheme
demonstrate significant differences: one to three times
to assess the severity of FI. The findings from this
per month, once per week, and twice per week (Bon-
preliminary research reveal a general pattern of sim-
ferroni adjusted t-test of means).
ilarities with a few differences in h o w patients and
surgeons rank the severity. The primary difference
Correlation of Severity and Quality of Life occurs in the ranking of infrequent leakage of solid
stool, which the surgeons rank as being more severe.
The correlation between each of the four FIQL Although these differences do exist, there is no sig-
scale scores and the severity weights generated from nificant gain from using one set of rankings over the
each of the two sources (patient and surgeons) for the other in the prediction of a patient's self-reported
weightings is shown in Table 2. The correlations be- QOL.
tween the severity weights and the scales from the The fact that the two respondent groups agreed in
FIQL are similar for patients and surgeons for each of the majority of cases is encouraging. The discrepan-
the four scales. Three of the scales demonstrate sig- cies reflect the interpretation each group places on
nificant correlations with both the surgeon and pa- the different types of incontinence. A real difference
tient severity scores: Lifestyle, Coping/Behavior, and in perception is shown by the surgeons putting
Embarrassment ( P < 0.05). The Depression/Self-Per- greater importance on incontinence of solid stool
ception scale, although correlated in the expected than patients did. The surgeons are more likely to

Gas/Mucus 1-3x Month

Gas/Mucus lx Week ~ l,,t~,t/ ~:t I?

~,,,:~~ ' ~Bi~

Gas/Mucus 2x Week ~ [:J ~,tmH~;~ ~{~Btttt~@g@t ~1!,~

Gas/Mucus lx Day t~IFII~I/@

*Liquid/Solid 1-3x Month ~I~'~,~:~@~ ~#~@~t~~

*Liquid/Solid 2x Week

Liquid/Solid lx Day ~ ~ ~ ~'~ ....... ~'~ . . . . ~!~'~ l" ~

Liquid/Solid 2x Day t~M'~!ttt~ t~t~t ~ . ~ ,, @ ~ % q ~

I I I I I I I

0 2 4 6 8 10 12 14 16 18 20
] [] Patient • Surgeon I Less More
Severity
Figure 3. Comparison of surgeon and patient ratings of fecal incontinence. Combining Gas/Mucus and Liquid/Solid
categories, higher score indicates greater severity. * = significant difference, Bonferroni adjusted t-test of means.
1530 ROCKWOOD E T A L
Table 2.
Surgeon and Patient Severity Ratings Correlation with Fecal Incontinence Quality of Life (FiQL) Scales
Coping/
Rating Lifestyle Behavior
Patient -.45~ -.29"
Surgeon -.44~ -.32*
Figures are Pearson correlation coefficients. Note that severity score and FIQL scale scoring run in opposite
directions; a higher rating indicates more severe fecal incontinence, whereas for the FiQL scales a higher score
indicates a higher functional status or quality of life.
* Significant at P < .05.
1 Significant at P < .01.
emphasize a physiological interpretation of events,
whereas patients are more conscious of leakage that
can affect personal hygiene and provoke social em-
barrassment. Surgeons view solid stool loss as reflec-
tions of sphincter integrity and the adequacy of sur-
gical repairs.
The question then becomes how- important the
differences are between the two groups in producing
different levels of overall severity. As noted earlier,
either weighting source produces scores that are sig-
nificantly correlated with three of the four QOL mea-
suresY The score for an individual patient might vary
depending on whether surgeon or patient rankings
were used. The extent of the effect of using different
weighting sources at a patient level can be appreci-
ated from the following example: Patient 1 reported
the following: gas two or more times per day (patient
weight, 12; surgeon weight, 9), mucus two or more
times per week (patient weight, 7; surgeon weight, 7),
solid stools once per day (patient weight, 16; surgeon
weight, 17); thus, Patient l's severity score based on
the patient rankings is 35 and based on the surgeon
rankings is 33. Patient 2 had gas one to three times per
month (patient weight, 4; surgeon weight, 2), mucus
once per week (patient weight, 5; surgeon weight, 7),
liquid stools once per w e e k (patient weight, 10; sur-
geon weight, 12), and no solid stool loss; the severity
score based on patient weightings would be 19 and
based on surgeon weightings would be 22.
Although the differences between the two groups
(patients and surgeons) are not great, they can pro-
duce slightly different results. The magnitude of the
difference will depend on the underlying frequency
of the type of FI problem in a given sample of pa-
tients. Patients able to control stool but not flatus or
mucus will receive higher scores w h e n the patient
ratings are used. It is unclear how important these
differences are clinically.
This pattern of modest differences in the impor-
Dis Colon Rectum, December 1999
Depression/ Embarrassment
Self-Perception
-.20 -.381"
-.23 -.391"
tance assigned by professionals and consumers has
been seen in other contexts. In a study examining the
relative importance ratings of activities of daily living,
professionals tended to assign higher value to more
severe elements, whereas consumers placed higher
importance on the more common events. 22
In the end, the choice of which rating group to use
as the criterion standard may d e p e n d on what out-
come is being emphasized. In the context of an eval-
uation of surgical success, the surgeon weightings
make more sense, because they reflect sphincter com-
petence. Gas and mucus production are less likely to
be sensitive to surgical intervention. However, from
the perspective of patient satisfaction with the result,
these elements have high salience.
Further research is necessary to confirm these find-
ings and test both the surgeon and patient weightings
in clinical settings. If the significant differences be-
tween patients and surgeons persist, ultimately a
choice of which perspective to use as a standard will
need to be made or both scores will need to be
reported. Further work is also necessary to unde>
stand whether combining the categories of gas and
mucus and of liquid and solid stool is useful. Finally,
the details of assigning specific weighting scores need
further resolution.
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Invited Editorial
To the Editor--The study b y Rockwood and co-
workers is a w e l c o m e addition to the literature on the
quantitative assessment of fecal incontinence using a
scoring system. There is no doubting the n e e d for an
internationally agreed scoring system for fecal incon-
tinence to allow- comparisons b e t w e e n patient p o p u -
lations and outcomes of medical and surgical treat-
ment. Such a goal has b e e n achieved for urinary
incontinence through the International Continence
Society, but this b o d y is mainly the preserve of urol-
ogists and urogynecologists. A similar grouping with
representatives from colorectal surgery, gastroenter-
ology and associated specialists would be helpful.
Agreeing a universal scoring system should be possi-
ble, but from w h o s e perspective should the system be
created, the patients' or the surgeons'?
Rockwood and colleagues first of all constructed a
chart with four types of incontinence and five fre-
quencies, from twice per day up to one to three times
per month. The 20 cells could then be weighted 1 to
20 b y a group of patients and colorectal surgeons.
Slightly confusingly, they adopted the convention of
the lowest score "1" for the most severe symptoms
and the highest "20" for the least severe. Although this
score has b e e n inverted to make the highest value the
worst incontinence in the final calculation of severity,
the patients participating in the original ranking exer-
cise might have found this off-putting. The m e a n
score for each cell was then calo.llated for patients
and surgeons, and on the whole there was a g o o d
correlation. Interestingly, patients were m o r e con-
cerned about frequent episodes of gas incontinence,
whereas surgeons ranked less frequent episodes of
solid stool more severely. It is a pity that the authors
did not look at urgency in a similar way. Patients
report urgency and the uncertainty that accompanies
it an important and troublesome s y m p t o m in ulcer-
ative colitis and incontinence.
They then went on to compare their n e w Fecal
Incontinence Severity Index with an as yet unpub-
lished but validated Fecal Incontinence Quality of Life
scale, and there was a similarly g o o d correlation. In
discussion they did not r e c o m m e n d which rankings
should be used, because it is d e a r that m u c h d e p e n d s
on what is being a s s e s s e d - - s u r g e o n s look with the
results of surgery in mind, are less able to achieve