Validation of the Baylor Continence Scale in children - ResearchGate

Journal of Pediatric Surgery (2007) 42, 1015–1021
www.elsevier.com/locate/jpedsurg
Validation of the Baylor Continence Scale in children
with anorectal malformations
Mary L. Brandt a, *, Carolyn Daigneau a , Edward A. Graviss b , Bindi Naik-Mathuria a ,
Megan E. Fitch a , Kimberly K. Washburn a
a Michael E. DeBakey Department of Surgery, Baylor College of Medicine, Houston, TX 77030, USA
b Department of Pathology, Baylor College of Medicine, Houston, TX 77030, USA
Index words:
Anorectal malformations;
Quality of life;
Continence
Abstract
Background: Anorectal malformations (ARMs) often result in lifelong problems with defecation. There
have been no studies performed to develop scoring systems in children with fecal incontinence
following repair of ARM. This study was designed to develop and validate a tool (Baylor Continence
Scale [BCS]) to measure social continence in children after surgical correction of ARMs.
Methods: The BCS, a 23-question survey, was administered to children who have had repair of an
ARM, children with enuresis, and normal children.
Results: Children in the ARM group had an average BCS score of 28.0, which was statistically different
from an enuresis control group (16.5) and normal controls (11.5) ( P b .05). A significantly greater
proportion of children in the ARM group had higher Impact on Family Scores (N30) than either the
enuresis or normal control group ( P b .05).
Conclusions: The BCS tool should be useful in prospective studies of interventions to improve
incontinence after repair of an ARM. An important secondary result of this study was to demonstrate the
effect on families of caring for a child with imperforate anus, even years after the repair.
D 2007 Elsevier Inc. All rights reserved.
Anorectal malformations (ARM) are uncommon congenital
defects, occurring approximately 1 in 5000 live
births. These anomalies occur in a spectrum of severity
depending on the level of the defect, the presence of a fistula
to the urinary system or vagina, and the presence of
associated sacral deformities. All patients, regardless of
the severity of the initial malformation, have lifelong
problems with defecation and consequently can have great
social and physical morbidity [1-6].
Papers presented at the 58th Annual Meeting of the Section on Surgery
of the American Academy of Pediatrics.
* Corresponding author. Division of Pediatric Surgery, Texas Children’s
Hospital, 6621 Fannin CCC 650.000, Houston, TX 77030, USA. Tel.:
+1 832 822 3135.
E-mail address: brandt@bcm.edu (M.L. Brandt).
Most problems experienced after repair of an imperforate
anus are with defecation. Previous reports have shown
that postoperative constipation occurs in 15% to 61% of
patients [7]. At the other end of the spectrum, anywhere
from 0% to 100% of children will have frank incontinence
after imperforate anus repair [7]. Outcome studies in
children with ARMs have been traditionally based on
subjective analysis of stool function. Patients are usually
ranked by either the surgeon or the parents into 3 groups
such as excellent, good, and fair [7,8]. Scales have been
developed to objectively evaluate stool function in children
but are primarily used to assess children with encopresis
[9]. Encopresis is leakage of stool in an anatomically
normal child, which often has a psychological etiology.
Fecal incontinence, such as that seen after ARM repair,
0022-3468/$ – see front matter D 2007 Elsevier Inc. All rights reserved.
doi:10.1016/j.jpedsurg.2007.01.070

1016
differs significantly from encopresis, primarily from the
standpoint of underlying anatomic abnormalities. This
distinction is important because most research instruments
used to study bowel function in children stress the
psychological aspects of incontinence. Although fecal
incontinence scoring systems have been described in adults
with anatomic fecal incontinence, there have been no
studies performed to develop similar scoring systems in
children with fecal incontinence owing to ARMs [10-13].
This study was designed to develop and validate a tool to
measure social continence in children after surgical
correction of ARMs. In addition, we sought to evaluate
quality of life (QOL) and the impact on a family of caring
for a child with an ARM.
1. Methods
Based on statistical calculations, it was determined that a
sample size of 34 would have 80% power to detect an effect
size of 0.7 using a 2-group t test with a .05 2-sided
significance level. Patients less than 18 years of age with an
imperforate anus who had previously undergone anorectoplasty
and colostomy closure (if a colostomy was performed)
were recruited from the ARM clinic. In addition to
parental or guardian consent, subject assent was obtained
from all children more than 14 years of age. Two control
groups were recruited as well. Normal controls (n = 21)
were recruited from patients with no history of urinary or
fecal problems who were undergoing inguinal hernia repair.
The second control group (n = 22) was recruited from
patients seen in the urology clinic at Texas Children’s
Hospital for enuresis. These patients had no history of fecal
problems or previous abdominal or pelvic surgery. The
control groups had no difference in average age or sex. This
study was approved by the Baylor College of Medicine
Institutional Review Board (H-11746).
The Baylor Social Continence Scale (BCS) was designed
based on 23 questions answered using a psychometric
response Likert scale, whereby respondents specified their
level of agreement with the question asked in the survey
(Appendix A). These questions were designed based on the
clinical experience of the senior author, as well as published
continence scores used in children with encopresis and
adults with incontinence. The BCS scores range from 2 to
84, with the lower scores reflecting better social continence.
The BCS was filled out by each family at the time of
enrollment. Demographic information, details of the anatomic
defect, and surgical technique were collected and
recorded. In addition, each family filled out age-appropriate
QOL questionnaires as listed below:
1. The Piers-Harris Children’s Self-Concept Scale is a 60-
item, yes-no, self-reporting inventory designed to assess
how children and adolescents view themselves [16]. The
scale was designed to be used by children and
adolescents 7 to 18 years old. Cluster scales are included
for 6 domains: behavior, intellectual and school status,
physical appearance, anxiety, popularity, and happiness.
The full scale and cluster scores have mean scores F SD
of 50 F 10. Higher scores indicate a higher self-concept.
2. The Child Health Questionnaire (CHQ) is a generic
QOL instrument that has been designed to capture the
physical and psychological well being of children
independently from the underlying disease. The instrument
is available in 2 forms: parent report (to assess
children 5 years and older) and youth report (to assess
children at least 10 years old). The CHQ measures 14
unique physical and psychosocial health concepts that
can be analyzed and reported separately (CHQ Profile
Scores) or combined to derive an overall physical score
and a psychosocial score (CHQ Summary Scores).
3. The Impact on Family Scale is a 33-item scale designed
to measure the impact of a child’s chronic illness or
disability on the family as perceived by the primary
caregiver. The scale has 4 dimensions: financial, social/
familial, personal strain, and mastery. Responses to each
item are given on a 4-point Likert scale (strongly agree to
strongly disagree). Higher scores indicate more negative
impact on the family from the affected child’s disability.
Wilcoxon nonparametric statistics were used to examine
differences in social continence, self-esteem, QOL, and
impact of a chronic illness on the family in children with
ARMs compared with the control groups. Pearson correlations
was used to examine the relationships among selfesteem,
QOL, impact on the family, and degree of social
continence. Linear regression analysis was used to examine
the Baylor Social Continence questions. Nonparametric and
regression analyses were performed using SAS 9.1 (Cary,
NC), whereas Microsoft Office Excel 2003 (Redmond,
Wash) was used for summary statistics. v 2 analysis (or
Fisher’s Exact test when appropriate) was used for proportional
comparisons. In all analyses and modeling procedures,
P values V 0.05 were considered statistically significant.
2. Results
2.1. Demographic and surgical history
M.L. Brandt et al.
At the time of enrollment, the average age of patients in
the ARM group was 6 years (range, 5 months-20 years).
Fifty-six percent of patients were male. There were 24
(71%) patients who had intermediate or high procedures
(fistulae to the urinary system, vagina, or fourchette). Of 35
patients, 7 (20%) had low defects (no fistula or perineal
fistulae). The defect was unknown in 3 patients (8%).
2.2. Baylor Social Continence Score results
Children in the ARM group had an average BCS score of
28.0 (range, 2-56; median, 29), which was statistically

Validation of the Baylor Continence Scale in children with anorectal malformations 1017
Table 1 Baylor social continence score results
BCS (23 questions) BCS (6 questions)
ARM group total 28 (2-56) 8.8 (0-18)
ARM, high 28.29 (3-56) 8.04 (0-18)
ARM, low 32.75 (19-41) 11.7 (7-15)
Enuresis control
group
16.5 (3-54);
P = .0009
4.2 (0-21);
P = .0005
Normal control
group
11.7 (0-29);
P = .0001
2.2 (0-11);
P = .0001
different from the enuresis control group (average score,
16.5; range, 3-54; median, 12; P = .0009) and the normal
control group (average score, 11.7; range, 0-29; median, 10;
P = .0001) (Table 1). There was no difference in scores
between children with low lesions (average, 32.75) and high
lesions (average, 28.89) ( P = .76).
To determine if a subset of questions was as effective as
all 23 questions, 2 different regression modeling procedures
were used to identify which questions had the most impact
in differentiating the ARM group from the control groups.
These analytic procedures included using the goodness of fit
summary measure (R 2 ) and stepwise regression. Single
questions having a Pearson correlation probability of 0.15 or
less were selected and added to the regression model. The
questions chosen for the final model were selected based on
an R 2 of 0.90 or greater. Based on this analysis, 6 questions
were determined to be the most effective in measuring the
social continence score for subjects with ARM. These
questions were defined as the Abbreviated Baylor Social
Continence Scale (Appendix B). A second analysis was
carried out using only these 6 questions. When these 6
questions were used, children in the ARM group had an
average BCS score of 8.8 (range, 0-18; median, 9.5), which
was statistically different from the enuresis control group
(average score, 4.2; range, 0-21; median, 2.5; P = .0005)
and the normal control group (average score, 2.2; range, 0-
11; median, 0; P = .0001). With the use of these 6 questions,
there was no difference in scores between children with low
lesions (average, 11.7) and children with high lesions
(average, 8.04) ( P = .881) (Table 1).
Table 2
Piers-Harris questionnaire results
ARM
(n = 10)
Enuresis
control
(n = 6)
Normal
control
(n = 3)
Overall score 56.8 65.67 80
Behavior 52 50.33 62
Intellectual and 52.4 52.33 56.67
school status
Physical appearance 48 52.33 56.67
Anxiety 52.5 52.5 55.33
Popularity 47.6 50.83 52.67
Happiness 49.5 49 59
Questionnaire was answered by children and adolescents 7 to
18 years old.
Table 3 Child Health Questionnaire results: child self report
(children N10)
ARM
(n = 8)
2.3. Quality of life score results
Enuresis
control
(n = 2)
Normal
control
(n = 2)
Global health 80 85 100
Physical functioning 92.88 98.4 90
Role/Social limitations, 87.93 100 100
emotional
Role/Social limitations, 86.21 100 100
behavioral
Role/Social limitations, 69.46 100 95
physical
Bodily pain/discomfort 91.67 75 75
Behavior 83.75 88.8 91.3
Global behavior 67.14 100 92.5
Mental health 83.76 72.5 88.8
Self-esteem 85.31 97.5 97.5
General health perceptions 58.44 64.4 86.3
Change in health 4.28 5 3
Family activities 81.88 63.8 100
Family cohesion 76.88 45 72.5
The Piers-Harris Children’s Self Concept Scale (age
range, 7-18) was filled out by 20 children (ARM = 11,
enuresis = 6, normal control = 3). The average scores for each
group are reported in Table 2. Statistical analysis was not
performed because of the low numbers in each group.
However, there is a clear trend for lower scores in children
with ARM (56.8) versus the enuresis control group (65.7) and
the normal controls (80). Our value of 56.8 is very similar to
Table 4 Child Health Questionnaire results: parent report
(children N5)
ARM
(n = 17)
Enuresis
control
(n = 16)
Normal
control
(n = 5)
Global health 73.53 87.5 78
Physical functioning 94.49 92.88 100
Role/Social limitations, 96.06 84.75 93.3
emotional
Role/Social limitations, 96.06 96.83 93.3
physical
Bodily pain/discomfort 82.06 93.75 64
Behavior 73.24 71.22 67.26
Global behavior 75.59 79.69 53
Mental health 85.29 74.69 78.5
Self-esteem 87.19 78.44 87.5
General health perceptions 56.58 71.25 66.9
Change in health 3.88 3.93 4
Parental impact, emotional 58.82 76.83 65
Parental impact, time 85.88 82.17 76.7
Family activities 85.59 81.17 62
Family cohesion 73.82 84 73

1018
M.L. Brandt et al.
Table 5
Results of Impact on Family Score
ARM
(n = 29)
Enuresis
control
(n = 20)
P
(A vs E)
Normal
control
(n = 20)
P (A vs N)
Overall 35.59 28.4 0.001 37 0.495
score
Financial 6.34 4.55 0.002 5.5 0.073
Social/ 14.56 12.3 0.003 15.65 0.830
Familial
Personal 17.94 14.3 0.002 18.6 0.501
strain
Mastery 5.56 7.4 0.361 8.5 0.022
A vs E, ARM vs enuresis, A vs N, ARM vs normal.
the result obtained by Ginn-Pease et al [14] for a group of 130
children with imperforate anus (average score, 59.97 F 9.05).
The CHQ was filled out by 38 parents and 11 children
(N10 years of age). Statistical analysis was not performed
because of the low numbers in each group. Again, a trend is
suggested with ARM patients averaging a score of 80
compared with the enuresis control (85) and normal controls
(100). The areas reported by the children that seemed to
have the greatest differences between the ARM group and
the control groups were Role/Social Limitations-Physical
and Bodily Pain/Discomfort (Tables 3 and 4).
The Impact on Family Scale was filled out by 71 parents.
The Impact on Family Score was significantly higher among
families of patients in the ARM group than in the enuresis
control groups in these areas: Total Impact score ( P = .001),
Financial Support score ( P = .002), General Impact score
( P = .005), and Disruption of Social Relations score ( P =
.003). Interestingly, there was no statistical difference
between the ARM group and the normal control group
(Table 5). However, when the distribution of scores is
considered, it became clear that a significantly greater
proportion of children with ARM had higher scores greater
than 30 compared with both the enuresis control group ( P =
.002) and the normal control group ( P b .001). In addition, a
higher proportion of both controls had a summary score of
20 or less as compared with the ARM group (Fig. 1). The
Fig. 1 Impact on Family Scores in ARM patients, enuresis
controls, and normal (inguinal hernia) control patients.
Fig. 2 Impact on Family Score in the current study (ARM)
versus reported scores in the literature.
Impact on Family Scores of children with ARM in this study
are higher than scores previously reported for normal
children [15], are slightly higher than scores reported for
children with asthma, and less than children after major
trauma [16], children in implantable cardioverter-defibrillators
[17], and children with chronic disease such as spina
bifida [18] (Fig. 2). The Impact on Family Score in our
study also correlated directly with the BCS score ( P = .034
using Pearson 2-tailed analysis). Children with a high BCS
score, indicative of more severe incontinence, also had
higher Impact on Family Scores.
3. Discussion
Incontinence after repair of an ARM is common and
can result in significant psychological consequences for
children and impede normal social development [19-22].
Ultimately, achieving good QOL in children with ARMs is
dependent not only on successful surgical inventions but
also on other strategies such as psychological counseling,
drug therapy, dietary restrictions, and bowel training
programs [21,22]. Although there are published results
based on the experience of physicians experienced in the
repair of ARMs, there are no prospective trials to study
postoperative regimens to improve continence. The essential
first step in designing such studies is to develop an
objective measure of continence in children with ARMs.
The BCS is a 23-question survey that can differentiate
between children who have had repair of an ARM,
children with enuresis, and normal children ( P b .05).
This tool may also be useful to prospectively study
interventions in children with incontinence after repair of
an ARM. In the clinical setting, a 23-question form will be
difficult to use. Ideally, a shorter form would be ideal. We
showed that an abbreviated version of the BCS is just as
effective in differentiating the ARM patients from control
patients. Further prospective study will be necessary to
determine if, as expected, this form will be clinically
useful in the management of postoperative ARM patients.
In this study, there was no difference in the BCS between
children with high imperforate anus and children with low

Validation of the Baylor Continence Scale in children with anorectal malformations 1019
imperforate anus. This is most likely the result of clinical
bias because there were only 7 children with low lesions
compared with 26 with high lesions in the study group.
Furthermore, children who are doing well may be less likely
to be brought to a specialty clinic such as the ARM clinic.
Further studies are needed to determine the long-term
outcome of low versus high imperforate anus.
An important result of this study was to discover the longterm
effect of imperforate anus on self-esteem and family
function. It is clear that the issues associated with imperforate
anus do not end after surgery but continue for the
patient’s lifetime. It is important that pediatric surgeons,
pediatricians, and physicians who will care for these patients
as adults understand the pathophysiology of incontinence
associated with imperforate anus and how to treat it. It is also
important to recognize, address, and deal with the psychological
and family issues that accompany this diagnosis.
Appendix A. The BCS Questionnaire
Please check the box that best describes your child.
1. My child is:
0. 1. 2. 3. 4.
Not old
enough
to be
toilet trained
Toilet
trained
and no
accidents
Has
occasional
accidents
Wears
diapers/
pull-ups
at night
Wears
diapers/
pull-ups
day and night
2. In the last week, has your child experienced pain in the
abdomen?
0. 1. 2. 3. 4.
None Once this Twice this Every other Every day
week week day
3. In the last week, has your child experienced swelling
in the abdomen?
0. 1. 2. 3. 4.
None Once this Twice this Every other Every day
week week day
4. In the last week, has your child experienced
constipation?
0. 1. 2. 3. 4.
None Once this Twice this Every other Every day
week week day
5. Does your child have any leakage of stool at
night only?
0. 1. 2. 3. 4.
None Once this Twice this Every other Every night
week week night
6. Does your child have any leakage of stool during the
day only?
0. 1. 2. 3. 4.
None Once this Twice this Every other Every day
week week day
7. Does your child have any leakage of stool at night and
during the day?
0. 1. 2. 3. 4.
None Once this Twice this Every other Every day
week week day and night and night
8. Does your child have any leakage of urine at
night only?
0. 1. 2. 3. 4.
None Once this Twice this Every other Every night
week week night
9. Does your child have any leakage of urine during the
day only?
0. 1. 2. 3. 4.
None Once this Twice this Every other Every day
week week day
10. Does your child have any leakage of urine at night
and during the day?
0. 1. 2. 3. 4.
None Once this Twice this Every other day Every day
week week and night and night
11. Does your child have to strain (push) to have a stool?
Never-0 Seldom-1 Sometimes-2 Frequently-3 Always-4
12. Does your child complain of pain when he/she has a
stool?
Never-0 Seldom-1 Sometimes-2 Frequently-3 Always-4
13. Do you ever see blood with your child’s bowel
movement?
Never-0 Seldom-1 Sometimes-2 Frequently-3 Always-4
14. Between bowel movements, does your child leak stool?
Never-0 Seldom-1 Sometimes-2 Frequently-3 Always-4
15. Do you think that your child sometimes needs to pass
stool but actively tries to hold it in?
Never-0 Seldom-1 Sometimes-2 Frequently-3 Always-4

1020
16. Does your child take laxatives?
0. 1. 2. 3. 4.
Never Infrequent Every day 1-2 times/day Greater than
2 times/day
If yes, what laxative have you given your child?
_______________________________________________
How much do you use? ___________________What
time do you give it?_______________________________
After taking the laxative, how long before your child has
a bowel movement?________________________________
17. Does your child use enemas?
0. 1. 2. 3. 4.
Never Infrequent Every week Every day Greater than
1 time/day
If yes, what enema have you given your child?
________________________________________________
How much do you use?_________________________
________________________________________________
18. Has your child missed school days because of bowel
problems since your last visit?
0. 1. 2. 3. 4.
Never b1 day/ 1 day/ 2-3 days/ N3 days/
month month month month
19. Has your child missed school days because of urinary
tract problems since your last visit? If yes, please explain
below:
0. 1. 2. 3. 4.
Never b1 day/ 1 day/ 2-3 days/ N3 days/
month month month month
20. Please describe the typical stool pattern your child
has had for the last week.
Number of stools:
1. 2. 3. 4.
Once 1-2 times/day or 4-5 times/day N5 times/day
a day every other day or twice/week or once a week
21. Please describe the typical character of your child’s
stools for the last week.
1. 2. 3. 4.
Soft but Soft and Hard but Very hard and big or
small large small or loose runny (like water)
22. Does your child leak stool when he/she passes gas?
0. 1. 2. 3. 4.
None Once a week Twice a week Every other day Every day
23. Does your child leak stool when he/she urinates?
0. 1. 2. 3. 4.
None Once a week Twice a week Every other day Every day
Appendix B. The Abbreviated Baylor Social
Continence Scale
1. Does your child have any leakage of stool at night
only?
0. 1. 2. 3. 4.
None Once this Twice this Every other Every night
week week night
2. Does your child have any leakage of stool during the
day only?
0. 1. 2. 3. 4.
None Once this Twice this Every other Every day
week week day
3. Does your child have any leakage of urine during the
day only?
0. 1. 2. 3. 4.
None Once this Twice this Every other Every day
week week day
4. Does your child complain of pain when he/she has a
stool?
Never-0 Seldom-1 Sometimes-2 Frequently-3 Always-4
5. Do you think that your child sometimes needs to pass
stool but actively tries to hold it in?
Never-0 Seldom-1 Sometimes-2 Frequently-3 Always-4
6. Does your child leak stool when he/she passes gas?
0. 1. 2. 3. 4.
None Once a week Twice a week Every other day Every day
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Discussion
Diana Farmer, MD (San Francisco, CA): How do you use
this for the everyday practice?
Brandt, MD (response): Because this scale was not yet
validated, I have not changed my practice based on the
results. However, I am prospectively studying this and
hope to show that the scale will be useful to direct therapy.
Diana Farmer, MD (San Francisco, CA): Do you think
parents with a newborn with neonatal anorectal malformations
are going to be discouraged by this information?
Brandt, MD (response): I think families need to know that
this is not a devastating condition, but it is a lifelong
condition. Being honest helps much more than telling
them that the outcomes are always great - which they
aren’t. We’ve all had the experience of a teenage who
arrives in our clinic years after their original operation
with horrible continence problems. Children with
ARMs can really be blostQ in our medical system.
Add to that the embarassment that many children and
their families feel about stooling issues and you end up
with a true disability.
C.D. Smith, MD (Charleston, SC): Mary, how do you
go about administering this? If you’re following a
patient over years, do they become desensitized to it
with the nurse? Or do you do it? Or is it sent to them
in the home?
Brandt, MD (response): For this study, we had a research
assistant who sat with the family and administered the
surveys. My experience has been that most of these
parents are delighted to have someone take this kind of
interest - and are happy to contribute to something they
think will make a difference for other kids. We’ve had
almost a 100% participation rate in our ARM patients
as a result.
C.D. Smith, MD (Charleston, SC): So the parents are the
ones filling out?
Brandt, MD (response): The surveys are age appropriate.
Older children answer the questions directly and
participate in the impact on family survey. Younger
children, obviously, can’t do that.