Appendix 1: Survey Questionnaire
CASE SCENARIO 1
Prenatal Ultrasound at 32 weeks gestation shows:
 Intravesical ureterocele
 The right upper pole is hydronephrotic with rim of parenchyma
 Ureter is dilated and tortuous
Male baby is born term. Would you:
YES
NO
Place the child on prophylactic antibiotics at birth?
Get a VCUG?
Get a renal scan if the postnatal ultrasound is similar to the prenatal?
Advocate for a circumcision at birth?
POSTNATAL EVALUATION AT 1 MONTH IN A MALE CHILD
 Severe upper pole right hydronephrosis
Ultrasound Exam
 Significant dilatation of ureter with tortuosity
 No Reflux
Cystourethrogram

Poor function of the upper pole
Renal Scan
Would you recommend antibiotic prophylaxis?
YES
NO
How would you manage this condition at 3 months of age? (select one)
1
2
3
4
Watchful waiting
Puncture Ureterocele
Excision ureterocele and reimplantation
Other (describe)
Would your answer have been different if this was a female infant?
If Yes please explain
YES
NO
EVALUATION AT 18 MONTHS OF AGE (MALE CHILD)

Right Hydronephrosis and hydroureter not changed


No reflux
Poor function upper pole
Ultrasound
Cystourethrogram
Renal Scan
Of the procedures stated below which would you recommend? (respond to each)
Definitely
Yes
Probably
Yes
Probably
No
Definitely
No
Continue watchful waiting
Puncture ureterocele
Excise ureterocele with reimplant
Partial nephrectomy
Ureteroureterostomy
Ureteropyelostomy
CASE SCENARIO 2
Prenatal ultrasound at 32 weeks gestation
The right upper pole is hyper-echoic without hydronephrosis.
The distal right ureter is mildly dilated. Ureterocele present
The left kidney appears normal.
MALE baby is born at 40 weeks gestation without incident. Would you:
YES
Place the child on prophylactic antibiotics at birth?
Get a VCUG?
Get a renal scan if the postnatal ultrasound is similar to the prenatal?
Advocate for a circumcision at birth?
POSTNATAL EVALUATION AT 1 MONTH IN MALE INFANT
Ultrasound
Cystourethrogram
Renal Scan




Hyper-echoic right upper pole without hydronephrosis.
The distal right ureter is dilated
Large intravesical ureterocele. No reflux
No function of the upper pole.
NO
How would you manage this child at 3 months of age?
1
2
3
4
Watchful waiting
Puncture Ureterocele
Partial Nephrectomy and ureterectomy (open or lap)
Other (describe)
EVALUATION OF ABOVE MALE CHILD AT 12 MONTHS OF AGE
 Hydronephrosis has resolved.
Ultrasound
 Ureterocele still Present.
He is off Prophylaxis and asymptomatic
From the procedures below which would you recommend?(respond to each)
Definitely Probably
Probably
No
No
Yes
Continue watchful waiting
Puncture ureterocele
Partial nephrectomy and ureterectomy
If this child had a second opinion with a different recommendation than yours
would you be supportive?
Definitely
Yes
NO
YES
CASE SCENARIO 3
Because of severe hydro in a FEMALE CHILD without reflux and good renal function you puncture
the ureterocele.
Postoperatively: VCUG shows high grade VU reflux to the upper pole.
You decide to watch this conservatively.
The child is now 5 years old, asymptomatic and continues to have reflux
Of the procedures stated below which would you recommend?
Definitely
Yes
Probably
Yes
Probably
No
Definitely
No
Continue watchful waiting
Excise ureterocele with reimplantation
Ureteroureterostomy
Endoscopic injection of Deflux
If this child had a second opinion and the recommendation was endoscopic
injection of Deflux would you be supportive?
Yes
No
For management of prenatally diagnosed asymptomatic duplex system ureterocele what is the
most important factor in your decision making process to surgically intervene?
Very
Important
Somewhat
Important
Not important
Risk of anesthesia 0-3 months of age
Risk of anesthesia 3-6 months of age
Risk of anesthesia after 6 months
Function of the upper pole
Function of normal renal units
Presence of symptoms such as UTI
Risk of surgery 0-6 months of age
Risk of surgery after 6 months of age
Rank these statements based on your opinion regarding ureteroceles.
Strongly
agree
Prenatal detection improves renal outcomes
Prenatal detection has increased the prevalence of
surgery
Early interventions has improved outcomes
The majority of children with ureteroceles will
require intervention
I am familiar with the literature on ureteroceles.
The current literature is sufficient to establish
strict uniform practice guidelines
Outcome analysis should combine renal outcomes
and overall morbidity
Outcome analysis should focus on renal outcomes
alone
I would be willing to participate in randomized
control trials that compare watchful waiting to
surgical intervention
I would be willing to participate in a randomized
controlled trial comparing antibiotic prophylaxis
to no antibiotics
Agree
Disagree
Strongly
disagree
Now we would like to know about your practice
0
1-5
6-10
>10
Yes
No
How many cases of ureteroceles do you see per year?
Prenatal ultrasound is routinely performed where I practice.
Do you perform laparoscopic surgery?
Yes
No
Do you perform pediatric urology robotic cases?
Yes
No
Where do you
practice?
North
America
Europe
Asia
0-5 yrs
Africa
6-10 yrs
Australia/New Zealand
11-15 yrs
16 or more yrs
How many years have you been
practicing pediatric urology?
0-25%
26-50%
51-75%
> 75%
What percent of your practice is devoted to
pediatric urology?
Academic
Private
What type of practice are you mainly associated with?
Male
Female
What is your gender
We would like to thank you for taking your time in responding to this survey.
If you have comments or concerns regarding the survey you may write them below or email me at paul.merguerian@dartmouth.edu.
TABLE 1: SURVEY RESPONDENTS DEMOGRAPHICS
NUMBER(PERCENT)
LOCATION OF PRACTICE
United States
Europe
Asia
Other
NUMBER CASES SEEN PER YEAR
0
1-5
6-10
>10
GENDER
Male
Female
Missing
YEARS OF EXPERIENCE
0-5 years
6-10 years
11-15 years
More than 15 years
Missing
PEDIATRIC PATIENTS IN PRACTICE
0-25%
26-50%
51-74%
More than 75%
Missing
PRACTICE TYPE
Academic
Private
Missing
85(36.5%)
109(46.8%)
27(11.6%)
12(5.1%)
3(1.29%)
96(41.2%)
91(39.1%)
43(18.4%)
192(82.4%)
39(16.7%)
2(0.9%)
37(15.9%)
39(16.7%)
39(16.7%)
117(50.2%)
1(0.4%)
5(2.2%)
20(8.6%)
35(15%)
171(73.4%)
2(0.86%)
191(82%)
39(16.7%)
3(1.3%)
TABLE 2: Initial evaluation and management at 3 months Case scenario 1.
Number (Percent)
P value
173/233(74.2%)
Prophylactic antibiotics
205/233(88%)
VCUG
200/233(85.4%)
Renal Scan
77/233(33%)
Circumcision
Management at 3 months
52/233(23.5%)
Watchful Waiting
31/85(36.5%)
P<0.0001
United States
19/109(17.4%)
Europe
2/27(7.4%)
Asia
110/233(49.8%)
Puncture Ureterocele
31/85(36.5%)
United States
57/109(52.3%)
Europe
22/27(81.5%)
Asia
59/233(26.7%)
Partial Nephrectomy
23/85(27.1%)
United States
33/109(30.3%)
Europe
3/27(11.1%)
Asia
Table 3: Case Scenario 1: Total number of Definitely Yes and Probably Yes responses to
management at 18 months of age.
Watchful waiting
United States
Europe
Asia
Puncture
United States
Europe
Asia
Excision and reimplant
United States
Europe
Asia
Partial nephrectomy
United States
Europe
Asia
Ureteroureterostomy
United States
Europe
Asia
Ureteropyelostomy
United States
Europe
Asia
Definitely Yes
Probably Yes
P value
10/85(11.8%)
4/109(3.7%)
1/27(3.7%)
20/85(23.5%)
20/109(18.3%)
7/27(25.9%)
P=0.37
10/85(11.8%)
14/109(12.8%)
9/27(33.3%)
17/85(20%)
29/109(26.6%)
8/27(29.6%)
P=0.08
1/85(1.18%)
6/109(5.5%)
4/27(14.8%)
10/85(11.8%)
14/109(12.8%)
7/27(25.9%)
P=0.014
19/85(22.3%)
34/109(31.2%)
7/27(25.9%)
27/85(31.8%)
39/109(35.8%)
10/27(37%)
P=0.2
2/85(2.3%)
2/109(1.8%)
1/27(3.7%)
13/85(15.3%)
1/109(0.9%)
4/27(14.8%)
P<0.0001
0
0
0
10/85(11.8%)
2/109(1.8%)
7/27(25.9%)
P<0.0001
TABLE 4: Initial evaluation and management at 3 months Case scenario 2.
Number (Percent)
P value
168/233(72.1%)
Prophylactic antibiotics
Management at 3 months
110/233(47.2%)
Watchful Waiting
50/85(58.8%)
P=0.013
United States
46/109(42.2%)
Europe
10/27(37%)
Asia
83/233(35.6%)
Puncture Ureterocele
27/85(31.8%)
United States
35/109(32.1%)
Europe
15/27(55.6%)
Asia
38/233(16.3%)
Partial Nephrectomy
7/85(8.2%)
United States
27/109(24.8%)
Europe
2/27(7.4%)
Asia
Table 5: Case Scenario 2: Total number of Definitely Yes and Probably Yes responses to
management at 18 months of age.
Definitely Yes Probably Yes P value
Watchful waiting
United States
6/85(7.1%)
19/85(22.3%)
P=0.07
Europe
5/109(4.6%)
36/109(33%)
Asia
4/27(14.8%)
6/27(22.2%)
Puncture
United States
28/85(34.1%) 34/85(40%)
P=0.38
Europe
28/109(25.7%) 47/109(43.1%)
Asia
5/27(18.5%)
9/27(33.3%)
Partial nephrectomy
United States
37/85(43.5%) 29/85(34.1%)
P=0.07
Europe
35/109(32.1%) 37/109(33.9%)
Asia
3/27(11.1%)
12/27(44.4%)
Table 6: Case Scenario 3: Total number of Definitely Yes and Probably Yes responses to
management 5 years after endoscopic management with reflux to the upper pole.
Definitely Yes Probably Yes P value
Watchful waiting on prophylaxis
United States
1/85(1.2%)
14/85(16.5%)
P=0.2
Europe
6/109(5.5%)
10/109(9.2%)
Asia
0/27(0%)
6/27(22.2%)
Watchful waiting off prophylaxis
United States
4/85(4.7%)
22/85(25.9%)
P=0.25
Europe
15/109(13.8%) 35/109(32.1%)
Asia
3/27(11.1%)
8/27(29.6%)
Reimplantation
United States
12/85(14.1%) 38/85(44.7%)
P=0.27
Europe
23/109(21.1%) 30/109(27.5%)
Asia
3/27(11.1%)
11/27(40.7%)
Ureteroureterostomy
United States
6/85(7.1%)
22/85(25.9%)
p=0.002
Europe
3/109(2.7%)
10/109(9.2%)
Asia
1/27(3.7%)
7/27(25.9%)
Deflux
United States
3/85(3.6%)
7/85(8.3%)
P=0.005
Europe
8/109(7.3%)
22/109(20.2%)
Asia
3/27(11.1%)
10/27(37%)
Table 7: Factors important in surgical decision making
Question
Risk of anesthesia under 3 months of age
Risk of anesthesia under 6 months of age
Risk of anesthesia over 6 months of age
Preserving function of the upper pole
Preserving function of the lower pole and
contralateral kidney
Presence of symptoms (urinary tract infection)
Risk of surgery under 6 months of age
Risk of surgery over 6 months of age
Very
important
21.5%
3.9%
1.7%
48.9%
85.4%
Somewhat
important
44.6%
32.2%
11.2%
36.9%
10.3%
Not
important
33.5%
63.9%
85.8%
12.9%
4.3%
83.3%
18.5%
5.6%
15.9%
51.1%
25.3%
0.4%
30%
68.7%
Table 8: Perception of Pediatric Urologists regarding outcomes and evidence-based management
Perception
Exposure to anesthetic in 1st 12 weeks
affects brain
Prenatal detection has improved
outcomes
Prenatal detect increased prevalence of
surgery
Early intervention has improved
outcome
Majority of children with ureterocele
require intervention
I am familiar with literature
Current literature sufficient to
establish strict uniform practice
Outcome analysis should combine
renal outcomes and overall morbidity
Outcome analysis should focus on
renal outcomes alone
Percent
Strongly
Agree
3
Percent
Agree
Percent
Disagree
25.3
60.1
Percent
Strongly
Disagree
11.6
11.7
56
29.3
3
17.2
69.5
12
1.3
9
60.9
28.8
1.3
18
64.8
16.3
0.9
20.3
1.7
74.1
15
5.6
70
0
13.3
56
42.2
1.7
0
2.1
10.7
65.7
21.5
.
Figure 1: Case scenario 1: Duplex system intravesical ureterocele with upper pole hydronephrosis and poor function without
vesicoureteral. Management by pediatric urologists at 18 months of age. Definitely Yes responses are on left and Definitely No
responses are on the right of each management option.
Figure 2: Case scenario 2: Duplex system intravesical ureterocele without hydronephrosis or vesicoureteral reflux. Management by
pediatric urologists at 12 months of age. Definitely Yes responses are on left and Definitely No responses are on the right of each
management option.
Figure 3: Case scenario 3: Ureterocele puncture at birth creating high grade reflux into upper pole moiety. Management after 5 years.
Definitely Yes responses are on left and Definitely No responses are on the right of each management option.