For patients referred to you/your clinic with infantile hemangiomas,
which treatment approach do you currently use most often?
|
Observation alone
Propranolol (oral)
Timolol (topical)
Steroids (oral)
Steroids (intralesional)
Pulse dye laser therapy
Referral to another practitioner
Other
|
N = 29
2 (6.9%)
18 (62.1%)
5 (17.2%)
0
0
0
3 (10.3%)
1 (3.4%) (atenolol)
|
|
An infant is less than 5 weeks gestationally-corrected age, has a
sizeable, growing infantile hemangioma on the trunk or extremity,
and is otherwise healthy. Would you recommend propranolol therapy for
this patient?
|
Yes, usually
Yes, but only if it was causing problems (such as ulceration, bleeding,
etc.)
No, I would wait until the patient is at least 5 weeks
gestationally-corrected age (or older)
|
N = 27
12 (44.4%)
12 (44.4%)
3 (11.1%)
|
Truly depends on type of hemangioma; risk of ulceration not mentioned.
We use atenolol, not propranolol, due to superior safety profile and
equivalent efficacy.
|
An infant is less than 5 weeks gestationally-corrected age, has a
sizeable, growing infantile hemangioma in the head and neck
region, and is otherwise healthy. Would you recommend propranolol
therapy for this patient?
|
Yes, usually
Yes, but only if it was causing problems (such as ulceration, bleeding,
etc.)
No, I would wait until the patient is at least 5 weeks
gestationally-corrected age (or older)
|
N = 27
20 (74.1%)
7 (25.9%)
0
|
Truly depends on type of hemangioma.
We use atenolol, not propranolol, due to superior safety profile and
equivalent efficacy.
|
If you treat (or recommend treatment for) an infant who is less than 5
weeks gestationally-corrected age, and that patient is already an
outpatient, do you monitor the patient more closely than older
infants?
|
Yes, in the hospital
Yes, as an outpatient
No, I usually monitor them the same as older infants
Not applicable (I do not treat infants who are less than 5 weeks
gestationally-corrected age.)
|
N = 29
17 (58.6%)
7 (24.1%)
4 (13.8%)
1 (3.4%)
|
|
For infants who are otherwise healthy and have a reassuring history and
exam, how often do you administer the first dose of propranolol under
medical supervision (e.g. in the clinic or hospital)?
|
Almost always
Sometimes
Rarely or never
|
N = 27
17 (63%)
1 (3.7%)
9 (33.3%)
|
I usually see medically complex hemangiomas. Dermatology sees term,
uncomplicated patients with hemangiomas.
All who are under 8 weeks corrected gestational age get admitted for
initiation (24 hour observation)
One in my 20 years.
We don’t admit to start propranolol any more - all started in clinic.
|
If you administer the first dose of propranolol under medical
supervision (e.g. in the clinic or hospital), how long do you monitor
patients?
|
One hour
Two hours
Overnight
Other:
Not applicable (I do not administer the first dose of propranolol under
medical supervision.)
|
N = 28
2 (7.1%)
11 (39.3%)
3 (10.7%)
5 (17.9%)
7 (25%)
|
45 minutes
About 2-3 hours
4 hours
For under 3 months: slowly up titrate inpatient over 3 days.
It depends on the age and/or gestational age.
It depends on the reason for admission and other factors.
|
If you administer the first dose of propranolol under medical
supervision (e.g. in the clinic or hospital), what do you typically
monitor? (Select all that apply.)
|
Blood pressure
Heart rate
Glucose
Other
Not applicable (I do not administer the first dose of propranolol under
medical supervision.)
|
N = 28
21 (75%)
19 (67.9%)
11 (39.3%)
1 (3.6%)
7 (25%)
|
Other = pulse ox
|
Approximately what percentage of your patients are admitted to the
hospital to start propranolol?
|
< 10%
10 – 50%
50 – 90%
> 90%
|
N= 27
23 (85.2%)
3 (11.1%)
1 (3.7%)
0
|
Need more information. Is it a high risk PHACE patient? Are there any
other issues with the ulcerated hemangioma?
Patients with other chronic medical conditions (congenital heart
disease, chronic lung disease on oxygen, short gut syndrome)
|
A two-month-old full term infant has five small, scattered infantile
hemangiomas on the trunk and extremities. Would you order a liver
ultrasound for this patient?
|
Yes
No
Maybe
|
N = 27
20 (74.1%)
1 (3.7%)
6 (22.2%)
|
Only if signs/symptoms concerning for heart failure or hypothyroidism.
If liver was large.
Would have [primary care provider] or dermatology order.
|
Which of the following situations would you be likely to recommend
observation only? (Select all that apply.)
|
2 month old full term infant with an infantile hemangioma < 2
cm on the scalp
2 month old full term infant with an infantile hemangioma < 2
cm on the back, trunk, or extremity
2 month old full term infant with several small cutaneous hemangiomas,
no liver involvement.
6 month old full term infant with an infantile hemangioma of the trunk
or extremities with no significant growth in recent weeks.
|
N = 29
14 (53.8%)
19 (73.1%)
22 (84.6%)
22 (84.6%)
|
I use shared decision making with the parents/family.
It really depends on location on the scalp and height and quality of
lesion in all locations.
Scalp one depends on appearance - more raised ones can cause permanent
follicular damage.
Very difficult to answer for the first two examples. Would depend on
location, presence of ulceration or other complications.
|
Is there an approximate upper age limit at which you would not
recommend treatment?
|
No (no upper age limit)
Yes (please specify)
|
N = 27
11 (40.7%)
16 (59.3%)
|
6 – 9 months
8 months
9-12 months; hemangioma in plateau phase.
12 months
2 years
Depends on lesion perhaps more than age; [rarely] after age 24
months.
4 years
I would consider at almost all ages but less likely if older than 5.
Would at least try if affecting child psychosocially.
|
For infants who are otherwise healthy and have a reassuring history and
exam (you do not suspect liver involvement), before starting treatment,
how often do you get lab work?
|
Most of the time
Sometimes
Rarely or never
|
N = 26
2 (7.7%)
4 (15.4%)
20 (76.9%)
|
|
For infants who are otherwise healthy and have a reassuring history and
exam (you do not suspect liver involvement), which labs do you typically
get? (Select all that apply.)
|
Glucose
Basic metabolic profile (BMP)
Complete metabolic profile (CMP)
Complete blood count (CBC)
Thyroid function tests
Other
Not applicable (I do not get lab work pre-treatment.)
|
N = 26
5 (19.2%)
1 (3.8%)
1 (3.8%)
3 (11.5%)
1 (3.8%)
1 (3.8%)
20 (76.9%)
|
|
Before starting treatment, do you take baseline photographs (for the
electronic medical records)?
|
Almost always
Sometimes
Rarely or never
|
N = 27
24 (88.9%)
2 (7.4%)
1 (3.7%)
|
|
For infants who are otherwise healthy and have a reassuring history and
exam, before starting treatment, how often do you get a pediatric
cardiology consult?
|
Almost always
Sometimes
Rarely or never
|
N = 27
7 (25.9%)
3 (11.1%)
17 (63%)
|
|
For infants who are otherwise healthy and have a reassuring history and
exam (you do not suspect PHACE syndrome), before starting treatment, how
often do you get an echocardiogram (“echo”)?
|
Almost always
Sometimes
Rarely or never
|
N = 27
5 (19.2%)
4 (15.4%)
17 (63%)
|
|
For infants who are otherwise healthy and have a reassuring history and
exam (you do not suspect PHACE syndrome), before starting treatment, how
often do you get an electrocardiogram (EKG)?
|
Almost always
Sometimes
Rarely or never
|
N = 27
9 (34.6%)
2 (7.7%)
15 (57.7%)
|
|
If a patient is already an outpatient and has no vision or
airway-threatening lesion, which patients would you currently admit to
the hospital to start propranolol? (Select all that apply.)
|
None/almost none
Patients with PHACE syndrome
Infants less than 5 weeks gestationally corrected age
Patients with ulcerated, painful, or mildly bleeding hemangiomas
Patients with poor social situations
I admit all patients to start propranolol
Other
|
N = 28
7 (25%)
10 (35.7%)
18 (64.3%)
4 (14.3%)
11 (39.3%)
0
2 (7.1%)
|
|
In most cases, do you initially prescribe generic propranolol or trade
name propranolol (Hemangeol®)?
|
generic propranolol
Hemangeol®
Neither/not applicable
|
N = 28
20 (71.4%)
7 (25%)
1 (3,6%)
|
Hemangeol® is convenient, but [very expensive], so I never prescribe
it.
|
To the best of your knowledge, how easy is it for families to obtain
propranolol?
|
Very easy
Somewhat easy
Not at all easy
|
N = 29
27 (93.1%)
2 (6.9%)
0
|
|
To the best of your knowledge, how easy is it for families to get
propranolol covered by their insurance?
|
Very easy
Somewhat easy
Not at all easy
|
N = 29
25 (86.2%)
4 (13.8%)
0
|
|
To the best of your knowledge, which of these statements best fits your
practice/experience?
|
Generic propranolol is easier to prescribe/obtain than Hemangeol®.
Hemangeol® is easier to prescribe/obtain than generic propranolol.
Generic propranolol and Hemangeol® are equivalent to
prescribe/obtain.
|
N = 26
17 (65.4%)
1 (11.5%)
6 (23.1%)
|
|
If you decide to admit a patient to the hospital to initiate therapy,
how long do you typically keep the child in the hospital?
|
Overnight (24 hours or less)
Two to three days
Longer than three days
Other
Not applicable (I rarely or never admit patients to the hospital to
initiate therapy.)
|
N = 28
10 (35.7%)
8 (28.6%)
0
1 (3.6%)
9 (32.1%)
|
It depends on the reason for admission and other factors.
|
If a patient is already an outpatient and has no vision or
airway-threatening lesion, which patients would you currently admit to
the hospital to start propranolol? (Select all that apply.)
|
None/almost none
Patients with PHACE syndrome
Infants less than 5 weeks gestationally corrected age
Patients with ulcerated, painful, or mildly bleeding hemangiomas
Patients with poor social situations
I admit all patients to start propranolol.
Other
|
N = 28
7 (25%)
10 (35.7%)
18 (64.3%)
4 (14.3%)
11 (39.3%)
0
2 (7.1%)
|
|
For most patients, what is your usual starting daily dose
of propranolol?
|
< 1 mg/kg/day
1 mg/kg/day
2 mg/kg/day
3 mg/kg/day
Other
|
N = 28
3 (10.7%)
21 (75%)
4 (14.3%)
0
|
|
For most patients, what is your usual goal (full) dose of
propranolol?
|
1 mg/kg/day
2 mg/kg/day
2.5 mg/kg/day
3 mg/kg/day
Other
|
N = 28
0
19 (67.9%)
2 (7.1%)
7 (25%)
0
|
|
Assuming no significant side effects, how quickly do you increase to the
full dose (goal dose) of propranolol?
|
One week
Two weeks
Three weeks
Four weeks
Longer than four weeks
I start with full dose on day one.
Other
|
N = 26
6 (23.1%)
11 (42.3%)
3 (11.5%))
2 (7.7%)
0
2 (7.7%)
2 (7.7%)
|
|
How do you typically divide the total daily dose of propranolol?
|
Once a day (not divided)
Two times a day
Three times a day
Other
|
N = 28
0
16 (57.1%)
10 (35.7%)
2 (7.1%)
|
2 times a day except for PHACE and those less than 5 weeks.
Start TID until mom back to work then BID.
|
In your experience, approximately what percentage of the time do you or
the families discontinue propranolol due to side effects?
|
Less than 5%
5 – 10%
More than 10%
|
N = 25
19 (76%)
6 (24%)
0
|
We use atenolol almost exclusively and stop way less than 5% of the
time.
Often perceived side effect by parent has another cause.
|
In your experience, how often do you switch from one form of propranolol
(generic or Hemangeol®), to the other form due to side effects or
difficulty with administration?
|
Rarely
Sometimes
Frequently
|
N = 26
24 (92.3%)
2 (7.7%)
0
|
I have switched multiple patients from propranolol to atenolol because
of reactive airway problems and it is much better tolerated.
|
What is the typical interval for the patient’s next follow up
visit (first outpatient visit after starting propranolol)?
|
One week
Two weeks
Four weeks/one month
Two months
Other
|
N = 26
6 (23.1%)
6 (23.1%)
13 (50%)
1 (3.8%)
0
|
|
What is the typical interval for the patient’s follow up visit
starting with the third outpatient visit (second outpatient visit after
starting propranolol)?
|
One week
Two weeks
Four weeks/one month
Two months
Other
|
N = 25
0
2 (8%)
14 (56%)
8 (32%)
1 (4%)
|
|
Have you ever started propranolol using a telehealth encounter
only?
|
Yes
No
|
N = 26
7 (26.9%)
19 (73.1%)
|
During Covid lockdown, many patients were started via telehealth.
Will do the consult by telehealth but always first dose in clinic.
|
Are you currently using telehealth encounters for routine follow up
visits?
|
Yes
No
|
N = 25
16 (64%)
9 (36%)
|
[For] patients with difficulty coming to clinic visits, [we]
use telehealth and frequent nursing telephone calls.
Yes and no; sometimes depending on patient preference.
Only if I can get good photos and an accurate weight, but often I can.
|
How often do you provide oral syringes to the parents?
|
Always
Sometimes
Rarely or never
|
N = 27
17 (63%)
3 (11.1%)
7 (25.9%)
|
They are part of the Hemangeol® box.
Absolutely. And make certain parents are knowledgeable regarding
proper dosing.
Pharmacy does this.
|
How often do you teach or instruct a parent how to use an oral syringe
and how to draw up the prescribed dose?
|
Always
Sometimes
Rarely or never
|
N = 27
17 (63%)
4 (14.8%)
6 (22.2%)
|
Always
|
When starting propranolol, how do you educate parents?
|
Verbally only
Verbally, plus a printed handout (information sheet, brochure or
pamphlet)
Verbally, a printed handout, and a web site recommendation
Other
|
N = 28
11 (39.3%)
0
13 (46.4%)
2 (7.1%)
2 (7.1%)
|
Verbally and individual treatment plan for each patient.
Verbally and via electronic messaging.
|
If you provide a printed handout for the parents, which one do you
provide?
|
From the pedsderm.net web site
From the publication in Pediatric Dermatology (Martin K et
al. Propranolol treatment of infantile hemangiomas: anticipatory
guidance for parents and caretakers Pediatr Dermatol.
2013 Jan-Feb;30(1):155-9. Doi: 10.1111/pde.12022)
Pierre Fabre pamphlet “Facts you should know about infantile
hemangioma: Guidance for Parents”
I provide an institution-specific and/or custom-made handout
Not applicable (I do not provide an information handout for the
parents.)
|
N = 24
1 (4.2%)
1 (4.2%)
2 (8.3%))
12 (50%)
8 (33.3%)
|
|
Do you recommend any specific web site(s) for parents about infantile
hemangioma and/or propranolol?
|
Yes (please specify)
No
|
N = 28
3 (10.7%)
25 (89.3%)
|
Hemangioma Investigator Group, Pediatric Dermatology website, few
others
Ours and Hemangioma Investigator Group
National Organization of Vascular Anomalies.
|
For most patients, what is the typical time at which you
discontinue propranolol?
|
After six months of therapy, regardless of patient’s age
Approximately one year of age
Approximately 15 months of age
Other
|
N = 26
2 (7.7%)
15 (57.7%)
7 (26.9%)
2 (7.7%)
|
Wean at 12 months
Totally dependent on type of hemangioma - often add topical and/or
drop second dose and add topical.
|
When discontinuing propranolol, do you…
|
Discontinue it abruptly
Taper it
Let the patient outgrow the dose and then stop it at some point in the
future
Let the parent(s) decide when to stop
Other
|
N = 26
4 (15.4%)
14 (53.8%)
7 (26.9%)
0
1 (3.8%)
|
Outgrow then taper
|
If you taper the dose off, what is the typical length of the
taper?
|
One week
Two weeks
Four weeks/one month
Not applicable (I do not taper)
Other
|
N = 25
2 (8%)
6 (24%)
10 (40%)
6 (24%)
1 (4%)
|
Other = 3 weeks
|
After discontinuing propranolol, what is your typical follow up
strategy?
|
Reassess the patient in clinic at least one more time, off therapy
Discharge from your practice and have the patient follow up with his/her
primary care provider
Other
|
N = 26
17 (65.4%)
7 (26.9%)
2 (7.7%)
|
Reassess one time physically and then calls over a year (non billed).
Have the family call us if they see the hemangioma start to regrow or
get redder after propranolol stopped.
|
Other comments |
|
|
Each patient and each hemangioma is a bit different
- treatment is very specific to type of hemangioma and/or if there is
ulceration, risk of ulceration, visual issues, etc. Important to
recognize which patients warrant further evaluation. |