Hypothetical cases and scenarios Responses Results Selected comments
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.