Introduction
Infantile hemangioma (IH) is the most common benign tumor of infancy. IH
typically appears shortly after birth and proliferates over several
months. IH growth usually plateaus by 9 – 12 months of age, followed by
spontaneous involution over months to years.1 The
majority of IH are small and many patients require no treatment.
However, IH can cause morbidity including ulceration (with or without
infection), mass effects related to location (such as respiratory
difficulties from airway lesions), and disfigurement. Thus, many
patients benefit from treatment.2 Following the first
report in 2008,3 the use of propranolol has
revolutionized the treatment of IH. Multiple clinical trials and case
series have since documented propranolol’s safety and
efficacy.4-12 Hemangeol®, a pediatric formulation
of propranolol to treat patients with IH at least 5 weeks old by
corrected gestational age (CGA), was approved by the United States Food
and Drug Administration (FDA) in 2014.13
Despite a surge of publications about propranolol therapy for IH, many
questions remain unanswered. A consensus conference report (co-authored
primarily by dermatologists) published in 2013 acknowledged
“significant uncertainty and divergence of opinion regarding safety
monitoring and dose escalation for propranolol use in
IH.”14 In addition to monitoring and dose escalation,
other issues with limited evidence include the optimal dose of
propranolol, duration of therapy, the upper and lower age limits for
treating children with IH, how often to see patients in follow-up, which
patient should get additional work up (such as an echocardiogram), and
how propranolol should best be discontinued (tapered or stopped
abruptly).
A clinical practice guideline (CPG) for the management of IH was
published by the American Academy of Pediatrics in January
2019.15 It summarized the literature through January
2017 and provided evidence-based key action statements along with
supporting levels of evidence and strengths of recommendation. Because
propranolol is a nonselective antagonist of beta-adrenergic receptors
and is known to lower heart rate and blood pressure, many primary care
providers remain hesitant to prescribe it for infants (unpublished
observations). Therefore, referrals are often made to pediatric
hematologists/oncologists (PHO), dermatologists, plastic surgeons,
cardiologists, or other hemangioma experts when therapy with propranolol
is being considered. Indeed, the CPG suggests that, “depending on the
clinician’s comfort level and local access to specialty care,” infants
considered to have high risk IH may “require a higher level of
experience and expertise to determine if additional intervention is
indicated.”15 An electronic tool has been developed
and validated to help primary care providers decide which patients with
IH need treatment and/or referral.16
We hypothesized that there is wide variation amongst clinicians within
specialties and between specialties in how they treat and monitor
patients with IH. Many of the potential variations could have an impact
on cost, anxiety, and family issues such as time off work. The objective
of this study was to document these variations, and to identify areas
for additional research.