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known to lower heart rate and blood pressure, many primary care providers remain hesitant to prescribe it for infants (unpublished observations).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.