Results
Twenty-nine respondents participated in the survey. The characteristics of the respondents are shown in Table 1. The majority of respondents (51.7%) were PHOs from North America, with pediatric cardiology (34.5%) being the second largest group. One respondent was from Asia. Of the 28 responses from North America, 16 states were represented. At respondents’ institutions, the majority of patients with IH are treated by PHOs and dermatologists.
A summary of key responses is shown in Table 2. Hypothetical cases and management scenarios are shown in Table 3. From the responses, several specific observations and several generalizations can be made. The decision to observe or treat is subjective. Shared decision making with the parent(s) is commonly employed. When treatment is deemed indicated, propranolol is the most commonly used first-line treatment. Respondents are more likely to treat IH on the head or neck than the trunk or extremities. For uncomplicated patients at least 5 weeks old by CGA, most are treated as outpatients. The decision on which patients to admit for monitoring varies widely and includes indications such as those with PHACE syndrome; those less than 5 weeks CGA; patients with ulcerated, painful, or bleeding hemangiomas; and patients with perceived high risk social situations. Many respondents will treat infants less than 5 weeks CGA, especially if an IH is on the head/neck and/or causing problems (such as ulceration or bleeding). A majority (83%) would monitor those patients (< 5 weeks CGA) more closely than older patients (> 5 weeks CGA), usually (58.6%) in the hospital. For infants > 5 weeks CGA who are otherwise healthy and have a reassuring history and exam, the majority (63%) of respondents administer the first dose of propranolol under medical supervision (e.g. in the clinic or hospital). The period of observation ranges from 1 hour to overnight, and longer for high risk/complicated patients. Heart rate and blood pressure are the most common values monitored. Most respondents (74%) obtain a liver ultrasound if 5 or more cutaneous IH are present. Approximately 40% of providers do not have an upper age limit for treatment. For patients without PHACE syndrome or other risk factors for toxicity, a minority of respondents obtain lab work, an electrocardiogram, an echocardiogram, or a cardiology consult prior to starting treatment. The majority (88.9%) of respondents take baseline photographs for the patient’s electronic medical records. Most clinicians (71%) prescribe generic propranolol rather than trade name propranolol (Hemangeol®). Propranolol is perceived to be very easy to obtain including coverage by the patient’s insurance and/or only a small copay. The most common goal dose for propranolol is 2 mg/kg/day, divided twice a day, and the full dose is most commonly reached (via escalating dose) at 2 weeks of therapy. The perceived discontinuation rate of propranolol due to side effects is less than 10%. Respondents infrequently (7.7%) switch from one form of propranolol (generic to trade name, or vice versa) due to side effects. On-therapy and off-therapy practices vary considerably. A minority of providers (26.9%) have started propranolol using a telehealth encounter only. However, a majority (64%) are using telehealth for routine follow-up visits. A majority of respondents (63%) provide oral syringes and instruct the parents on the prescribed dose. A variety of educational tools are used, although few specific websites are recommended. Most respondents (57.7%) discontinue propranolol at approximately 1 year of age for typical cases (although each patient is considered unique). When discontinuing propranolol, the majority of respondents (53.8%) taper it, typically over 2 to 4 weeks; 26.9% let the patient outgrow the dose and then stop it at some point in the future; 15.4% discontinue it abruptly. The majority of respondents (65%) reassess patients in clinic at least once after discontinuing propranolol, presumably to assess for rebound growth.