Methods
To better quantify and understand practice variations, we conducted an
internet-based survey of clinicians from a range of specialties who
treat patients with IH. The survey contained 47 questions, many of which
were multiple choice and allowed multiple answers (“select all that
apply”). Most questions had free text boxes where comments could be
made. An invitation and link to complete this voluntary survey was
posted on two listservs of the American Society of Pediatric
Hematology/Oncology: a Clinical Forum Digest as well as a listserv for
the Vascular Anomalies Special Interest Group. In addition, email
invitations were sent to personal contacts in dermatology, cardiology,
plastic surgery, pediatric otolaryngology, pediatric ophthalmology, and
general pediatrics. Forwarding and sharing of the survey link to
appropriate providers was encouraged. In addition, if a provider was not
the best person to complete the survey, they were encouraged to forward
the invitation to the person or discipline who treats the most patients
with IH at that institution. Multiple responses per institution were
encouraged. Because the survey link was posted on listservs and
liberally forwarded, we cannot determine the number of clinicians who
received or saw the link. Thus, the response rate is unknown. The survey
was created and administered using REDCap.17 The
survey was active from October 2021 until May 2022. Descriptive
statistics were used to analyze results. No protected health information
was obtained. This study was approved by the Institutional Review Board
at Atrium Health Wake Forest Baptist Medical Center in Winston-Salem,
North Carolina (USA).