Vascular Anomalies Care in the United States: A Cross-Sectional National Survey

Sally Cohen-Cutler; Julie Blatt; Sherry Bayliff; Ionela Iacobas; Adrienne Hammill; Bryan A Sisk

doi:10.1016/j.jpeds.2023.113579

Vascular Anomalies Care in the United States: A Cross-Sectional National Survey

J Pediatr. 2023 Oct:261:113579. doi: 10.1016/j.jpeds.2023.113579. Epub 2023 Jun 22.

Authors

Sally Cohen-Cutler¹, Julie Blatt², Sherry Bayliff³, Ionela Iacobas⁴, Adrienne Hammill⁵, Bryan A Sisk⁶

Affiliations

¹ Cancer and Blood Disease Institute, Children's Hospital Los Angeles, Los Angeles, CA; Keck School of Medicine, University of Southern California, Los Angeles, CA. Electronic address: sally.cohencutler@gmail.com.
² Division of Pediatric Hematology Oncology, University of North Carolina School of Medicine, Chapel Hill, NC.
³ Division of Pediatric Hematology/Oncology, Department of Pediatrics, University of Kentucky Chandler Medical Center, Lexington, KY.
⁴ Department of Pediatrics, Texas Children's Vascular Anomalies Center, Baylor College of Medicine, Texas Children's Hospital, Houston, TX.
⁵ Division of Hematology, Cincinnati Children's Hospital Medical Center and Department of Pediatrics, Cancer and Blood Diseases Institute, University of Cincinnati College of Medicine, Cincinnati, OH.
⁶ Division of Hematology/Oncology, Department of Pediatrics, Washington University School of Medicine, St. Louis, MO; Bioethics Research Center, Department of Medicine, Washington University School of Medicine, St. Louis, MO.

PMID: 37353145
DOI: 10.1016/j.jpeds.2023.113579

Abstract

Objective: To characterize the current distribution, composition, and practice patterns of multidisciplinary vascular anomalies (VAs) teams in the US.

Study design: This is a cross-sectional survey of children's hospitals in the US offering VAs care. We approached 142 children's hospitals that provided care for VAs via email. The survey evaluated VA clinic location, medical staffing, research participation, and treatments offered. The survey was administered between October 2021 and July 2022.

Results: Participants from 95 eligible hospitals responded to the survey (response rate = 67%). Large areas of the Midwest and Northwest US had no available multidisciplinary VA teams or clinics. Most respondents worked at academic centers (89%), with 66% at a freestanding children's hospital, and 56% reported having a multidisciplinary clinic. Most common physician participants in clinic included hematology-oncology (91%), interventional radiology (87%), dermatology (85%), plastic surgery (81%), and otolaryngology (74%). Only 38% of programs included medical geneticists. Smaller hospitals had fewer medical and ancillary staff and offered fewer therapeutic options. Research was available at most larger institutions (69%) but less commonly at smaller hospitals (34%).

Conclusions: Major portions of the US lack multidisciplinary VA care. Furthermore, VA programs vary in composition and geneticists are absent from the majority of programs. These findings should inform efforts to address disparate access and develop standards of care for multidisciplinary VA care in the US.

Keywords: PIK3CA-related overgrowth syndrome; lymphatic malformation; multidisciplinary care; overgrowth syndrome; venous malformation.

MeSH terms

Child
Cross-Sectional Studies
Hospitals, Pediatric
Humans
Otolaryngology*
Surveys and Questionnaires
United States
Vascular Malformations* / diagnosis
Vascular Malformations* / therapy