TY - JOUR
T1 - Vascular Anomalies Care in the United States
T2 - A Cross-Sectional National Survey
AU - Cohen-Cutler, Sally
AU - Blatt, Julie
AU - Bayliff, Sherry
AU - Iacobas, Ionela
AU - Hammill, Adrienne
AU - Sisk, Bryan A.
N1 - Funding Information:
The authors wish to acknowledge Pediatric Hematology–Oncology Vascular Anomalies Interest Group Practice Working Group; Rachel Swerdlin, CPNP, Taizo Nakano, MD, Joana Mack, MD, Whitney Eng, MD, and Georgina Rowe, MD.
Publisher Copyright:
© 2023 Elsevier Inc.
PY - 2023/10
Y1 - 2023/10
N2 - 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.
AB - 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.
KW - lymphatic malformation
KW - multidisciplinary care
KW - overgrowth syndrome
KW - PIK3CA-related overgrowth syndrome
KW - venous malformation
UR - http://www.scopus.com/inward/record.url?scp=85165077692&partnerID=8YFLogxK
U2 - 10.1016/j.jpeds.2023.113579
DO - 10.1016/j.jpeds.2023.113579
M3 - Article
C2 - 37353145
AN - SCOPUS:85165077692
SN - 0022-3476
VL - 261
JO - Journal of Pediatrics
JF - Journal of Pediatrics
M1 - 113579
ER -