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

被引:6
作者
Cohen-Cutler, Sally [1 ,2 ,10 ]
Blatt, Julie [3 ]
Bayliff, Sherry [4 ]
Iacobas, Ionela [5 ]
Hammill, Adrienne [6 ,7 ]
Sisk, Bryan A. [8 ,9 ]
机构
[1] Childrens Hosp Los Angeles, Canc & Blood Dis Inst, Los Angeles, CA USA
[2] Univ Southern Calif, Keck Sch Med, Los Angeles, CA USA
[3] Univ N Carolina, Div Pediat Hematol Oncol, Sch Med, Chapel Hill, NC USA
[4] Univ Kentucky, Dept Pediat, Div Pediat Hematol Oncol, Chandler Med Ctr, Lexington, KY USA
[5] Texas Childrens Hosp, Baylor Coll Med, Texas Childrens Vasc Anomalies Ctr, Dept Pediat, Houston, TX USA
[6] Cincinnati Childrens Hosp Med Ctr, Div Hematol, Cincinnati, OH USA
[7] Univ Cincinnati, Canc & Blood Dis Inst, Dept Pediat, Coll Med, Cincinnati, OH USA
[8] Washington Univ, Dept Pediat, Div Hematol Oncol, Sch Med, St Louis, MO USA
[9] Washington Univ, Bioeth Res Ctr, Dept Med, Sch Med, St Louis, MO USA
[10] 3501 Civ Ctr Blvd,Rm 3512, Philadelphia, PA 19104 USA
关键词
MULTIDISCIPLINARY; MANAGEMENT; EXPERIENCES; UNCERTAINTY; TEAM;
D O I
10.1016/j.jpeds.2023.113579
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
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.
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页数:7
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