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唇腭裂手术众筹与获得治疗的机会

Cleft Lip and Palate Surgery Crowdfunding and Access to Care.

机构信息

The Warren Alpert Medical School of Brown University.

Department of Plastic and Reconstructive Surgery, Rhode Island Hospital, Providence, RI.

出版信息

J Craniofac Surg. 2021;32(2):469-471. doi: 10.1097/SCS.0000000000006900.

Abstract

A total of 169 ACPA approved teams treat cleft deformities in the United States. These centers are unevenly distributed, and families may disproportionally pay extra travel costs to consult a multidisciplinary cleft team. Families experiencing hardships are able to create campaigns on GoFundMe to advertise their fundraiser publicly. The authors sought to establish whether a correlation exists between patients asking for support for cleft treatment and their geographic location in the US.A total of 635 crowdfunding campaigns for cleft lip and/or palate were reviewed from GoFundMe. Google searches for cleft lip and palate were evaluated utilizing Google Trends, with values reported as Relative Search Volumes (RSV). Driving distances and travel time to the nearest approved ACPA center were calculated using Google Maps data.There was a statistically significant difference in average driving distance and travel duration between the different subregions of the US (P  =  0.0059 and 0.026, respectively). The South subregion had the highest proportion of campaigns (n = 259, 40.9%), mean driving distance (105.75 km) and mean driving duration (1 hour 8 minutes). The number of approved teams per state was negatively correlated to both RSV scores (r = -0.38, P  =  0.048) and the number of campaigns (r = -0.34, P  =  0.014).There is an uneven distribution of ACPA centers among the US subregions. The South seems to have the highest need for care, as identified by proportionate number of campaigns, adjusted driving distances and travel time. This data suggests that underserved areas for cleft care are correlated with greater numbers of hardship campaigns and more internet searches regarding cleft lip and palate.

摘要

共有 169 个 ACPA 认可的团队在美国治疗唇腭裂畸形。这些中心分布不均,家庭可能会额外支付不成比例的旅行费用来咨询多学科的唇腭裂团队。有困难的家庭可以在 GoFundMe 上创建活动,公开宣传他们的筹款活动。作者试图确定患者请求支持唇腭裂治疗与其在美国的地理位置之间是否存在相关性。从 GoFundMe 上共审查了 635 个唇裂和/或腭裂的众筹活动。利用 Google Trends 评估了唇裂和腭裂的谷歌搜索,报告值为相对搜索量(RSV)。使用 Google Maps 数据计算到最近的 ACPA 中心的驾驶距离和旅行时间。美国不同地区的平均驾驶距离和旅行时间存在统计学差异(P=0.0059 和 0.026)。南部地区的活动比例最高(n=259,40.9%),平均驾驶距离(105.75 公里)和平均驾驶时间(1 小时 8 分钟)最长。每个州的认可团队数量与 RSV 评分(r=-0.38,P=0.048)和活动数量(r=-0.34,P=0.014)呈负相关。ACPA 中心在美国各地区的分布不均。南部地区似乎对护理的需求最高,这可以从活动数量、调整后的驾驶距离和旅行时间的比例来确定。这些数据表明,唇腭裂护理服务不足的地区与更多的困难活动以及更多关于唇裂和腭裂的互联网搜索相关。

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