Massenburg Benjamin B, Jenny Hillary E, Saluja Saurabh, Meara John G, Shrime Mark G, Alonso Nivaldo
*Department of Medical Education, Icahn School of Medicine at Mount Sinai, New York, NY†Program in Global Surgery and Social Change, Harvard Medical School‡Department of Plastic and Oral Surgery, Boston Children's Hospital, Boston, MA§Department of Surgery, Weill Cornell Medical College, New York, NY||Department of Otolaryngology, Massachusetts Eye and Ear, Boston, MA¶Department of Plastic Surgery, University of Sao Paulo School of Medicine, São Paulo, Brazil.
J Craniofac Surg. 2016 Oct;27(7):1741-1745. doi: 10.1097/SCS.0000000000003038.
Cleft lip and/or palate (CLP) is estimated to occur in 1 out of every 700 births, but for many people residing in low- and middle-income countries this deformity may be repaired late in life or not at all. This study aims to analyze worldwide provider-perceived barriers to the surgical repair of CLP in low- and middle-income countries.
From 2011 to 2014, Smile Train distributed a multiple-choice, voluntary survey to healthcare providers to identify areas of need in CLP care worldwide. Data on provider-reported barriers to care were aggregated by year, country, and larger world regions.
A total of 1997 surveys were completed by surgeons and healthcare providers (60.7% response rate). The most commonly reported barriers were "patient travel costs" (60.7%), "lack of patient awareness" (54.1%), and "lack of financial support" (52.8%). "Patient travel costs" was the most commonly reported barrier in sub-Saharan Africa, the Middle East and North Africa, and South and Southeast Asia. "Lack of financial support" was the most commonly reported barrier in the Americas, Eastern Europe, and East Asia.
This is the largest intercontinental study on healthcare provider-identified barriers to care, representing the limitations experienced by healthcare professionals in providing corrective surgery for CLP around the world. Financial risk protection from hidden costs, such as patient travel costs, is essential. Community health workers and nurses are critical for communication and linking CLP care to the rest of the community. Recognition of these barriers can inform future policy decisions, targeted by region, for surgical systems delivering care for patients with CLP worldwide.
据估计，唇腭裂（CLP）的发生率约为每700例出生中有1例，但对于许多生活在低收入和中等收入国家的人来说，这种畸形可能在晚年才得到修复，或者根本无法修复。本研究旨在分析全球范围内提供者所感知到的低收入和中等收入国家唇腭裂手术修复的障碍。
2011年至2014年期间，微笑列车向医疗保健提供者发放了一份多项选择的自愿调查问卷，以确定全球唇腭裂护理方面的需求领域。关于提供者报告的护理障碍的数据按年份、国家和更大的世界区域进行汇总。
外科医生和医疗保健提供者共完成了1997份调查问卷（回复率为60.7%）。最常报告的障碍是“患者交通费用”（60.7%）、“患者意识不足”（54.1%）和“缺乏资金支持”（52.8%）。“患者交通费用”是撒哈拉以南非洲、中东和北非以及南亚和东南亚最常报告的障碍。“缺乏资金支持”是美洲、东欧和东亚最常报告的障碍。
这是关于医疗保健提供者所确定的护理障碍的最大规模洲际研究，代表了医疗保健专业人员在为全球唇腭裂患者提供矫正手术时所面临的限制。防范隐性成本（如患者交通费用）带来的财务风险至关重要。社区卫生工作者和护士对于沟通以及将唇腭裂护理与社区其他方面联系起来至关重要。认识到这些障碍可为未来针对全球唇腭裂患者护理手术系统的区域针对性政策决策提供参考。
