Wennberg Richard P, Watchko Jon F, Shapiro Steven M
Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington. United States.
Division of Newborn Medicine, Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania. United States.
Curr Pediatr Rev. 2017;13(3):210-219. doi: 10.2174/1573396313666170828112038.
Kernicterus is a common cause of death and morbidity in many Low- Middle-income Countries (LMICs) and still occurs in affluent nations. In either case, the immediate cause is delayed treatment of severe hyperbilirubinemia. In the West, a provider driven "systems approach" has been widely adopted to identify babies at risk prior to discharge from birthing centers with follow up monitoring based on the serum bilirubin level at time of discharge. The situation is more complicated in regions of the world where kernicterus is endemic, especially in LMICs where Glucose-6-phosphate Dehydrogenase Deficiency (G6PDd) is common and the system of jaundice management is often fragmented.
To examine reasons for errors in jaundice management leading to kernicterus and the potential beneficial role of enlisting more parental participation in management decisions.
We searched world literature related to pitfalls in jaundice management including deficiencies in providers' and parents' knowledge and behavior. Perspectives from mothers of children with kernicterus supplemented the literature review.
System failures contributing to kernicterus in affluent countries include a lack of follow up planning, bad advice by providers, and a delay in care seeking by parents. In many LMICs, the majority of births occur at home with unskilled attendants. Traditional practices potentiate hemolysis in G6PDd babies. The danger of severe jaundice is frequently underestimated both by parents and care providers, and cultural and economic barriers as well as ineffective therapies delay care seeking. The failure to provide parents information about identifying severe jaundice and knowledge about the risks and treatment of hyperbilirubinemia has contributed to delayed treatment in both affluent and low-middle-income countries. A recent non-randomized clinical trial, supports teaching all parents skills to monitor jaundice, signs of early neurotoxicity, the importance of breast feeding, avoidance of ineffective or dangerous practices, and when/where to seek help.
Empowering parents allow them to participate more fully in care decisions and to confront obstacles to care when provider services fail.
核黄疸是许多低收入和中等收入国家（LMICs）死亡和发病的常见原因，在富裕国家也仍有发生。在这两种情况下，直接原因都是严重高胆红素血症的治疗延迟。在西方，一种由医疗服务提供者主导的“系统方法”已被广泛采用，以在分娩中心出院前识别有风险的婴儿，并根据出院时的血清胆红素水平进行后续监测。在世界上核黄疸流行的地区，情况更为复杂，特别是在葡萄糖-6-磷酸脱氢酶缺乏症（G6PDd）常见且黄疸管理系统往往零散的低收入和中等收入国家。
探讨导致核黄疸的黄疸管理错误原因，以及争取更多家长参与管理决策的潜在有益作用。
我们检索了与黄疸管理中的陷阱相关的世界文献，包括医疗服务提供者和家长知识及行为方面的不足。核黄疸患儿母亲的观点补充了文献综述。
富裕国家中导致核黄疸的系统故障包括缺乏后续规划、医疗服务提供者的错误建议以及家长寻求护理的延迟。在许多低收入和中等收入国家，大多数分娩在家中由无技能的助产人员进行。传统做法会增强G6PDd婴儿的溶血作用。家长和医疗服务提供者常常低估严重黄疸的危险，文化和经济障碍以及无效治疗会延迟寻求护理。在富裕国家和低收入及中等收入国家，未能向家长提供识别严重黄疸的信息以及高胆红素血症的风险和治疗知识，都导致了治疗延迟。最近一项非随机临床试验支持教导所有家长监测黄疸的技能、早期神经毒性的迹象、母乳喂养的重要性、避免无效或危险做法以及何时/何地寻求帮助。
赋予家长权力能使他们更充分地参与护理决策，并在医疗服务失败时应对护理障碍。
