Mammadova Dilbar, Marek Ines, Galiano Matthias, Rascher Wolfgang
Department of Pediatrics and Adolescent Medicine, FAU Erlangen-Nurnberg.
Klin Padiatr. 2018 Jul;230(4):188-193. doi: 10.1055/s-0044-101547. Epub 2018 Apr 12.
Increased patient mobility and restricted treatment of children with end-stage renal disease forced families from the former Eastern Bloc countries to flee with their children to Germany for adequate medical treatment.
In a case study, the patients' charts were analysed retrospectively. In structured interviews, parents and patients were asked about their flight routes to Germany, their medical treatment and their integration.
From 2003 to 2013, eight children and adolescents with renal failure were treated with dialysis or renal transplantation in Erlangen. Most patients came with the help of human traffickers and a tourist visa. They often told that they had lost their papers in the excitement. One family received new passports from the trafficker with fake names and birth dates. The families had to pay high amounts of money in order to save their child's life. Although dialysis therapy was often difficult because of lower adherence, the overall course was satisfactory. Four patients have been transplanted successfully so far.
This case study reveals new facets of patient mobility, since leaving home was the only way for the family to ensure their child´s survival. An ethical problems arose, as a chronic dialysis treatment in children seems ethically only justifiable if a kidney transplant is the therapeutic goal. .
终末期肾病患儿行动能力增强以及治疗受限,迫使来自前东欧集团国家的家庭带着孩子逃往德国寻求适当治疗。
在一项案例研究中,对患者病历进行回顾性分析。在结构化访谈中,询问家长和患者关于他们前往德国的路线、治疗情况以及融入情况。
2003年至2013年期间,8名肾衰竭儿童和青少年在埃尔朗根接受透析或肾移植治疗。大多数患者借助人口贩子并持旅游签证前来。他们常称在慌乱中丢失了证件。一个家庭从人口贩子处拿到了带有假名和出生日期的新护照。这些家庭为挽救孩子的生命不得不支付高额费用。尽管由于依从性较低,透析治疗常常困难重重,但总体过程令人满意。到目前为止,已有4名患者成功接受了移植手术。
该案例研究揭示了患者流动的新情况,因为离家是家庭确保孩子生存的唯一途径。出现了一个伦理问题,即如果肾移植是治疗目标,儿童慢性透析治疗在伦理上似乎才是合理的。