Riaño Galán I, Málaga Guerrero S
Sección de Nefrología Pediátrica, Hospital Central de Asturias, Oviedo.
An Esp Pediatr. 1998 Jan;48(1):33-8.
The purpose of this study was to know the current practices of Spanish pediatric nephrologists concerning the inclusion or not of children with end-stage renal disease (ESRD) in programs of dialysis and transplantation in order to open a discussion on the topic that would allow a consensus to be reached.
A descriptive and prospective study using an anonymously mailed survey to 90 members of the Spanish Pediatric Nephrology Association was carried out.
The index of response was 43%. In 90% of the physicians polled they believe that some situations exist where it is advisable not to include a child with ERF in dialysis and, although all assure that there are no written procedures, a large majority (85%) think that they should exist, at least in the most representative cases. Serious physical and/or intellectual handicap and poor prognosis constitute the most important factors for making a decision. The expressed desire of the parents is considered the third most important factor by 56%. Of the answers, 82% placed economic cost of the substituting treatments as least important. Ninety-two percent think that not always and not in all cases is it necessary to turn to all possible technical means to extend the life. More than half (54%) think that the last decision must be taken by the physician and the family, although 44% confer this power to the Ethical Committee.
It would be useful to develop guidelines to help pediatric nephrologists and/or ethical committees to decide, with the family of the patient, about the inclusion of the child in ESRD in programs of dialysis and transplantation.
本研究旨在了解西班牙儿科肾脏病学家在终末期肾病（ESRD）患儿是否纳入透析和移植项目方面的当前做法，以便就该主题展开讨论并达成共识。
开展一项描述性前瞻性研究，通过匿名邮寄调查问卷的方式对西班牙儿科肾脏病协会的90名成员进行调查。
回复率为43%。在接受调查的医生中，90%认为存在某些情况下不宜将患有终末期肾衰竭的儿童纳入透析，尽管所有人都保证没有书面程序，但绝大多数（85%）认为至少在最具代表性的病例中应该有书面程序。严重的身体和/或智力障碍以及预后不良是做出决定的最重要因素。56%的人认为父母表达的意愿是第三重要的因素。在所有回答中，82%认为替代治疗的经济成本最不重要。92%的人认为并非总是且并非在所有情况下都有必要采用所有可能的技术手段来延长生命。超过一半（54%）的人认为最终决定必须由医生和家庭做出，尽管44%将此权力赋予伦理委员会。
制定指导方针将有助于儿科肾脏病学家和/或伦理委员会与患者家属就将ESRD患儿纳入透析和移植项目做出决定。
