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欧洲儿科维持性血液透析相关立法框架及国家建议调查

Survey of legislative frameworks and national recommendations governing paediatric maintenance haemodialysis in Europe.

作者信息

Vedrine Enzo, Schmitt Claus Peter, Walle Johan Vande, Shtiza Diamant, Arbeiter Klaus, Snauwaert Evelien, Pokrajac Danka, Roussinov Dimitar, Milosevic Danko, Avraam Elia, Zieg Jakub, Schmidt Ida Maria, Toots Ylle, Holtta Tuula, Klaus Günter, Askiti Varvara, Tory Kalman, Sweeney Clodagh, Verrina Enrico, Jeruma Edite, Jankauskiene Augustina, Conti Valerie Said, Lutovac Branko, Koster-Kamphuis Linda, Tasic Velibor, Bjerre Anna Kristina, Szczepańska Maria, Afonso Alberto Caldas, Rãchişan Andreea Liana, Spasojevic Brankica, Janko Victor, Novljan Gregor, Ortega Pedro J, Sartz Lisa, Tschumi Sibylle, Bakkaloglu Sevcan Azime, Dudley Jan, Ivanov Dymtro D, Shroff Rukshana, Ranchin Bruno

机构信息

Centre de Référence des Maladies Rénales Rares, Hôpital Femme Mère Enfant, Hospices Civils de Lyon, 59 boulevard Pinel, 69677, Bron Cedex, France.

Center for Pediatric and Adolescent Medicine, University Hospital Heidelberg, Heidelberg, Germany.

出版信息

Pediatr Nephrol. 2025 Jun;40(6):2043-2051. doi: 10.1007/s00467-025-06667-8. Epub 2025 Jan 23.

Abstract

BACKGROUND

The application of international recommendations for paediatric maintenance haemodialysis (HD) could be strengthened by national laws or written recommendations. Our aim was therefore to describe the national rules governing paediatric maintenance HD in European countries.

METHODS

A national representative, approved by the president of each paediatric nephrology society, was contacted in all 42 European countries to complete two online questionnaires.

RESULTS

Answers were received from 36 countries. The population served by HD centres varies from 83,000 to 1,197,000 residents below 18 years of age and the estimated mean number of children on HD per centre from 0.2 to 13.5. The lowest age at which a child can be dialysed in an adult centre varies from 0 to 18 years. Laws or written national recommendations specifying: this age, the need for a paediatrician as part of medical team in mixed adult-paediatric centres, the minimum number of doctors per centre and the number of patients per nurse or nurse's aide required during sessions exist in only 25, 22, 22, 44 and 8% of the countries, respectively. Similarly, dietitians, social workers, school service, psychologists and play specialists/youth workers are required by law or written national recommendations in 36, 28, 36, 31 and 14% of countries, respectively.

CONCLUSION

Laws or written national recommendations for paediatric maintenance HD are rare in European countries and very heterogeneous when they exist. This calls for discussion among paediatric and adult nephrologists and health authorities on the organisation of safe and effective paediatric HD practices.

摘要

背景

国家法律或书面建议可加强国际小儿维持性血液透析(HD)建议的应用。因此,我们的目的是描述欧洲国家管理小儿维持性HD的国家规则。

方法

联系了42个欧洲国家中每个小儿肾脏病学会主席批准的国家代表,以完成两份在线问卷。

结果

收到了36个国家的回复。HD中心服务的人群为83000至1197000名18岁以下居民,每个中心接受HD治疗的儿童估计平均数为0.2至13.5。儿童在成人中心开始透析的最低年龄从0岁到18岁不等。分别仅有25%、22%、22%、44%和8%的国家有法律或书面国家建议规定了这个年龄、在成人与小儿混合中心作为医疗团队一部分的儿科医生的必要性、每个中心的医生最少数量以及透析期间每个护士或助理护士所需护理的患者数量。同样,分别有36%、28%、36%、31%和14%的国家通过法律或书面国家建议要求配备营养师、社会工作者、学校服务人员、心理学家和游戏专家/青年工作者。

结论

欧洲国家关于小儿维持性HD的法律或书面国家建议很少,且存在时差异很大。这需要儿科和成人肾脏病学家以及卫生当局就安全有效的小儿HD实践的组织进行讨论。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/4c9a/12031754/1b8753b21cb2/467_2025_6667_Figa_HTML.jpg

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