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[在欧洲大都市地区纽伦堡的医学谷建立专业化儿科姑息家庭护理]

[Establishment of Specialized Pediatric Palliative Home Care in the Medical Valley of the European Metropolitan Area Nuremberg].

作者信息

Hébert Steven, Gravou-Apostolatou Chara, Rascher Wolfgang

机构信息

Kinder und Jugendklinik des Universitätsklinikums Erlangen-Nürnberg, Friedrich-Alexander-Universität Erlangen-Nurnberg, Erlangen.

出版信息

Klin Padiatr. 2017 Mar;229(2):82-87. doi: 10.1055/s-0043-103414. Epub 2017 Apr 25.

Abstract

As part of the 2007 health reform in Germany the structure of outpatient palliative care for children and adolescents was adopted for the first time and then implemented in Erlangen-Nuremberg in 2009. The introduction of Pediatric Palliative Home Care (PPHC) at the Hospital for Children and Adolescents at the University of Erlangen-Nuremberg was retrospectively analyzed between the years 2009 to 2014. Referring medical records (paper-based and electronic) were evaluated systematically. Considering 69 patients within this study, 44 (63.8%) died during the investigated period and 61% of these Patients deceased at home. 60 patients (87%) had a written emergency plan, which was jointly developed with patients and particularly their parents and relatives in cooperation with the PPHC team. Over the years and with increasing experience, the number and duration of emergency hospitalization decreased. Even complex therapies, such as patient-controlled analgesia with PCA pump could be implemented on an outpatient basis. The descriptive cohort study demonstrates that palliative care for children, despite the medical and structural complexity is possible in an ambulatory setting. It allows a similar, if not better care, compared to inpatient palliative care for children and adolescents, not only for the affected patients, but also for their families.

摘要

作为2007年德国医疗改革的一部分,儿童和青少年门诊姑息治疗结构首次被采用,随后于2009年在埃尔朗根 - 纽伦堡实施。对2009年至2014年间埃尔朗根 - 纽伦堡大学儿童医院引入儿科姑息家庭护理(PPHC)的情况进行了回顾性分析。系统评估了转诊病历(纸质和电子)。本研究纳入69例患者,其中44例(63.8%)在调查期间死亡,这些患者中有61%在家中去世。60例患者(87%)有书面应急预案,该预案是由患者特别是其父母和亲属与PPHC团队合作共同制定的。多年来,随着经验的增加,急诊住院的次数和时长都有所减少。即使是复杂的治疗,如使用PCA泵进行患者自控镇痛,也可以在门诊进行。这项描述性队列研究表明,尽管医疗和结构复杂,但儿童姑息治疗在门诊环境中是可行的。与儿童和青少年住院姑息治疗相比,它不仅能为受影响的患者,也能为其家庭提供类似甚至更好的护理。

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