García-Salido Alberto, Santos-Herranz Paula, Puertas-Martín Verónica, García-Teresa María Ángeles, Martino-Alba Ricardo, Serrano-González Ana
Unidad de Cuidados Intensivos Pediátricos, Hospital Infantil Universitario Niño Jesús, Madrid, España.
Unidad de Cuidados Intensivos Pediátricos, Hospital Virgen de la Salud, Toledo, España.
An Pediatr (Engl Ed). 2018 Jan;88(1):3-11. doi: 10.1016/j.anpedi.2016.11.008. Epub 2017 Apr 17.
The creation of paediatric palliative care units (PPCU) could optimise the management of children with palliative focus after admission to a paediatric intensive care unit (PICU). This study describes the clinical and epidemiological characteristics of children referred from PICU to the PPCU of the Autonomous Community of Madrid (CAM). The overall treatment, relapses, re-admissions, and deaths, if occurred, are described.
A retrospective review was performed using the medical records from children transferred from the CAM paediatric intensive care units to the paediatric palliative care unit (1 March 2008-31 January 2015).
A total of 41 patients were included (26 male/15 female) with a median age of 33 months (range 1-228). In the follow by the PPCU follow-up, the main approaches were respiratory (invasive ventilation with tracheostomy tube 8/41), nutritional (gastrostomy in 20/41), and pharmacological (anti-epileptics in 29/41 and 34/41 on antibiotic treatment). Hospital re-admission was required by 11/41 patients, with no re-admissions to PICU. Of the 13/41 patients who died, 9/13 was at home, with all of them accompanied by the primary caregivers and family, and only 1/9 with the presence of the home team.
The palliative approach at home is feasible in children, and the integration of PPCU could optimise the comprehensive care of previously critically ill children. It is necessary to achieve an optimal domiciliary care should be achieved, and not just because of patient death. More observational, multicentre and prospective studies are needed to confirm these findings.
儿科姑息治疗病房（PPCU）的设立可优化入住儿科重症监护病房（PICU）后以姑息治疗为重点的儿童的管理。本研究描述了从PICU转诊至马德里自治区（CAM）的PPCU的儿童的临床和流行病学特征。描述了总体治疗情况、复发情况、再次入院情况以及死亡情况（如有发生）。
采用从CAM儿科重症监护病房转至儿科姑息治疗病房的儿童的病历进行回顾性研究（2008年3月1日至2015年1月31日）。
共纳入41例患者（男26例/女15例），中位年龄33个月（范围1 - 228个月）。在PPCU随访期间，主要治疗措施包括呼吸支持（8/41例采用带气管造口管的有创通气）、营养支持（20/41例行胃造口术）和药物治疗（29/41例使用抗癫痫药物，34/41例接受抗生素治疗）。11/41例患者需要再次住院，但未再次入住PICU。13/41例死亡患者中，9/13例在家中死亡，均有主要照料者和家人陪伴，其中仅1/9例有家庭护理团队在场。
对儿童而言，在家中进行姑息治疗是可行的，PPCU的整合可优化对先前危重症儿童的综合护理。有必要实现最佳的居家护理，而不仅仅是因为患者死亡。需要更多的观察性、多中心和前瞻性研究来证实这些发现。
