Peláez Cantero Maria José, Morales Asencio Jose Miguel, Navarro Marchena Lucia, Velázquez González Maria Del Rosario, Sánchez Echàniz Jesús, Rubio Ortega Laura, Martino Alba Ricardo
Unidad de Crónicos complejos y Cuidados Paliativos pediátricos, Hospital Regional Universitario, Materno-Infantil de Málaga, Facultad de Ciencias de la Salud, Universidad de Málaga, Málaga, España.
Facultad de Ciencias de la Salud, Universidad de Málaga, Instituto de Investigación biomédica de Málaga (IBIMA), Málaga, España.
An Pediatr (Engl Ed). 2021 Jul 21. doi: 10.1016/j.anpedi.2021.06.012.
Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain.
Retrospective, descriptive, multicentre study. Fourteen teams from all over the country participated.
Data were obtained from 164 patients. In most cases the underlying disease stemmed from oncological, neurological or neuromuscular processes. The median age at death was 6.9 years (RIC 11.2). The median follow-up time by the team was 0.3 years (RIC 0.8 years). The most frequent symptoms in the last week of life were dyspnoea, pain, increased secretions and sleep disorders. The median number of drugs administered to each patient one week prior to death was 6 (RIC 4). The place of death for 95 of the patients (57.9%) was hospital while 67 (40.9%) died at home.
There was a wide age range of patients and they had substantial exposure to polypharmacy. The follow-up time shows that patients have late access to palliative care programmes. An effort should be made to introduce this care earlier rather than relegating it to the end of life. In Spain there is an unequal distribution of resources and not all teams can provide care at home. The place of death should be interpreted with caution.
在西班牙，每年约有2000名儿童和青少年死亡，然而，我们对儿科死亡的特殊性知之甚少。本研究的目的是记录在西班牙接受儿科姑息治疗团队护理期间死亡患者的特征。
回顾性、描述性多中心研究。来自全国各地的14个团队参与其中。
获取了164例患者的数据。在大多数情况下，潜在疾病源于肿瘤、神经或神经肌肉疾病。死亡时的中位年龄为6.9岁（四分位距11.2）。团队的中位随访时间为0.3年（四分位距0.8年）。生命最后一周最常见的症状是呼吸困难、疼痛、分泌物增多和睡眠障碍。每位患者在死亡前一周使用的药物中位数为6种（四分位距4）。95例患者（57.9%）在医院死亡，67例（40.9%）在家中死亡。
患者年龄范围广泛，且大量使用多种药物。随访时间表明患者较晚才获得姑息治疗项目。应努力更早地引入这种护理而非将其推迟到生命末期。在西班牙，资源分配不均，并非所有团队都能提供居家护理。对死亡地点的解读应谨慎。
