Unidad de Crónicos Complejos y Cuidados Paliativos Pediátricos, Hospital RegionalUniversitario, Materno-Infantil de Málaga, Facultad de Ciencias de la Salud, Universidad de Málaga, Málaga, Spain.
Facultad de Ciencias de la Salud, Universidad de Málaga, Instituto de Investigación Biomédica de Málaga (IBIMA), Málaga, Spain.
An Pediatr (Engl Ed). 2022 May;96(5):394-401. doi: 10.1016/j.anpede.2022.04.008. Epub 2022 May 20.
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.
每年约有 2000 名儿童和青少年在西班牙死亡，但我们对儿科死亡的特殊性知之甚少。本研究旨在记录在西班牙儿科姑息治疗团队护理下死亡的患者的特征。
回顾性、描述性、多中心研究。来自全国各地的 14 个团队参与了该研究。
从 164 名患者中获得了数据。大多数情况下，基础疾病源于肿瘤、神经或神经肌肉过程。死亡时的中位年龄为 6.9 岁（RIC 11.2）。团队中位随访时间为 0.3 年（RIC 0.8 年）。生命最后一周最常见的症状是呼吸困难、疼痛、分泌物增加和睡眠障碍。每位患者在死亡前一周接受的药物中位数为 6 种（RIC 4）。95 名患者（57.9%）的死亡地点是医院，而 67 名患者（40.9%）在家中死亡。
患者的年龄范围很广，他们接受了大量的多药治疗。随访时间表明，患者接受姑息治疗方案的时间较晚。应努力更早地引入这种护理，而不是将其推迟到生命的尽头。在西班牙，资源分布不均，并非所有团队都能在家中提供护理。死亡地点的解读应谨慎。
