Khalid Farah, Chong Lee Ai
Department of Paediatrics, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia.
Indian J Palliat Care. 2019 Jan-Mar;25(1):135-141. doi: 10.4103/IJPC.IJPC_111_18.
The objective of this study was to estimate palliative care needs and to describe the cohort of children with life-limiting illnesses (LLI) dying in hospitals.
This study was a retrospective cohort study. The national hospital admissions database was reviewed and children who had died who had life-limiting illnesses were identified.
This study was conducted at Ministry of Health hospitals, Malaysia.
Children aged 18 years and below who had died between January 1, 2012 and December 31, 2014.
Life-limiting diagnoses based on Hain 's directory of LLI or the ACT/RCPCH categories of life-limiting disease trajectories.
There were 8907 deaths and 3958 (44.4%) were that of children with LLI. The majority, 2531 (63.9%) of children with LLI were neonates, and the most common diagnosis was extreme prematurity <28 weeks with 676 children (26.7%). For the nonneonatal age group, the median age at admission was 42 months (1-216 months). A majority, 456 (32.0%) had diagnoses from the ICD-10 chapter "Neoplasms" followed by 360 (25.3%) who had a diagnoses from "Congenital malformations, deformations, and chromosomal abnormalities" and 139 (9.7%) with diagnoses from "Disease of the nervous system." While a majority of the terminal admissions were to the general ward, there were children from the nonneonatal age group, 202 (14.2%) who died in nonpediatric wards.
Understanding the characteristics of children with LLI who die in hospitals could contribute toward a more efficient pediatric palliative care (PPC) service development. PPC service should include perinatal and neonatal palliative care. Palliative care education needs to extend to nonpediatric healthcare providers who also have to manage children with LLI.
本研究的目的是评估姑息治疗需求，并描述在医院死亡的患有危及生命疾病（LLI）的儿童队列。
本研究为回顾性队列研究。查阅了国家医院入院数据库，确定了患有危及生命疾病且已死亡的儿童。
本研究在马来西亚卫生部所属医院开展。
2012年1月1日至2014年12月31日期间死亡的18岁及以下儿童。
根据海恩的LLI目录或ACT/RCPCH的危及生命疾病轨迹类别进行的危及生命诊断。
共有8907例死亡，其中3958例（44.4%）为患有LLI的儿童。大多数患有LLI的儿童为2531例（63.9%）新生儿，最常见的诊断是孕28周前的极早早产，有676例儿童（26.7%）。对于非新生儿年龄组，入院时的中位年龄为42个月（1 - 216个月）。大多数，456例（32.0%）的诊断来自ICD - 10第“肿瘤”章，其次是360例（25.3%）诊断来自“先天性畸形、变形和染色体异常”，139例（9.7%）诊断来自“神经系统疾病”。虽然大多数末期入院患者入住普通病房，但非新生儿年龄组中有202例（14.2%）儿童在非儿科病房死亡。
了解在医院死亡的患有LLI的儿童的特征有助于更有效地开展儿科姑息治疗（PPC）服务。PPC服务应包括围产期和新生儿姑息治疗。姑息治疗教育需要扩展到也必须管理患有LLI儿童的非儿科医疗服务提供者。
