Department of Pediatrics (J.F.B.), Division of Bioethics and Palliative Care, University of Washington School of Medicine; Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA, USA.
Biostatistics (B.S., M.C.B., J.M.G.), Epidemiology and Analytics in Research (BEAR) Core, Seattle Children's Research Institute, Seattle, WA, USA.
J Pain Symptom Manage. 2024 Nov;68(5):488-498.e1. doi: 10.1016/j.jpainsymman.2024.07.034. Epub 2024 Aug 2.
Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL).
To examine hospital performance on EOL quality measures and to describe healthcare services during the last two years of life for children with CCCs who died in-hospital.
Retrospective automated electronic health record review of children with ≥1 CCC ICD-10 diagnosis code, who died inpatient between October 2020 and March 2023 at a single quaternary U.S. children's hospital. Quality was assessed based on performance on 15 measures across five domains: healthcare utilization, interprofessional supports, medical intensity, symptom management, and communication. Quality EOL care and healthcare services in the last two years of life were determined overall by age group and per patient. Descriptive statistics were used to evaluate demographic differences by age.
266 children with CCCs died in the study timeframe; 45% were infants (n = 120), 52% (n = 137) were male, 42% (n = 113) were white, 64% (n = 170) were non-Hispanic, and 59% (n=156) had public insurance. Children had a median of three CCCs (IQR 2.4; range 1-8). On average, children met 69% (SD 13%) of EOL quality measures for which they were eligible. In the two years prior to death, 98% (n = 261) had an ICU admission, 75% (n = 200) had a procedure requiring sedation, and 29% (n = 79) had received cardiopulmonary resuscitation. 86% (n = 229) died in the ICU.
In this study, children with CCCs met 69% of quality measures and received high-intensity healthcare in the last two years of life.
关于患有复杂慢性病（CCC）的儿童在疾病末期和生命终末期（EOL）接受的护理，数据有限。
检查 EOL 质量指标的医院绩效，并描述患有 CCC 且在院内死亡的儿童在生命最后两年的医疗保健服务。
回顾性自动电子健康记录审查，纳入 2020 年 10 月至 2023 年 3 月期间在美国一家四级儿童医院住院死亡的至少有 1 个 CCC ICD-10 诊断代码的儿童。质量评估基于五个领域的 15 项措施的表现：医疗保健利用、跨专业支持、医疗强度、症状管理和沟通。整体上按年龄组和每位患者确定生命最后两年的 EOL 护理和医疗保健服务质量。按年龄使用描述性统计数据评估人口统计学差异。
在研究期间，266 名患有 CCC 的儿童死亡；45%为婴儿（n=120），52%为男性（n=137），42%为白人（n=113），64%为非西班牙裔（n=170），59%（n=156）有公共保险。儿童平均患有三种 CCC（中位数 2.4，IQR 2.4；范围 1-8）。平均而言，符合 EOL 质量标准的儿童占合格人数的 69%（SD 13%）。在死亡前两年，98%（n=261）有 ICU 入院，75%（n=200）有需要镇静的程序，29%（n=79）接受过心肺复苏。86%（n=229）在 ICU 死亡。
在这项研究中，患有 CCC 的儿童符合 69%的质量标准，并在生命的最后两年接受了高强度的医疗保健。
