Infants, children, youth and young adults with a serious illness in British Columbia: a population-based analysis using linked administrative data.

CMAJ open Pub Date : 2023-12-05 Print Date: 2023-11-01 DOI:10.9778/cmajo.20220181
Elisa Castro Noriega, Harold Siden, M Ruth Lavergne
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Abstract

Background: Pediatric palliative care aims to improve quality of life among infants, children, youth and young adults with serious illnesses, sometimes over years, but estimates of infants, children, youth and young adults requiring pediatric palliative care have been highly variable and need refinement. We sought to describe this population in British Columbia and identify clinical instability to inform program planning in pediatric palliative care.

Methods: We conducted a population-based analysis using linked administrative health data from 2012/13 to 2016/17. We applied a coding framework validated in the United Kingdom to estimate the number of BC residents aged 0-25 years with serious illnesses and to identify 5 clinical stages. We describe demographics, estimate prevalence and model risk of instability, defined as having urgent hospital admissions, admissions to the intensive care unit or death.

Results: About 2500 infants, children, youth and young adults were admitted to hospital with a serious illness diagnosis each study year, of which around 50% were infants, 60% or so of whom had perinatal or congenital diagnoses. Compared with children aged 1-4 years, infants had the highest risk of instability (odds ratio [OR] 6.59, 95% confidence interval [CI] 5.97-7.29). Compared with oncology patients, infants, children, youth and young adults with neurological (OR 1.43, 95% CI 1.21-1.70) and otherwise specified diagnoses (OR 1.55, 95% CI 1.39-1.73) had a higher risk of instability.

Interpretation: The population of infants, children, youth and young adults with serious illnesses in BC is substantially larger than that currently receiving pediatric palliative care. Future planning of these services needs to consider expanding its reach, focusing particularly on infants and other subpopulations with high risk of instability.

不列颠哥伦比亚省患有严重疾病的婴儿、儿童、青少年和年轻成人:利用关联行政数据进行的人口分析。
背景:儿科姑息关怀旨在改善患有严重疾病的婴儿、儿童、青少年和年轻成人的生活质量,有时需要数年的时间,但对需要儿科姑息关怀的婴儿、儿童、青少年和年轻成人的估计一直存在很大差异,需要进一步完善。我们试图描述不列颠哥伦比亚省的这一人群,并确定临床不稳定性,为儿科姑息关怀的项目规划提供信息:我们使用 2012/13 年至 2016/17 年的关联行政健康数据进行了一项基于人群的分析。我们采用在英国得到验证的编码框架来估算不列颠哥伦比亚省 0-25 岁患有严重疾病的居民人数,并确定 5 个临床阶段。我们描述了人口统计学特征,估计了患病率,并建立了不稳定风险模型,不稳定风险被定义为紧急入院、入住重症监护室或死亡:每个研究年度约有 2500 名婴儿、儿童、青少年和年轻人因被诊断患有严重疾病而入院,其中约 50% 是婴儿,60% 左右是围产期或先天性疾病。与 1-4 岁的儿童相比,婴儿的病情不稳定风险最高(几率比 [OR] 6.59,95% 置信区间 [CI] 5.97-7.29)。与肿瘤患者相比,患有神经系统疾病(OR 1.43,95% CI 1.21-1.70)和其他特定诊断(OR 1.55,95% CI 1.39-1.73)的婴儿、儿童、青少年和年轻成人的病情不稳定风险更高:不列颠哥伦比亚省患有严重疾病的婴儿、儿童、青少年和年轻人的数量远远大于目前接受儿科姑息关怀的人数。这些服务的未来规划需要考虑扩大其覆盖范围,尤其要关注婴儿和其他不稳定风险较高的亚人群。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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