Children's Health Program, IWK Health Centre, Halifax, Nova Scotia, Canada.
School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada.
BMJ Open. 2022 Mar 18;12(3):e057843. doi: 10.1136/bmjopen-2021-057843.
Children with medical complexity and their families are an important population of interest within the Canadian healthcare system. Despite representing less than 1% of the paediatric population, children with medical complexity require extensive care and account for one third of paediatric healthcare expenditures. Opportunities to conduct research to assess disparities in care and appropriate allocation of health resources relies on the ability to accurately identify this heterogeneous group of children. This study aims to better understand the population of children with medical complexity in the Canadian Maritimes, including Nova Scotia (NS), New Brunswick (NB) and Prince Edward Island (PEI). This will be achieved through three objectives: (1) Evaluate the performance of three algorithms to identify children with medical complexity in the Canadian Maritimes in administrative data; then using the 'best fit' algorithm (2) Estimate the prevalence of children with medical complexity in the Canadian Maritimes from 2003 to 2017 and (3) Describe patterns of healthcare utilisation for this cohort of children across the Canadian Maritimes.
The research will be conducted in three phases. In Phase 1, an expert panel will codevelop a gold-standard definition of paediatric medical complexity relevant to the Canadian Maritime population. A two-gate validation process will then be conducted using NS data and the gold-standard definition to determine the 'best fit' algorithm. During phase 2 the 'best fit' algorithm will be applied to estimate the prevalence of children with medical complexity in NS, NB and PEI. Finally, in phase 3 will describe patterns of healthcare utilisation across the Canadian Maritimes.
Ethics approval for this protocol was granted by the institutional research ethics board at the IWK Health Centre (REB # 1026245). A waiver of consent was approved. This study will use an integrated knowledge translation approach, where end users are involved in each stage of the project, which could increase uptake of the research into policy and practice. The findings of this research study will be submitted for publication and dissemination through conference presentations and with our end users.
患有复杂疾病的儿童及其家庭是加拿大医疗保健系统中一个重要的关注群体。尽管他们只占儿科人口的不到 1%，但患有复杂疾病的儿童需要广泛的护理，占儿科医疗支出的三分之一。有机会进行研究以评估护理差距和适当分配卫生资源，这依赖于准确识别这一异质儿童群体的能力。本研究旨在更好地了解加拿大海洋省份（包括新斯科舍省（NS）、新不伦瑞克省（NB）和爱德华王子岛（PEI））的患有复杂疾病的儿童群体。这将通过三个目标来实现：（1）评估三种算法在加拿大海洋省份的行政数据中识别患有复杂疾病的儿童的性能；然后使用“最佳拟合”算法；（2）估计 2003 年至 2017 年期间加拿大海洋省份患有复杂疾病的儿童的患病率；（3）描述该队列儿童在整个加拿大海洋省份的医疗利用模式。
研究将分三个阶段进行。在第一阶段，一个专家小组将共同制定一个与加拿大海洋人口相关的儿科医学复杂性黄金标准定义。然后，使用 NS 数据和黄金标准定义进行双门验证过程，以确定“最佳拟合”算法。在第二阶段，将应用“最佳拟合”算法来估计 NS、NB 和 PEI 患有复杂疾病的儿童的患病率。最后，在第三阶段，将描述加拿大海洋省份的医疗利用模式。
该方案的伦理批准已获得 IWK 健康中心机构研究伦理委员会的批准（REB#1026245）。已批准放弃同意。本研究将采用综合知识转化方法，让最终用户参与项目的每个阶段，这可能会增加研究在政策和实践中的应用。本研究的发现将通过会议演讲和与最终用户一起提交发表和传播。
