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脑性瘫痪的公共卫生指标:欧洲脑性瘫痪监测网络的一项欧洲合作研究。

Public health indicators for cerebral palsy: A European collaborative study of the Surveillance of Cerebral Palsy in Europe network.

机构信息

CERPOP, UMR 1295 Toulouse University, Inserm, Paul Sabatier University, Toulouse, France.

Childhood Disability Registry in Haute-Garonne, University Hospital of Toulouse, Toulouse, France.

出版信息

Paediatr Perinat Epidemiol. 2023 Jul;37(5):404-412. doi: 10.1111/ppe.12950. Epub 2023 Feb 1.

DOI:10.1111/ppe.12950
PMID:36722642
Abstract

BACKGROUND

Public health indicators (PHIs) play an increasingly important role in health policy decision-making. Although cerebral palsy (CP) is the commonest physical disability in children, its impact at population level has not been systematically measured so far.

OBJECTIVES

We aimed to propose six PHIs for CP designed to annually document the extent of CP and effectiveness of perinatal organisation, the burden of this condition, access to health services and preventive health strategies in the post-neonatal period and to report on the latest updated estimations using population-based data routinely collected by European CP registries.

METHODS

The study included children with CP born between 2002 and 2011. Harmonised data (number of cases, functional profile, imaging) were extracted from the Surveillance of Cerebral Palsy in Europe (SCPE) database. Eligibility criteria for analyses were applied separately for each indicator by selecting registries, birth years and CP cases. Current estimates were based on the last 3 birth years, while trends were reported over a 10-year period. All analyses were descriptive. Sensitivity analyses were carried out to examine the stability of the results using various thresholds of percentages of missing values.

RESULTS

Analyses were performed on a total of 8621 children with CP from 12 to 17 SCPE registries. A decreasing prevalence of pre/perinatal CP overall, as well as in preterm and full-term-born children, was observed. The burden of the condition was strongly dependent on CP subtype and the presence of associated impairments. Access to brain imaging ranged from 80% to 100% depending on registries. The overall prevalence of post-neonatally acquired CP was approximately 0.8 per 10,000 live births over the study period.

CONCLUSIONS

Population-based CP registries can provide data that are relevant for generating key outcomes of interest at the population level, thus potentially contributing to improving public health policies for children with disabilities.

摘要

背景

公共卫生指标(PHIs)在卫生政策决策中发挥着越来越重要的作用。尽管脑瘫(CP)是儿童中最常见的身体残疾,但迄今为止,尚未系统地衡量其对人群的影响。

目的

我们旨在提出 6 项 CP 公共卫生指标,旨在每年记录 CP 的程度和围产期组织的效果、该疾病的负担、在新生儿后期获得卫生服务和预防保健策略的情况,并报告使用欧洲 CP 登记处定期收集的基于人群的数据进行的最新更新估计。

方法

本研究纳入了 2002 年至 2011 年期间出生的 CP 患儿。从欧洲脑瘫监测(SCPE)数据库中提取了协调一致的数据(病例数、功能谱、影像学)。为每个指标分别应用了纳入标准,包括选择登记处、出生年份和 CP 病例。当前的估计值基于最近的 3 个出生年份,而趋势则报告了 10 年期间的情况。所有分析均为描述性分析。进行了敏感性分析,以使用不同百分比缺失值的阈值来检查结果的稳定性。

结果

对来自 12 至 17 个 SCPE 登记处的共 8621 名 CP 患儿进行了分析。总体上,无论是在早产儿还是足月儿中,CP 的患病率均呈下降趋势。疾病负担与 CP 亚型和相关障碍的存在密切相关。脑影像学的获取率因登记处而异,范围在 80%至 100%之间。在研究期间,每 10000 例活产儿中大约有 0.8 例患获得性新生儿期 CP。

结论

基于人群的 CP 登记处可以提供数据,这些数据与在人群层面生成关键结果相关,从而可能有助于改善残疾儿童的公共卫生政策。

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