Oskoui Maryam, Ng Pamela, Dorais Marc, Pigeon Nicole, Koclas Louise, Lamarre Céline, Malouin Francine, Richards Carol L, Shevell Michael, Joseph Lawrence
Affiliations: Departments of Pediatrics, Neurology and Neurosurgery (Oskoui, Shevell), McGill University; Research Institute of the McGill University Health Centre (Ng), Montréal, Que.; StatSciences Inc. (Dorais), Notre-Dame-de-l'Île-Perrot, Que.; Centre hospitalier universitaire de Sherbrooke (Pigeon), Sherbrooke, Que.; Centre de réadaptation Marie-Enfant (Koclas), Centre hospitalier universitaire Sainte-Justine; Institut de réadaptation Gingras-Lindsay de Montréal (Lamarre), Centre intégré universitaire de santé et de services sociaux du Centre-Est-de-l'Île-de-Montréal, Montréal, Que.; Département de réadaptation and Centre interdisciplinaire de recherche en réadaptation et intégration sociale (Malouin, Richards), Université Laval, Québec, Que.; Department of Epidemiology, Biostatistics and Occupational Health (Joseph), McGill University, Montréal, Que.
CMAJ Open. 2017 Jul 18;5(3):E570-E575. doi: 10.9778/cmajo.20170013.
Cerebral palsy is the most common cause of childhood physical disability, with multiple associated comorbidities. Administrative claims data provide population-level prevalence estimates for cerebral palsy surveillance; however, their diagnostic accuracy has never been validated in Quebec. This study aimed to assess the accuracy of administrative claims data for the diagnosis of cerebral palsy.
We conducted a retrospective cohort study of children with cerebral palsy born between 1999 and 2002 within 6 health administrative regions of Quebec. Provincial cerebral palsy registry data (reference standard) and administrative physician claims were linked. We explored differences between true-positive and false-negative cases using subgroup sensitivity analysis.
A total of 301 children were identified with confirmed cerebral palsy from the provincial registry, for an estimated prevalence of 1.8 (95% confidence interval [CI] 1.6-2.1) per 1000 children 5 years of age. The sensitivity and specificity of administrative claims data for cerebral palsy were 65.5% (95% CI 59.8%-70.8%) and 99.9% (95% CI 99.9%-99.9%), respectively, yielding a prevalence of 2.0 (95% CI 1.9-2.3) per 1000 children 5 years of age. The positive and negative predictive values were 58.8% (95% CI 53.3%-64.1%) and 99.9% (95% CI 99.9%-99.9%), respectively. The κ value was 0.62 (95% CI 0.57-0.67). Administrative claims data were more sensitive for children from rural regions, born preterm, with spastic quadriparesis and with higher levels of motor impairment.
Administrative claims data do not capture the full spectrum of children with cerebral palsy. This suggests the need for a more sensitive case definition and caution when using such data without validation.
脑瘫是儿童身体残疾最常见的原因，伴有多种合并症。行政索赔数据为脑瘫监测提供了人群水平的患病率估计；然而，其诊断准确性在魁北克从未得到验证。本研究旨在评估行政索赔数据对脑瘫诊断的准确性。
我们对1999年至2002年在魁北克6个卫生行政区域出生的脑瘫儿童进行了一项回顾性队列研究。将省级脑瘫登记数据（参考标准）与行政医生索赔数据进行关联。我们使用亚组敏感性分析探讨真阳性和假阴性病例之间的差异。
从省级登记处共确认301名儿童患有脑瘫，估计每1000名5岁儿童中的患病率为1.8（95%置信区间[CI]1.6 - 2.1）。行政索赔数据对脑瘫的敏感性和特异性分别为65.5%（95%CI 59.8% - 70.8%）和99.9%（95%CI 99.9% - 从省级登记处共确认301名儿童患有脑瘫，估计每1000名5岁儿童中的患病率为1.8（95%置信区间[CI]1.6 - 2.1）。行政索赔数据对脑瘫的敏感性和特异性分别为65.5%（95%CI 59.8% - 70.8%）和99.9%（95%CI 99.9% - 99.9%），每1000名5岁儿童中的患病率为2.0（95%CI 1.9 - 2.3）。阳性预测值和阴性预测值分别为58.8%（95%CI 53.3% - 64.1%）和99.9%（95%CI 99.9% - 99.9%）。κ值为0.62（95%CI 0.57 - 0.67）。行政索赔数据对农村地区、早产、患有痉挛性四肢瘫和运动障碍程度较高的儿童更敏感。
行政索赔数据未能涵盖所有脑瘫儿童。这表明需要一个更敏感的病例定义，并且在未经验证的情况下使用此类数据时要谨慎。 99.9%），每1000名5岁儿童中的患病率为2.0（95%CI 1.9 - 2.3）。阳性预测值和阴性预测值分别为58.8%（95%CI 53.3% - 64.1%）和99.9%（95%CI 99.9% - 99.9%）。κ值为0.62（95%CI 0.57 - 0.67）。行政索赔数据对农村地区、早产、患有痉挛性四肢瘫和运动障碍程度较高的儿童更敏感。
行政索赔数据未能涵盖所有脑瘫儿童。这表明需要一个更敏感的病例定义，并且在未经验证的情况下使用此类数据时要谨慎。
