Carter Bethan, Verity Bennett C, Bethel Jackie, Jones Hywel M, Wang Ting, Kemp Alison
Division of Population Medicine, School of Medicine, Cardiff University, Cardiff, UK.
Swansea Medical School, Swansea University, Swansea, UK.
Clin Epidemiol. 2019 Jun 5;11:457-468. doi: 10.2147/CLEP.S200748. eCollection 2019.
An observational study using routinely-collected health care data to describe the extent to which children and young people (CYP) with cerebral palsy (CP) can be identified and the prevalence of CP can be estimated. Routinely-collected anonymized data, for CYP (aged 0-25 years old between 1 January 2004 and 31 December 2014) were analyzed in two linked datasets, from England and Wales respectively. Datasets included National Health Service; General Practitioner (GP), inpatients, outpatients, and national mortality records. CP was identified using ICD-10 codes G80.0-G83.3 and equivalent Read v2 codes. Ascertainment rates of CP were identified for each data source and compared between countries. Frequency and consistency of coding were investigated, and prevalence of CP estimated. A total of 7,113 and 5,218 CYP with CP were identified in the English and Welsh datasets respectively. Whilst the majority of CYP with CP would be expected to attend their GP, 65.3% (4,646/7,113) of English and 65.1% (3,396/5,218) of Welsh cases were ascertained from GP datasets. Further cases were identified solely in inpatient datasets (2,410 in England, 1,813 in Wales). Few cases were coded for CP within outpatient datasets. Four character codes that specified CP type were rarely used; one in five health care records were coded both with G80 codes (explicitly CP) and with G81-83 codes (other paralytic syndromes) or equivalent Read codes. Estimated period prevalence of CYP with CP was 2.5-3.4 per 1,000 in England and 2.4-3.2 per 1,000 in Wales. In England and Wales, coding of CP in routine data is infrequent, inconsistent, non-specific, and difficult to isolate from conditions with similar physical signs. Yet the prevalence estimates of CP were similar to those reported elsewhere. To optimize case recognition we recommend improved coding quality and the use of both primary and secondary care datasets as a minimum.
一项观察性研究利用常规收集的医疗保健数据，以描述能够识别脑瘫（CP）患儿和青少年（CYP）的程度以及估算CP的患病率。对2004年1月1日至2014年12月31日期间年龄在0至25岁的CYP常规收集的匿名数据，分别在来自英格兰和威尔士的两个关联数据集中进行分析。数据集包括国民医疗服务体系；全科医生（GP）、住院患者、门诊患者以及国家死亡记录。使用国际疾病分类第十版（ICD - 10）编码G80.0 - G83.3及等效的Read v2编码来识别CP。确定每个数据源中CP的确诊率并在不同国家之间进行比较。研究编码的频率和一致性，并估算CP的患病率。在英格兰和威尔士的数据集中分别识别出7113名和5218名患有CP 的CYP。虽然预计大多数患有CP的CYP会去看全科医生，但英格兰65.3%（4646/7113）以及威尔士65.1%（3396/5218）的病例是从全科医生数据集中确诊的。更多病例仅在住院患者数据集中被识别（英格兰有2410例，威尔士有1813例）。门诊患者数据集中很少有病例被编码为CP。指定CP类型的四位编码很少使用；五分之一的医疗保健记录同时使用G80编码（明确为CP）和G81 - 83编码（其他麻痹综合征）或等效的Read编码。英格兰每1000名CYP中CP的估计期间患病率为2.5 - 3.4，威尔士为2.4 - 3.2。在英格兰和威尔士，常规数据中CP的编码不常见、不一致、不具体，并且难以与具有相似体征的病症区分开来。然而，CP的患病率估计与其他地方报告的相似。为了优化病例识别，我们建议至少提高编码质量并同时使用初级和二级医疗保健数据集。
