Identifying cerebral palsy from routinely-collected data in England and Wales

Abstract

Purpose: 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.

Patients and methods: 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.

Results: 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.

Conclusion: 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.

Keywords:

• chronic conditions
• CPRD
• SAIL
• coding
• data-linkage

Acknowledgments

This research was commissioned by the healthcare Quality Improvement Partnership (HQIP). The HQIP is led by a consortium of the Academy of Medical Royal Colleges, the Royal College of Nursing and National Voices. Its aim is to promote quality improvement in patient outcomes, and in particular, to increase the impact that clinical audit, outcome review programs and registries have on health care quality in England and Wales. HQIP holds the contract to commission, manage, and develop the National Clinical Audit and Patient Outcomes Programme (NCAPOP), comprising around 40 projects covering care provided to people with a wide range of medical, surgical, and mental health conditions. The programme is funded by NHS England, the Welsh Government and, with some individual projects, other devolved administrations and crown dependencies. www.hqip.org.uk/national-programmes. We would like to thank Sarah Rees and Ashley Akbari from the SAIL Databank team for their contribution to the design and creation of the Wales dataset used in this research. This research was commissioned by the healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England, NHS Wales, the Health and Social care division of the Scottish government, The Northern Ireland Department of Health, and the States of Jersey, Guernsey, and the Isle of Man.

Other information

Study protocols for the wider study are available upon request.

Disclosure

The authors report no conflicts of interest in this work.

Supplementary material

Table S1 ICD 10 and corresponding Read v2 codes for cerebral palsy diagnosis