BINOCAR (British Isles Network of Congenital Anomaly Registers) 2014 Scientific meeting

1. Feasibility of linkage between the CRANE Database and the National Pupil Database (NPD) to explore long term educational outcomes in children with a cleft lip and/or palate BINOCAR (British Isles Network of Congenital Anomaly Registers) 2014 Scientific meeting Jibby Medina On behalf of Lynn Copley, Scott Deacon & Jan van der Meulen CRANE team, Clinical Effectiveness Unit, Royal College of Surgeons of England

2. Topics • Background: CRANE database and characteristics of patients registered • CRANE Outcomes Data Collected • Hospital Episode Statistics (HES) • Introduction to National Pupil Database (NPD) • Linkage & Initial Rates • Future Aims & Objectives • Summary

3. Background: CRANE Database • CRANE Database • National register and treatment outcomes database • Children born with a cleft lip and/or palate • Approx 1 in 650 live births • Data collected by 15 Administrative Centres • England, Wales & Northern Ireland

4. Background: Cleft lip and/or palate • Common birth defect affecting a variety of functions • Speech and hearing • Dental and psychosocial health • Surgery to repair cleft • Primary usually within the 1st year • Further surgery as required – to improve appearance & function • Non-surgical interventions • Speech and language therapy and psychological support • Multi-disciplinary care from birth to adulthood

5. Background: Cleft types Cleft lip (CL) 23% Cleft palate (CP) 45% Unilateral cleft lip and palate (UCLP) 22% Bilateral cleft lip and palate (BCLP) 10%

6. Background: Additional anomalies • Syndromic/non-syndromic classification – made according to presence or absence of specified additional anomalies • Obtained through linking to diagnosis information in Hospital Episode Statistics (HES) • 20% of cleft patients syndromic – varying by cleft type

7. CRANE Outcomes CRANE currently collects information on outcomes at 5 years of age including: • Height & weight • Speech outcomes (not CL patients) • Dental health outcomes • Index of facial growth (complete UCLP cases only) Educational results could be viewed as overarching outcome of the success of treatment

8. CRANE Outcomes Data https://www.crane-database.org.uk/

9. Hospital Episode Statistics (HES) • National database containing records on all admissions to NHS hospitals in England • 1989/90 onwards • Unique patient identifier available from 1997/98 • Diagnostic information • International Classification of Disease 10th revision (ICD-10) • Cleft diagnosis (ICD-10 codes Q35, Q36, Q37) • Procedure information • Classification of Surgical Operations and Procedures 4th Revision (OPCS-4) • Primary cleft repair (OPCS-4 codes F031, F291)

10. National Pupil Database (NPD) • National database containing records on all pupils in England • 1995/96 onwards and contains: • IDs: Pupil, school & LA identifiers • Fixed pupil characteristics: Gender and age, English as an additional language, ethnicity. • Time-varying pupil characteristics: Free school meals eligibility, special educational needs classification, geocodes (postcode and SOA), deprivation, other pupil indicators (year, status, boarder, part-time, entry-date). • Key stage test results and other attainment data: At the ages of five (Early years foundation stage profile) seven (KS1), eleven (KS2) 14 (KS3), 16 (KS4 or GCSE) and 18 (KS5). • School type characteristics: Describing the school the pupil attends at each sweep of the census. • Initial year for which Key Stage (KS) attainment data 1st collected varies according to examination of interest • E.g. KS2 (age 11) data 1st collected in 1996 & KS5 (age 18) 1st collected 2002

11. NPD Data https://www.gov.uk/government/collections/national-pupil-database

12. Example NPD publication by DfE

13. Linkage: Aims & Objectives • Previous patient level linkage to HES • Feasibility of pupil level linkage to NPD • Describe factors influencing linkage rates to the NPD • Compare the process of linking to a non-health data source (NPD) with linking to a health data source (HES)

14. Linkage: Methodology • Performed by Department for Education (DfE) • Patient identifiers securely provided • Name, date of birth, postcode, unique CRANE identifier • Consented cohort born with cleft lip and/or palate in England between 2000 and 2008 • DfE returned pupil-level data file • Early Years Foundation Stage Profile (age 5), Key Stage 1 (age 7) & Key Stage 2 (age 11) results for the CRANE cases successfully matched

15. Linkage Rates EYFSP & KS1: 2,170 KS1 & KS2: 1,019 EYFSP & KS1 & KS2: 436 • NPD linkage rate did not vary across year of birth or by type of cleft

16. Linkage Rates by Centres • Considerable variation in NPD linkage rates between the 13 CRANE Administrative centres (39% - 87%) in England • Highest linkage rates for Newcastle data Newcastle

17. Factors influencing linkage • NPD linkage rates appeared to be correlated with the quality of postcode capture by CRANE • Therefore – next steps: • Querying linkage process – potentially omitting postcodes • Seeking access to the Health and Social Care Information Centre (HSCIC) Demographics Batch Service (DBS)

18. NPD versus HES linkage • Identifiers used for linkage: • NHS number is fixed whereas names and postcodes can change over time • 5-year time lag between registration on CRANE and first appearance in NPD whereas can track in HES from birth • Technical challenge of matching on names e.g. spelling mistakes – fuzzy matching technique (finding approximate matches on part names) • To date CRANE has focussed on NHS number collection – data validation exercises to improve completeness

19. Future Aims & Objectives • Explore the impact of facial clefting on long-term educational outcomes - according to: • Cleft type, the presence of additional anomalies, age at diagnosis and timing of surgical cleft repair • Examine the correlation between treatment outcomes recorded in CRANE, such as speech quality, and the educational outcomes • Draw comparisons between the educational outcomes for the cleft cohort and the published national statistics for all children Other countries have published data describing academic achievement in children born with cleft but this has not been reported in the UK

20. Possible research questions for analysis of NPD data • Timing of CP repair and Educational Outcome (EO) • Birth weight and/or gestational age and EO • Height and/or weight at 5 and EO • Number of operations/total LOS and EO • Speech outcome at 5 correlates to EO • Amount of SLT therapy influence EO • Deprivation and EO • Syndromic/additional anomalies affect EO • Does SMCP affect EO independent of other anomalies or extent of CP affect EO • Gender differences with EO • Hearing and unilateral versus bilateral hearing loss and affect on EO • Grommet surgery indicative of lower EO

21. Challenges • Small number of cleft patients / large number of patient subgroups of interest • Large number of educational outcomes / ways of reporting these outcomes • Changes to collection and measurement of educational outcomes over time e.g. EYFSP – changes in 2000/01 • Lack of agreement as to meaning of given attainment level / correlation between outcomes at different stages e.g. does EYFSP predict attainment at KS1? • School differences need to be accounted for – as many of ways to measure school progress

22. Summary • Linkage of anomaly registers to the National Pupil Database is feasible • It will allow the study of long term educational outcomes • Our experience emphasises importance of anomaly register maintaining an up-to-date record of the patient’s postcode to facilitate linkage to non-health databases

23. Thank you CRANE Team, Clinical Effectiveness Unit Lynn Copley, Data manager Scott Deacon, Clinical project lead Professor Jan van der Meulen, Clinical epidemiologist Funding by: National specialised Commissioning Group for England Wales Specialised Health Services Committee