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 MedinaOn behalf of Lynn Copley, Scott Deacon & Jan van der Meulen

CRANE team, Clinical Effectiveness Unit, Royal College of Surgeons of England

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

Background: CRANE Database

• CRANE Databaseo National register and treatment outcomes database

o Children born with a cleft lip and/or palate

o Approx 1 in 650 live births

• Data collected by 15 Administrative Centreso England, Wales & Northern Ireland

Background: Cleft lip and/or palate

• Common birth defect affecting a variety of functions o Speech and hearing

o Dental and psychosocial health

• Surgery to repair clefto Primary usually within the 1st year

o Further surgery as required – to improve appearance

& function

• Non-surgical interventionso Speech and language therapy and psychological support

• Multi-disciplinary care from birth to adulthood

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%

Background: Additional anomalies

• Syndromic/non-syndromic classification – made according to presence or absence of specified additional anomalieso Obtained through linking to diagnosis information

in Hospital Episode Statistics (HES)o 20% of cleft patients syndromic – varying by cleft

type

CRANE Outcomes

CRANE currently collects information on outcomes at 5 years of age including:

o Height & weighto Speech outcomes (not CL patients)o Dental health outcomeso Index of facial growth (complete UCLP cases only)

Educational results could be viewed as overarching outcome of the success of treatment

CRANE Outcomes Data

https://www.crane-database.org.uk/

Hospital Episode Statistics (HES)

• National database containing records on all admissions to NHS hospitals in England

• 1989/90 onwards o Unique patient identifier available from 1997/98

• Diagnostic informationo International Classification of Disease 10th revision (ICD-10)

o Cleft diagnosis (ICD-10 codes Q35, Q36, Q37)

• Procedure informationo Classification of Surgical Operations and Procedures 4th Revision (OPCS-4)

o Primary cleft repair (OPCS-4 codes F031, F291)

National Pupil Database (NPD)

• National database containing records on all pupils in England

• 1995/96 onwards and contains:o IDs: Pupil, school & LA identifiers

o Fixed pupil characteristics: Gender and age, English as an additional language, ethnicity.

o 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).

o 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).

o 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 o E.g. KS2 (age 11) data 1st collected in 1996 & KS5 (age 18) 1st collected 2002

NPD Data

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

Example NPD publication by DfE

Linkage: Aims & Objectives

• Previous patient level linkage to HES• Feasibility of pupil level linkage to NPDo Describe factors influencing linkage rates to the

NPD o Compare the process of linking to a non-health

data source (NPD) with linking to a health data source (HES)

Linkage: Methodology

• Performed by Department for Education (DfE)• Patient identifiers securely provided

o Name, date of birth, postcode, unique CRANE identifiero Consented cohort born with cleft lip and/or palate in

England between 2000 and 2008

• DfE returned pupil-level data fileo Early Years Foundation Stage Profile (age 5), Key Stage 1

(age 7) & Key Stage 2 (age 11) results for the CRANE cases successfully matched

Linkage Rates

7,152 eligible CRANE-registered patientsBorn in England between 2000 and 2008

4,004 (56%) CRANE recordslinked to NPD record

3,164 - EYFSP2,800 – KS11,040 - KS2

3,506 (88%) linked NPD cases linked to HES

Syndromic status determinedEYFSP & KS1: 2,170

KS1 & KS2: 1,019EYFSP & KS1 & KS2: 436

NPD linkage rate did not vary across year of birth

or by type of cleft

Linkage Rates by Centres

• Considerable variation in NPD linkage rates between the 13 CRANE Administrative centres (39% - 87%) in England

o Highest linkage rates for Newcastle data

Newcastle

Factors influencing linkage

• NPD linkage rates appeared to be correlated with the quality of postcode capture by CRANE

• Therefore – next steps:o Querying linkage process – potentially omitting postcodeso Seeking access to the Health and Social Care Information

Centre (HSCIC) Demographics Batch Service (DBS)

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

HES NPDNHS Number Surname & ForenameDoB DoBPostcode PostcodeSex -

Future Aims & Objectives

• Explore the impact of facial clefting on long-term educational outcomes - according to:o 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

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

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

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

Thank youCRANE Team, Clinical Effectiveness UnitLynn Copley, Data managerScott Deacon, Clinical project leadProfessor Jan van der Meulen, Clinical epidemiologist

Funding by:National specialised Commissioning Group for England Wales Specialised Health Services Committee