Ensure minimum data is requested to achieve meaningful measurement of UK performance against national standards for newborn blood spot screening and to drive improvement
Align standards with the UK National Screening Committee generic themes, definitions and criteria
Align standards and data requests from the new Newborn Screening Key Performance Indicators

2. Background

The UK Newborn Screening Programme Centre Standards and Guidelines August 2008 are due for review.

The introduction of UK NSC Key Performance Indicators in 2011 would potentially result in duplication of requests for data to monitor coverage in newborn blood spot screening; understandably some NHS colleagues have expressed concern. To address this the UKNSPC would like to consult stakeholders ahead of the schedule for review of the other standards.

These revised standards have been developed jointly with the NHS Sickle Cell and Thalassaemia Screening Programme.

Revised draft standards will be presented to our Blood Spot Advisory Group, on 25 January 2011

Enquiries to:

Cathy Coppinger, Programme Manager
UK Newborn Screening Programme Centre
Level 5, Frontage Building
Great Ormond Street Hospital for Children NHS Trust
Great Ormond Street
London WC1N 3JH
Tel: 020 7829 7884
Fax: 020 7829 7881
Emma.Scott@gosh.nhs.uk

2. Summary of changes

The UK NSC generic definitions of acceptable and achievable, ratified by the UK NSC replace previous standard measures of core and developmental.

Standard	Changes
Standard 1 Completeness of offer	Review 2011 Measurement of performance against standard 1 was a proxy measure of offer evidenced by the numbers of untested babies outstanding recorded on a Child Health Information Systems (CHIS). Results from 2009/10 data suggests that offer is not reliably recorded; approximately 59% of PCTs/Child Health Records Departments (CHRDs) recorded the same figure for number of babies and number of babies offered screening, indicating that offer is assumed. The proxy measure of offer relies on implementation of the NBS results status code 01 specimen received in laboratory' and associated changes in processes. Feedback from stakeholders is that implementation of status code 01 processes is dependent on electronic messaging of results. In addition CHRDs cannot distinguish between a baby that has not been offered screening and one that has been offered but not tested. Responsibility for making the offer of screening lies with health care professionals. Offer of screening and taking the sample normally occur at the same time. We will consult stakeholders on transferring the responsibility to measure performance against the standard for offer to those organisations responsible for providing the service. For the reasons explained above, this standard does not form part of this consultation and data to measure offer will not be requested from CHRDs in 2011
Standards 2,3,4,5,6 and 7	These standards will be reviewed in 2011
Standard 8 Timely identification of babies for whom the child health record department has not received notification of specimen received in laboratory, screening test result or decline.	The purpose of this standard is to ensure babies who may have missed screening are identified within an effective timeframe and that screening is offered at the earliest opportunity. Previous measurement recorded percentage of babies with evidence of receipt of sample, result or decline recorded on the CHIS by 17 and 14 days. To avoid duplication of data requested following the introduction of the ‘effective timeframe for coverage' (see below standard 9 and KPI NBS1 p15) the Programme Centre will cease collecting this data with immediate effect. We would like to be reassured however, that CHRDs are performing a daily search to identify untested babies and acting on the findings. The revised standard therefore simply requires PCTs to report on the whether the CHRD(s) perform daily checks to identify untested babies between 14 days and one year.
Standard 9 Completeness of coverage	NSC generic definitions describes uptake as number of babies offered and accepted screening, divided by the number actually tested as a percentage. CHRDs cannot measure offer or accepted (see rationale for change standard 1) and therefore cannot measure uptake. NSC generic definitions define coverage as number of tested babies divided by the total eligible population expressed as a percentage. CHRDs can measure coverage. Test is defined as a screening encounter leading to the determination of a conclusive result. The effective timeframe for a test in KPI NBS1 is conclusive result recorded on the CHIS by 17 days. One of the main aims of screening is early identification and management of screen positive babies and this target aims to drive improvement in timeliness of referral, it also reflects what is achievable if the process runs to plan. The changes in standards 9 and 10 aim to align the standards more closely to the NSC generic terminology and KPI NBS1. KPI NBS 1 uses PKU as proxy for all conditions and is limited to those babies who were in the PCT responsible population both at birth and at the time of report. Although evidence that PKU is already used as a proxy measure by some CHRDs exists, there are also differences in numbers tested across the conditions recorded on the CHIS, which is of great concern. Incomplete recording of conclusive results can lead to unnecessary repeat requests and to try and avoid this we would like to continue to observe coverage across the conditions to identify the outliers and help PCTs resolve the problems. The screening status codes, implemented over the last two years should resolve variable practice in recording results enabling us to move towards using one condition as a proxy measure for all in the future. We know from laboratory data that it is extremely rare for parents to decline screening and if they do they usually decline all tests. To rationalise requests for data from CHRDs, tested on all conditions by 17 days will replace the proxy measure of offer by 17 and 14 days, previously requested in standard 8. If this proposal is accepted quarter 4 KPI NBS 1 coverage data can be collected as part of the annual data collection.
Standard 10 Completeness of coverage	This is similar to standard 9 above but this standard sets an effective timeframe for testing babies who are new GP registrations and for movers in. The acceptable time lapse between first contact with healthcare professional (for movers in) and testing of these babies will form part of this consultation.

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3.

The Standards
204KB - Posted by: Cathy Coppinger - 01/12/2010

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Response proformas
49KB - Posted by: Cathy Coppinger - 01/12/2010

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