Commentary

The National Pregnancy in Diabetes Audit: measuring the

quality of diabetes pregnancy care

H. R. Murphy1, R. Bell2, R. I. G. Holt3, M. Maresh4, D. Todd5, J. Hawdon6, B. Young7,N. Holman8, R. Hillson9 and N. Lewis-Barned10 on behalf of the National Pregnancy inDiabetes Audit Steering Group

1Institute of Metabolic Science, University of Cambridge, Cambridge, UK, 2Institute of Health and Society, Newcastle University, Newcastle, UK, 3Diabetes and

Endocrinology, Human Development and Health Academic Unit, Faculty of Medicine, University of Southampton, Southampton, UK, 4St Mary’s Hospital, Central

Manchester University Hospitals NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UK, 5University Hospitals Leicester, Leicester,

UK, 6Barts Health NHS Trust, London, UK, 7Salford Royal NHS Foundation Trust, Manchester, UK, 8Health Intelligence, National Diabetes Information Service,

York, UK, 9Department of Health, London, UK and 10Northumbria Healthcare NHS Foundation Trust, North Shields, UK

Diabet. Med. 30, 1014–1016 (2013)

It is more than 10 years since the Confidential Enquiry into

Maternal and Child Health (CEMACH) showed that in the

UK women with diabetes had a three- to fivefold increased

risk of major congenital anomaly, preterm delivery, stillbirth

and neonatal death compared with the background mater-

nity population [1]. This informed the 2008 National

Institute for Health and Clinical Excellence (NICE) clinical

guideline, with its recommendations for improvements in

diabetes pregnancy care and more stringent glycaemic targets

before pregnancy [2]. Studies from the UK showing a 30–

50% decreased risk for congenital anomaly and perinatal

mortality per 11 mmol/mol (1%) reduction in periconcep-

tion HbA1c [3,4] suggest that the excess morbidity and

mortality among infants of mothers with diabetes can be

reduced.

The 1990’s UK paediatric cardiac surgery scandal, where

mortality rates for infants under the age of 12 months in

Bristol were twice that of other centres, highlighted the role

of clinical audit [5]. A report in the British Medical Journal

described health professionals’ transition from general scep-

ticism (‘we’re unmeasurable’, a ‘can’t do, won’t do’ mental-

ity) to making audit a key component of best practice (‘how

are we going to measure ourselves, what do we need to

improve?’) [6]. The Bristol inquiry led to agreed national

standards, unprecedented data transparency and concluded

that ‘patients and the public must be able to obtain

information as to the relative performance of the Trust and

the services and consultant units within the Trust’. The

resultant cardiac register received national funding to

develop a robust information technology (IT) infrastructure

(accounting for approximately 1% of cardiac surgery costs),

but saves an estimated £5 m per year, with a 50% reduction

in cardiac surgery mortality since 2006.

How are we doing a decade on from the deeply concerning

CEMACH data? Despite the agreed national standards for

diabetes pregnancy care, there has been no nationwide

approach to measuring maternal and fetal outcomes. Specific

challenges include the dispersal of pre-conception, antenatal

and neonatal care, the relatively small numbers of pregnan-

cies (median 25 deliveries per Trust per year) and even

smaller number with serious adverse pregnancy outcomes

(congenital anomaly and/or perinatal death). Yet, regional

audits from the North-East, North-West and East Anglia

show that measurement is possible. They suggest that

collaborative approaches to measuring, publishing and

acting on pregnancy outcome data lead to improvements in

care provision and clinical outcomes [7–9]. However,

regional audits do not involve all maternity units in every

region and do not collect data in a standardized way to

enable consistent comparison [4].

The lack of an ongoing national diabetes pregnancy audit

was highlighted as one of the most important obstacles to

improving diabetes pregnancy outcomes by Dr Rowan

Hillson MBE (then National Clinical Director for Diabetes)

in December 2008 [10]. This led to widespread patient and

professional support for a National Pregnancy in Diabetes

(NPID) audit to drive service improvement. Its function

would be to measure the key clinical diabetes pregnancy

issues highlighted in Table 1.

Piloting confirmed that a data set of 46 items provided these

measures. Testing initially took place using anonymized

retrospective data from 1381 pregnancies from 30 maternity

units, already participating in the North, North-West and

East Anglia regional audits [10]. The pilot illustrated the

challenges of implementing best practice: fewer than one in

five pregnant women took 5 mg folic or achieved HbA1c

< 53 mmol/mol (7%) before conception [10].

To test the feasibility of data collection among maternity

units with no previous experience of local and/or regionalCorrespondence to: Helen R. Murphy. E-mail: hm386@medschl.cam.ac.uk

1014ª 2013 The Authors.

Diabetic Medicine ª 2013 Diabetes UK

DIABETICMedicine

DOI: 10.1111/dme.12277

audit, a second proof of concept study was performed.

Prospective data were recorded in 527 pregnancies from 13

maternity units over 1 year. Initial enthusiasm from health

professionals was dampened by logistical challenges, poor IT

infrastructure and limited resources. However, a good deal

was learned about the barriers to data collection in routine

care. Accordingly, reducing the burden and complexity of

data collection has been paramount in designing the version

now launched within the National Diabetes Audit portfolio

(commissioned by the Health Quality Improvement Pro-

gramme; delivered by a partnership of the Health and Social

Care Information Centre, Diabetes UK and the National

Diabetes Information Service). Recognizing that many of the

data are already collected in other systems (the core National

Diabetes Audit, Hospital Episodes Statistics data, National

Maternity Data Set), the redesigned NPID audit uses linkage

with existing data sets to minimize local recording (only 20

items). However, using such linkages means identifiable

information has to be transmitted and hence can only be

performed with the woman’s informed consent. The NPID

Audit Steering Group is also working closely with the

National Diabetes Pregnancy Network Group to promote

engagement, sharing best practice and setting local and/or

regional priorities for improvement.

Chief executives, medical directors and clinical audit

departments of all National Health Service (NHS) Trusts

have been informed that the NPID audit was launched on 10

March 2013. There is an expectation from the Department

of Health and regulatory bodies that all Trusts providing

antenatal care to women with diabetes will participate. The

Department of Health’s Information strategy commits to

publishing NPID outcomes and ensuring that diabetes

pregnancy outcome data will be accessible to patients and

the public. This means that for the first time it will be

possible for individual NHS Trusts in England and Wales to

participate routinely in nationwide data collection that will

provide key performance data benchmarked to national

standards and comparator peer units. This will allow us to

learn from each other how we can improve outcomes for

women with diabetes and their infants.

Although it has taken over 10 years to put in place, we now

havenationallyagreedNICEstandardsandameans tomeasure

ourperformanceagainst these.Togetherwithemergingclinical

networks to share pregnancy outcome data amongst profes-

sionals, patients and the public, and with health service

planners, the scene is at last set for us to make a real difference

to pregnancy outcomes for women with diabetes. In the new

NHS, these networks need to be developed and nurtured if the

real potential of data collection is to be realized.

Funding sources

The Diabetes in Pregnancy Dataset Development Task and

Finish Group was funded by NHS Diabetes. HRM is funded

by a research fellowship supported by the National Institute

for Health Research. The views expressed in this publication

are those of the authors and not necessarily those of the

NHS, the National Institute for Health Research or the

Department of Health.

Competing interests

None declared.

Acknowledgments

The NPID Audit Steering Group includes Ruth Bell, Alison

Breese, Ellen Cameron, Laura Fargher, Robert Fraser, Jane

Hawdon, Naomi Holman, Richard Holt, Nick Lewis-Barned

(Chair), Michael Maresh, Sara Moore, Margery Morgan,

Helen Murphy, Gillian Peace, Rosemary Temple, Anita

Tibbs, Dianne Todd, Ala Uddin and Bob Young (Chair

National Diabetes Audit).

Particular thanks to Laura Fargher, National Diabetes

Audit Engagement Manager (Diabetes UK), Ala Uddin, NPID

Project Manager (NHS Information Centre), Dr Rowan

Hillson (National Clinical Director for Diabetes until March

2013) and Dr Rosemary Temple (Chair of the National

Diabetes Pregnancy Network Group) for their sustained

support and enthusiasm in establishing the NPID audit.

For more information about the audit, including informa-

tion on how to participate, go to www.ic.nhs.uk/npid or

email the NPID audit at NDIP@ic.nhs.uk.

References

1 Macintosh MC, Fleming KM, Bailey JA, Doyle P, Modder J, Acolet

D et al. Perinatal mortality and congenital anomalies in babies of

women with type 1 or type 2 diabetes in England, Wales, and

Northern Ireland: population based study. Br Med J (Clin Res Ed)

2006; 333: 177.

Table 1 Key clinical issues addressed by the National Pregnancy inDiabetes Audit (NPID)

Were women with diabetes adequately prepared for pregnancy?Taking folic acid at conception?Taking potentially teratogenic drugs at conception?Achieving optimal blood glucose control at conception?

Were appropriate steps taken during pregnancy to minimizeadverse outcomes?Were target HbA1c levels achieved?Was retinal screening carried out?Were other maternal risk factors identified?

Were adverse outcomes minimized during pregnancy?Deterioration of maternal retinopathyAcute maternal admissionTerminationMiscarriageStillbirthLive birthBirthweightCongenital anomalyPerinatal deathAdmission for neonatal care

ª 2013 The Authors.Diabetic Medicine ª 2013 Diabetes UK 1015

Commentary DIABETICMedicine

2 National Institute for Health and Clinical Excellence. Diabetes in

Pregnancy. Managment of Diabetes and its Complications in

Pregnancy from the Pre-Conception to the Postnatal Period. NICE

guideline 63. 2008. Available at www.nice.org.uk. Last accessed 25

January 2013.

3 Bell R, Glinianaia SV, Tennant PW, Bilous RW, Rankin J.

Peri-conception hyperglycaemia and nephropathy are associated

with risk of congenital anomaly in women with pre-existing

diabetes: a population-based cohort study. Diabetologia 2012;

55: 936–947.

4 Murphy HR, Roland JM, Skinner TC, Simmons D, Gurnell E,

Morrish NJ et al. Effectiveness of a regional prepregnancy care

program in women with Type 1 and Type 2 diabetes: benefits

beyond glycemic control. Diabetes Care 2010; 33: 2514–2520.

5 Fox R. Bristol scandal. Circulation 2001; 104: E9014–4.

6 Tavare A. Where are we with transparency over performance of

doctors and institutions? Br Med J (Clin Res Ed) 2012; 345: e4464.

7 Bell R, Bailey K, Cresswell T, Hawthorne G, Critchley J,

Lewis-Barned N. Trends in prevalence and outcomes of pregnancy

in women with pre-existing type I and type II diabetes. BJOG

2008; 115: 445–452.

8 Young RJ, Holmes EM, Casson IF, Maresh M. The North-West

Diabetic Pregnancy Audit: a practical system for multi-centre

diabetic pregnancy audit. Diabet Med 2008; 25: 496–500.

9 Roland JM, Murphy HR, Ball V, Northcote-Wright J, Temple RC.

The pregnancies of women with Type 2 diabetes: poor outcomes

but opportunities for improvement. Diabet Med 2005; 22: 1774–

1777.

10 Holman N, Lewis-Barned N, Bell R, Stephens H, Modder J,

Gardosi J et al. Development and evaluation of a standardized

registry for diabetes in pregnancy using data from the Northern,

North-West and East Anglia regional audits. Diabet Med 2011; 28:

797–804.

1016ª 2013 The Authors.

Diabetic Medicine ª 2013 Diabetes UK

DIABETICMedicine Commentary