Regional Maternity Survey Office 27th Annual Report 2010 annual report 2010 electronic versio… · 27th Annual Report 2010 Delivering independent intelligence for health and wellbeing

Regional Maternity Survey Office27th Annual Report 2010

Delivering independent intelligencefor health and wellbeing

NORTH EAST PUBL IC HEALTH OBSERVATORY

2

RMSO Annual Report 2010

Aut

hors

IntroductionDr Stephen Sturgiss, Consultant ObstetricianDr Claire Bradford, RMSO Director

Obstetric commentaryDr David Evans, Medical Director, Northumbria Healthcare NHS TrustKath Mannion, LSA Midwifery Officer

Perinatal Mortality Survey (PMS)Dr Martin Ward Platt, Consultant Neonatologist & RMSO Clinical Director

Northern Congenital Abnormality Survey (NorCAS)Prof Judith Rankin, Professor in Maternal & Perinatal EpidemiologyMary Bythell, RMSO Coordinator

Northern Survey of Twin and Multiple Pregnancy (NorSTAMP)Dr Ruth Bell, Clinical Senior LecturerDanielle Crowder, Data ManagerDr Svetlana Glinianaia, Team ScientistDr Stephen Sturgiss, Consultant Obstetrician

Northern Diabetes in Pregnancy Survey (NorDIP)Dr Ruth Bell, Clinical Senior LecturerDr Rudy Bilous, Consultant PhysicianDanielle Crowder, Data Manager

North of England Collaborative Cerebral Palsy Survey (NECCPS)Dr Karen Horridge, Consultant Paediatrician (Neurodisability) & Chair NECCPSMary Bythell, RMSO CoordinatorDr Svetlana Glinianaia, Team ScientistProf Allan Colver, Consultant Paediatrician

Centre for Maternal and Child Enquiries (CMACE)Mary Bythell, RMSO Coordinator

EditorDr Claire Bradford, RMSO Director

Further copies are available fromRMSO 1-2 Claremont Terrace, Newcastle upon Tyne, NE2 4AEOr, www.rmso.org.uk

The Regional Maternity Survey Office would like to thank the all of the healthcareprofessionals that contribute to data reporting, members of the steering groups,women and parents that consent to participation in the surveys and parents forpermission to use the photographs of their children in this publication.

Authors

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Co

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ContentsIntroduction 4

Obstetric Commentary 10

Perinatal Mortality Survey (PMS) 14

Northern Congenital Abnormality Survey (NorCAS) 24

Northern Survey of Twin and Multiple Pregnancy (NorSTAMP) 30

Northern Diabetes in Pregnancy Survey (NorDIP) 36

North of England Collaborative Cerebral Palsy Survey (NECCPS) 42

Centre for Maternal and Child Enquiries (CMACE) 46

Publications 47

Glossary 49

Contact info 51

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• To provide clinical staff involved in thecare of women and children with highquality information about the outcomes ofpregnancy.

• To provide commissioners and managersinvolved in the provision of maternity andchild health services with high qualityoutcome data to support the improvementof service quality and clinical governancefor women and children in the North Eastand North Cumbria

• To inform those with an interest inmaternal and child health about the rangeand use of data that is held by the RMSOand how this can be used forepidemiological and health servicesresearch.

The RMSO

The RMSO is part of the North East PublicHealth Observatory (NEPHO). It has collatedinformation on maternity outcomes foralmost 30 years. Since 2003, the RMSO hasdelivered the functions of the ConfidentialEnquiry into Maternal and Child Health(CMACE) which brought togetherConfidential Enquiry into Stillbirths andDeaths in Infancy and the ConfidentialEnquiry into Maternal Deaths.

The RMSO has three major roles:

Surveillance – health and healthinequalities assessment and monitoring.This is essential in helping Primary CareTrusts and Local Authorities to fulfillstatutory monitoring requirements. Maternaland perinatal health are fundamentalmarkers of health inequality anddeterminants of health.

Governance and quality ofservices. NHS North Eastneeds to be able todemonstrate that maternityand child health services inthe region are providing highquality care - especiallywhen service models andconfigurations are changing.The North East has a relativelysmall population with a numberof small clinical units. It isimportant that service users, thepublic and others, including theCare Quality Commission,commissioners and local scrutinycommittees have access to highquality information aboutpregnancy outcomes.

Research and development.The RMSO and NEPHO have a keyrole in supporting academic training,professional development andresearch. Over 100 papers(www.nepho.org.uk/rmso/about/publications) have been publishedusing data from the surveys managedby the RMSO.

The RMSO also co-ordinates andcollates information on: Northern Surveyof Twin and Multiple Pregnancy(NorSTAMP, established 1998), NorthernSurvey of Diabetes in Pregnancy (NorDIP,established 1994), the North of EnglandCollaborative Cerebral Palsy survey -NECCPS, established 1993). The RMSOalso provides anonymised data to theEuropean Surveillance of CongenitalAnomalies (EUROCAT). The data analysisfor the Perinatal Mortality Survey (PMS) andNorSTAMP is dependent upon the releaseof the birth denominator data from theOffice for National Statistics (ONS).

IntroductionThis is the twenty-seventh annual report produced bythe RMSO. Data are presented for 2008 (the mostrecent data available) along with partial activityinformation for 2009. The objectives of this reportremain the same as those in previous years, and are:

RMSOis a core function of theoutcomemeasuring

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RMSO and the quality agenda

The NHS White paper “Equity and Excellence:Liberating the NHS” published in the summer of2010 builds on recent reform efforts. It focuses onputting patients and the public first, improvingquality and outcomes of care. Improvements inquality standards and healthcare outcomes aretwo unifying forces, capable of bringing togetherthe ambitions of NHS staff, the hopes of patientsand the expectations of the public. The qualityagenda must continue to be a guiding principle ofthe delivery of maternal and infant care. It is alsovery important that quality-focused healthcarereforms are not perceived by patients and thepublic as attempts to reduce costs. It should beacknowledged that improvements in quality ofcare are often associated with gains in efficiency.

A common theme to reforms aimed at improvingquality of care is the identification of meaningfuland measurable outcome and process indicators.This concept is very familiar to those involved withthe provision of maternity services. It is a corefunction of the RMSO, which has a long history ofcollating information on maternity outcomesbeginning in 1981 with establishment of theNorthern Regional Perinatal Mortality Survey(PMS). The RMSO is therefore well placed toprovide maternity and neonatal data andinterpretation to support the development of theproposed NHS Outcomes Framework.

The RMSO has already started to take a moredirect approach to improving quality of care withinmaternity services across the clinical networks inthe North East and North Cumbria. The groupssupervising the collation of pregnancy data fordiabetic women (NorDIP) and women with multiplepregnancies (NorSTAMP) have taken a lead role inthe creation of regionally-agreed standards ofcare, as well as key outcome and processindicators. This work will be followed by

benchmarking against these standards with localand national outcome date when available. Thisprocess is at a formative stage, but is alreadyleading to important conclusions noted in thisyear’s reports such as:

• The stillbirth rate for twins in the North East andNorth Cumbria has not changed significantlyover time remaining at around 20 per 1000births. This has prompted an ongoing detailedanalysis of trends in mortality outcomes bychorionicity in multiple gestations.

• More work needs to be done in relation to theearly referral of women with previous gestationaldiabetes; monitoring of fetal growth; andpostnatal assessment of blood glucose in bothmothers and infants.

The principle of improving care throughout thematernity network by widespread collaborativeaudit and benchmarking is also a core theme ofthe Clinical Improvement Team (CIT). This team ofclinical leaders and senior managers from all trustsin the area has been created to implement theNorth East vision for maternity and newbornservices.

The combined efforts of the CIT allied to thelongstanding collaborative working andestablished expertise within the RMSO provides aunique opportunity for all involved with theprovision of maternity care in the North East andNorth Cumbria to transform our services to thelong-term benefit of the local population.

To do so, however, will require the collection ofmore detailed information than the relatively broadoutcome measures currently held by the RMSO.Perinatal mortality rates and frequencies ofoperative interventions are important, but wide-ranging parameters such as these have limitationswhen attempting to assess services in more detail.For example, units with lower perinatal mortality

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rates might be providing better quality of care, butin reality the usual explanation may be that suchunits are caring for women with lower riskpregnancies.

It is also worth emphasising certain principles thatare very important to the success of this work. Theapproach must be inclusive at the outset, with the“buy in” of all involved in commissioning,organising and delivering care. The data must bemeaningful, and presented in way that is easy-to-understand. Most important of all, the evaluationof the outcome parameters must be carried out ina supportive and aspirational environment - ratherthan be perceived as punitive for those with lessthan optimal outcomes.

The NHS is currently in a period of transition as aresult of the changes proposed with thepublication of the recent White Paper and itsassociated documents. The abolition of StrategicHealth Authorities and Primary Care Trusts andtransfer of commissioning responsibilities to theNHS Commissioning Board and GPCommissioning Consortia presents a challenge tothe RMSO to ensure that clinicians, patients andthe public can continue to access valuablematernity and newborn outcome information.There has never been a more opportune time toensure that the work of the RMSO describedabove continues – and there has never been atime at which it is so important that quality of careis the prime motivating force for major healthcarereform. The RMSO is ideally placed to make amajor contribution to this work – and it is vitallyimportant that the functions and funding of theRMSO are embedded in the core working of theNHS in our area.

The quality agenda mustcontinue to be a guidingprinciple of the delivery ofmaternal and infant care

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Boundaries for data collectionand reporting

There have been many changes to NHSconfigurations since the first RMSO annual report26 years ago. This report presents data as per thecurrent configuration of Strategic HealthAuthorities, Primary Care Trusts and HospitalTrusts. Population data are reported by LocalAuthority, at unitary and county level in the NorthEast and by district in North Cumbria. Totals arepresented for NHS North East as well as the NorthEast and North Cumbria. The inclusion of NorthCumbria allows for both continuity with the previousreporting of the “Northern Region” and also isconsistent with historical and current maternal,neonatal and paediatric clinical networks (Figure 1.1).

Governance

The work of the RMSO is overseen by the RMSOsteering group(www.nepho.org.uk/rmso/about/steeringgroups)which reports to the NEPHO Policy Board. Each ofthe RMSO surveys is overseen by a steering groupand these in turn report to the RMSO steeringgroup.

Data is processed at the RMSO within theparameters of the NEPHO Security andConfidentiality Policy(www.nepho.org.uk/rmso/data). As a member ofthe British Isles Network of Congenital AnomalyRegisters (BINOCAR), NorCAS has Section 251approval (NHS 2006 Act) to process data. CMACEalso has Section 60 approval for its datacollection. Patient consent is currently obtained fordata collection for NorDIP, NorSTAMP andNECCPS.

Senior clinical staff have access on request (andsubject to data security compliance) to data fromtheir own units for audit and clinical governancepurposes. Directors of Public Health have accessto data on their Primary Care Trust or StrategicHealth Authority populations on request to theDirector of the RMSO to address issues ofconcern for their local population. Applications toaccess data (www.nepho.org.uk/rmso/data) forresearch purposes are made using RMSOdocumentation and must comply with RMSOguidance. Requests for access to named patientdata will require Local or Multi-Centre ResearchEthics Committee approval for the project. Adviceon the process is available from staff at the RMSO.

Figure 1.1 Local Authoritiescovered by the RMSO

Northumberland

Eden

Carlisle

Allerdale

Copeland

County Durham

Newcastle

Redcar & Cleveland

MiddlesbroughDarlington

Stockton-on-Tees

Sunderland

Hartlepool

North Tyneside

South Tyneside

Gateshead


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Costs of access to the data should be included inall research proposals and RMSO staff can adviseon the appropriate tariff. RMSO data has beenused to support many different research topics. A full list of publications using RMSO data isavailable on the website(www.nepho.org.uk/rmso/about/publications).

Funding

The RMSO has three main sources of funding:

• Funding from the 12 NHS North East PrimaryCare Trusts

• Department of Health (HQIP) clinical auditfunding to support NorCAS (to March 2011)

• CMACE for the regional delivery of CEMACHfunctions

The future funding of the RMSO is uncertain. Theunique and invaluable unbroken data collection ofthe RMSO for the last 28 years has beendependant on its ability to continue working withclinical networks in the face of numerous NHSreorganisations. In order for this to continue itrequires secure funding streams. DH funding forcongenital anomaly registers is currently underreview and the RMSO will continue to contributeto this process wherever possible to try to ensurethat there is continued funding for the surveys andregisters.

Outputs

Data in the surveys and registers are analysed andused for:

• Local and regional audit to support clinicalgovernance in obstetrics and midwiferyneonatology, pathology, paediatrics anddiabetes care

• Surveillance programmes at local, national andinternational levels

• Monitoring and evaluation of antenatal screeningprogrammes

• Continued professional development ofprofessionals at annual meetings

• Networking with parents and carers

• Research into the causes of deaths, anomalies,disability and service quality

As part of the redevelopment of the NEPHOwebsite, the RMSO has a new websitewww.rmso.org.uk. This is an important resourceand includes information and data on manyaspects of RMSO work and will hopefully becomethe first port of call for those within the North Eastand North Cumbria who require further informationabout outcomes in maternal and perinatal health.

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2.7%Total

deliveries up by

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Most units have seen very small variation indelivery rates with only Newcastle RVI at a 6%increase showing a substantial increase. Someof this increase may be accounted for by theplanned referral system from surrounding unitsbut also shows a continued growth in thepopulation.

The two new freestanding midwifery led units(MLUs) at Hartlepool and North Tynesideretained 23% & 47% respectively of thedeliveries which occurred with the ConsultantLed Units in 2008, but this figure rose to 26% inHartlepool, and fell to 38% in North Tyneside, in2009. The trend in the longer established MLUsat Bishop Auckland and Hexham is howeverthat of a gradual decline in the number ofdeliveries. The small units serving isolatedcommunities in Berwick, Alnwick & Penrithshow little change on their already very smallnumbers. The future of freestanding units willneed to be reviewed with an inevitable drive toco-location with Consultant Led Units ongrounds of safety, governance and cost.

Commissioners plan a public consultation onMaternity Services North of Tyne in 2010following on from last year’s consultation andapproved changes to the provision ofEmergency Care.

There is general agreement by all parties thatthe NHS is entering a period of significantfinancial constraint. It seems likely that allaspects of health spending and current modelsof delivery will be examined. Service providerswill need to fully justify the status quo or be ableto propose changes to deliver improvedservices at lower cost.

Commissioners of healthcare have begun toquestion intervention rates in some units acrossthe region as part of the current Quality,Innovation, Productivity and Preventionprocess. Variations in practice have been arecurring theme of this commentary for severalyears. Reduction of intervention rates towardsnational norms seems likely to be a requirementand failure to bring about timely change maycarry significant financial penalties forFoundation Trusts.

In the coming year the RMSO will be working tosupport the new GP Commissioning Consortia.

ObstetricCommentary The delivery statistics for 2008 provided by the individual units areshown in Table 2.1.

The total number of deliveries again shows a small increase (2.7%)with the North East and North Cumbria lagging far behind increasesreported elsewhere in the UK of up to 15%. These have beenattributed to factors such as localised immigration in other parts ofthe country and early signs of economic recovery elsewhere which donot, as yet, appear to have influenced the North East.

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Tab

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Per

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MS

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14

30of data collection

years

Causes of stillbirth and infant death

This year the clinico-pathological causes of deathare presented in a different way to previous years.In order to improve presentation results arepresented using tables and pie charts. Term andpreterm babies are analysed separately, andstillbirths, neonatal deaths and post-neonatalinfant deaths have been separated out for clarity.These representations of the data for the NorthEast and North Cumbria provide a moreinformative analysis of clinical experience, and welook forward to your feedback about them(Figures 3.1 to 3.5).

Figure 3.1 shows the causes of all deaths up to ayear postpartum (infant death) for those babiesborn term and preterm. While there are nearlythree times as many deaths among preterm thanterm babies, the proportion of total births at termis 92.5%, and preterm 7.5%. For term babies,around a third of the deaths are frommalformation, but this accounts for only a fifth ofthe preterm deaths; similarly, intrapartum anoxia isproportionately more significant among termbabies. Unsurprisingly, problems of prematurityaccount for over 40% of the deaths in pretermbabies.

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15


Perinatal MortalitySurvey (PMS)2010 is the 30th year of data collection by the Perinatal MortalitySurvey. We are in the process of reviewing how we can use thisunique data source to present meaningful and useful information ofperinatal and infant outcomes in the North East and North Cumbria.

Malformation

0 10 20 30 40 50

SUDI

Intrapartum anoxia/trauma

Other specific cause

Infection

Accidents/non-IP trauma

Problems of prematurity

Unclassifiable

Antepartum hypoxia

PrematureTerm

Figure 3.1. Cause of infant mortality in term and premature babies (%)in the North East and North Cumbria 2006-2008

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Unexplained AP death

0 10 20 30 40 50 60 70 80

Malformation

Infection

Intrapartum anoxia/trauma

Other specific cause

Unexplained other

Unclassifiable

PrematureTerm

Figure 3.2. Cause of stillbirths (%) in the North Eastand North Cumbria 2006-2008

While a quarter of all the deaths in term babies aresudden, unexpected and unexplained, and thesedeaths are both absolutely and relatively lesscommon as causes of death among pretermbabies, 30% of these deaths arise from the 7.5%of the babies that are born preterm. Five of theinfant deaths in term babies were the result ofaccidents/trauma; it is likely that some of thesedeaths may have been preventable, whichemphasises the importance of child death reviewprocesses in determining the contributory factors.

Stillbirth is dominated by ‘unexplained’ deaths(Figure 3.2). Growth restriction is an importantassociated factor for many of these otherwiseunexplained deaths. Some stillborn babies haveevidence of anoxia at autopsy without any other

clue as what has caused the anoxia, althoughproblems related to cord occlusion areincreasingly being recognised. Infection andmalformation are the other two major causes ofstillbirth. Post-mortem examinations for stillbirthsare vital as these provide valuable diagnosticinformation and therefore will reduce the numbersof “unexplained” stillbirths. For those stillbirthswhere permission for post-mortem is not received,copies of placental histology reports would be avaluable addition to the data collected and codedin the RMSO.

Per

inat

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urve

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MS

)

17


For all neonatal deaths (up to 28 days postpartum), prematurity exceeds congenitalmalformation as the dominant cause, withasphyxia and infection sharing third place (Figure3.3). For deaths after 28 days (post neonatalinfant deaths), the major cause is suddenunexpected and unexplained infant deaths,followed by malformation. Previously some ofthese malformation deaths may have occurredearlier, but can now be delayed as a result ofmodern interventions, not all of which aresuccessful. However, this graph also shows howa significant proportion of babies dying as a directresult of prematurity do so after the neonatalperiod (that is, older than 28 days), and that post-neonatal infections account for just over a sixth ofthe deaths.

Perinatal deaths are shown by area of residenceand unit of delivery, adjusted according to birthweight and presence or absence of malformationin Tables 3.1-3.4. It should be noted that therehas been an increase in perinatal deaths of non-malformed infants > 999g in the North Tynesidelocal authority area. Ten of these deaths werebooked and delivered at the RVI so they are alsoreflected in the RVI’s relatively high unit perinatalmortality rate for 2008. On closer analysis wefound no evidence that any of these deaths wererelated to problems in the care pathway. Details ofthis analysis are held in the RMSO to maintainpatient confidentiality.

Malformation

0 10 20 30 40 50

SUDI

Infection

Problems of prematurity

Other specific cause(8.2%, 26)

Accidents/non-IP trauma

IP anoxia/trauma

Unclassifiable (0.3%, 1)

Unexplained AP death*

Neonatal deathsLate deaths

Figure 3.3. Cause of neonatal and late deaths (%) in the North Eastand North Cumbria 2006-2008

Per

inat

al M

ort

alit

y S

urve

y (P

MS

)

18


Northern Neonatal Network

The Northern Neonatal Network (NNN) is amanaged clinical network covering the North Eastand North Cumbria. The RMSO, which coversexactly the same population, undertakes the auditof maternity and neonatal outcomes for thisgeographical area. The RMSO undertakes the datamanagement and audit functions for the network.The PMS steering group has agreed to becomethe Neonatal Network oversight group within theRMSO.

Counting perinatal and infant deaths

Perinatal deaths are rare and post-perinatal infantdeaths even more so. Therefore to make faircomparisons between areas or institutions or tolook meaningfully at trends over time, it isnecessary to aggregate data that is useful andmeaningful. Even within our region, certaincategories of death contain so few subjects thatgreater aggregation has to be made. It is for thisreason that the data is presented in two ways: forthe year in question, and as three year rollingaverages. The rolling averages are calculated asthe data for the year in question plus the twopreceding years. The principal change that isproposed for the future is to standardise allreporting to be that of three year rolling averages,due to concern that analysis of year-on-yearvariation is not useful. Annual data tables willcontinue to be available on the website whilst thereport will concentrate on descriptive analyses andexplication of the rolling average figures.

There will also be greater use of confidenceintervals around point estimates in tables andgraphs. Use of confidence intervals will enablegreater understanding of the significance ofvariations in outcomes between places and overtime.

We will continue to count and report all fetal lossand neonatal death from 20 weeks of gestation upto one year postnatal. However, we are aware thatterminations of pregnancy, often for fetal anomaly,can lead to distortions of the apparent rates ofboth stillbirth and neonatal death. Furthermore the‘success’ of neonatal outcomes should not bejudged solely on the basis of all maternities,especially if many of these had at best a very smallchance of long term survival. A betterdenominator for assessing the success ofneonatal management is the number of babieswith a reasonable expectation of survival. In orderto calculate this denominator the Centre forMaternal and Child Enquiries (CMACE) hasdeveloped an algorithm which adjusts thedenominator by excluding babies with lethal

congenital malformations, babies weighing lessthan 500g at birth, babies born earlier than 22weeks of gestation, and terminations ofpregnancy. In future our reports on neonataloutcomes will be adjusted in this way. Unadjusteddata will also be available on the RMSO website.Our opinion is that survival to a year is a moreuseful outcome measure for neonatal care thanmerely surviving the first postnatal month: that is,infant mortality is a more informative qualityindicator than neonatal mortality.

It is timely to recall that crude descriptions ofstillbirths, neonatal death rates and child deathsbetween maternity units or Trusts take no accountof the fact that the highest risk women, babies andchildren are appropriately and systematicallytransferred for specialist care to those unitsproviding neonatal and paediatric intensive care.Therefore we would expect that crude death rateswould be much lower than the regional average inTrusts that refer and much higher in Trusts thatreceive these high risk cases.

How then should ‘like for like’ comparisons bemade between hospitals? The only remotely fairway of correcting for antenatal transfers is bylooking at the outcomes of women who bookedand delivered their babies in the same hospital,regardless of where the baby died. CMACE goesone step further: to allow for postnatal transfers,they focus only on those cases where the womanbooked and delivered, and her baby died, in thesame hospital. The problem with this approach isimpact of the reduction in the number of deathssubsequently eligible for analysis, especially in thesmaller maternity units.

The RMSO approach is that in a highly integratedregion such as the North East and North Cumbria,with centrally organised neonatal and paediatricintensive care transfer, four tertiary neonatalcentres and just two paediatric intensive careunits, it is sufficient to control for case mix bysimply focusing on the outcomes of women who‘booked and delivered’ in the same unit. There willstill be a tendency for high risk women to be morelikely to choose to book at a hospital providingneonatal intensive care, but it’s not possible toadjust for this.

Per

inat

al M

ort

alit

y S

urve

y (P

MS

)

19


In summary, the following table shows how RMSOmortality data, and hence reporting, currently differfrom that of CMACE:

We believe that our plans for a new approach toreporting will be helpful to you. But are we right?What other approaches to the analysis andpresentation of mortality and other data would bevalued? If you have ideas that would improve theway we present our analyses to make them moreuseful or relevant to you, we would like to hearfrom you.

RMSO CMACE

Fetal loss from 20 weeks, plus stillbirths Stillbirths (i.e. from 24 weeks only)

Deaths up to a year by year of birth Deaths up to 28 days by year of birth

All older child deaths by year of death N/A

Adjusts case mix by ‘booked and delivered’ Adjusts case mix by ‘booked, delivered & died’

Adjusts mortality rates by excluding

Per

inat

al M

ort

alit

y S

urve

y (P

MS

)

20


Tab

le 3

.1: N

ort

h E

ast,

No

rth

Cum

bri

a an

d “

No

rthe

rn R

egio

n”: P

erin

atal

Dea

ths

and

Per

inat

al M

ort

alit

y R

ates

200

6, 2

007

& 2

008

and

3 y

ear

rolli

ngav

erag

e P

erin

atal

Mo

rtal

ity

Rat

es 2

006-

2008

and

200

6–20

08, b

y Lo

cal A

utho

rity

Loca

l Aut

hori

tyR

egis

tere

d T

ota

l Bir

ths

(ON

S)

Num

ber

of

Per

inat

al D

eath

s (P

MS

)P

ER

INA

TAL

MO

RTA

LIT

Y R

AT

E (p

er 1

000

Tota

l Bir

ths)

2006

2007

2008

2006

2007

2008

2006

2007

2008

2005

/07

2006

/08

Har

tlep

ool

1195

1179

1172

1011

98.

49.

37.

78.

38.

5

Sto

ckto

n on

Tee

s23

9922

9124

5927

2221

11.3

9.6

8.5

8.9

9.8

Mid

dle

sbro

ugh

1886

1991

1901

1312

146.

96

7.4

7.7

6.7

Red

car

& C

leve

land

1538

1532

1591

157

109.

84.

66.

37.

56.

9

Dar

lingt

on12

9012

6113

4415

710

11.6

5.6

7.4

8.2

8.2

Cou

nty

Dur

ham

5431

5657

5721

4937

479

6.5

8.2

8.2

7.9

Sun

der

land

3256

3274

3312

2932

278.

99.

88.

29.

48.

9

Sou

th T

ynes

ide

1573

1703

1677

168

1010

.24.

76

6.7

6.9

Gat

eshe

ad22

5822

5623

6316

2418

7.1

10.6

7.6

9.3

8.4

Nor

th T

ynes

ide

2263

2279

2425

913

224

5.7

9.1

5.9

6.3

New

cast

le32

3932

4933

0822

2229

6.8

6.8

8.8

7.3

7.5

Nor

thum

ber

land

3012

3055

3111

2025

246.

68.

27.

76.

97.

5

No

rth

Eas

t29

340

2972

730

384

241

220

241

8.2

7.4

7.9

7.9

7.8

Alle

rdal

e89

510

0598

67

65

7.8

65.

17.

96.

2

Car

lisle

1173

1131

1229

610

65.

18.

84.

98.

26.

2

Cop

elan

d77

573

674

71

43

1.3

5.4

44.

03.

5

Ed

en47

745

547

22

10

4.2

2.2

05.

02.

1

No

rth

Cum

bri

a33

2033

2734

3416

2114

4.8

6.3

4.1

6.7

5.1

“NO

RT

HE

RN

RE

GIO

N”

3266

033

054

3381

825

724

125

57.

97.

37.

57.

87.

6

Per

inat

al M

ort

alit

y S

urve

y (P

MS

)

21

RMSO Annual Report 2010Ta

ble

3.2

: No

rth

Eas

t, N

ort

h C

umb

ria

and

“N

ort

hern

Reg

ion”

200

7 &

200

8 : P

erin

atal

Mo

rtal

ity

by

Loca

l Aut

hori

ty e

xclu

din

g in

fan

ts w

eig

hing

less

than

500

g o

r le

ss t

han

1kg

. Per

inat

al m

ort

alit

y ra

tes

for

infa

nts

wei

ghi

ng 1

kg

or

mo

re, b

oth

wit

h an

d w

itho

ut m

ajo

r m

alfo

rmat

ion

for

2007

& 2

008

Loca

l Aut

hori

tyD

eath

s kn

ow

n to

RM

SO

PE

RIN

ATA

L M

OR

TALI

TY

RA

TE

PE

RIN

ATA

L M

OR

TALI

TY

RA

TE

All

per

inat

alD

eath

s>

499g

onl

y>

999g

Onl

yN

orm

ally

Fo

rmed

>99

9gA

ll >

999

gN

orm

ally

-fo

rmed

>

999

g

0708

0708

0708

0708

2007

2008

2006

-08

2007

2008

2006

-08

Har

tlep

ool

119

117

83

73

6.8

2.6

5.4

5.9

2.6

5.1

Sto

ckto

n on

Tee

s22

2116

1810

138

104.

45.

35.

33.

54.

14.

5

Mid

dle

sbro

ugh

1214

1113

98

65

4.5

4.2

4.3

32.

63.

1

Red

car

& C

leve

land

710

59

37

36

24.

43.

42

3.8

3.0

Dar

lingt

on7

106

104

82

83.

26

4.9

1.6

63.

9

Cou

nty

Dur

ham

3747

3343

2428

2223

4.2

4.9

4.7

3.9

44.

2

Sun

der

land

3227

2826

1920

1815

5.8

65.

45.

54.

54.

7

Sou

th T

ynes

ide

810

79

79

59

4.1

5.4

5.7

2.9

5.4

4.6

Gat

eshe

ad24

1821

1715

1112

86.

64.

74.

75.

33.

43.

6

Nor

th T

ynes

ide

1322

1021

716

515

3.1

6.6

4.0

2.2

6.2

3.6

New

cast

le22

2922

2715

2013

154.

66

5.1

44.

54.

3

Nor

thum

ber

land

2524

2019

1416

1114

4.6

5.1

4.9

3.6

4.5

4.2

No

rth

Eas

t22

024

119

021

913

515

911

213

14.

55.

24.

83.

84.

34.

1

Alle

rdal

e6

56

55

24

15

24.

24

13.

5

Car

lisle

106

96

63

32

5.3

2.4

2.8

2.7

1.6

1.7

Cop

elan

d4

34

24

13

15.

41.

32.

24.

11.

31.

8

Ed

en1

01

01

01

02.

20

1.4

2.2

01.

4

No

rth

Cum

bri

a21

1420

1316

611

44.

81.

72.

93.

31.

22.

2

“NO

RT

HE

RN

RE

GIO

N”

241

255

210

232

151

165

123

135

4.6

4.9

4.6

3.7

43.

9

Per

inat

al M

ort

alit

y S

urve

y (P

MS

)

22


Tab

le 3

.3: N

ort

hern

Reg

ion“

No

rthe

rn R

egio

n” 2

007

& 2

008:

Tim

ing

of

dea

th a

nd p

erin

atal

mo

rtal

ity

rate

(PN

MR

) by

unit

. Reg

iste

red

bir

th d

ata

are

pro

vid

ed b

y in

div

idua

l uni

ts.

The

tab

le g

ives

the

tota

l num

ber

s of

stil

lbirt

hs a

nd n

eona

tal d

eath

s of

bab

ies

del

iver

edat

the

nam

ed u

nit r

egar

dle

ss o

f the

pla

ce o

f boo

king

. N

on a

dju

sted

per

inat

al m

orta

lity

rate

sar

e ca

lcul

ated

usi

ng th

ese

figur

es. T

he fi

gure

s in

bra

cket

s ar

e th

ose

bab

ies

eith

er o

rigin

ally

boo

ked

els

ewhe

re b

ut d

eliv

ered

in th

e un

it (i.

e. tr

ansf

erre

d e

ither

ant

enat

ally

or i

ntra

par

tum

)or

unb

ooke

d. T

he a

dju

sted

per

inat

al m

orta

lity

rate

is t

he r

ate

for

thos

e b

abie

s b

oo

ked

and

del

iver

edat

a g

iven

uni

t. D

irect

com

par

ison

s ca

nnot

be

mad

e b

etw

een

units

bec

ause

of t

he s

mal

l num

ber

of

dea

ths

in a

ny g

iven

uni

t. T

otal

s ar

e no

t id

entic

al t

o th

ose

in o

ther

tab

les

as t

hey

incl

ude

som

e “n

on r

esid

ent”

birt

hs a

nd s

ome

resi

den

ts g

ive

birt

h in

uni

tsou

tsid

e th

e re

gion

.

Mat

erni

ty U

nits

Reg

iste

red

Bir

ths

Sti

llbir

ths

EN

ND

LND

No

n-A

dju

sted

PN

MR

Ad

just

ed P

NM

RA

dju

sted

PN

MR

2007

2008

2007

2008

2007

2008

2007

2008

2007

2008

2007

2008

2006

-200

8

Har

tlep

ool

1684

380

80

20

00

5.9

05.

90

7.1

Nor

th T

ees

1987

3274

17(4

)20

(3)

9(4)

7(2)

1(1)

4(2)

13.1

8.2

9.1

6.7

8.2

Jam

es C

ook

4052

4121

16(2

)18

(1)

8(3)

12(1

)2

45.

97.

34.

76.

86.

3

Dar

lingt

on23

0624

778(

2)14

(1)

6(1)

33

16.

16.

94.

86.

56.

1

B. A

uckl

and

*36

235

10

00

00

10

00

00.

0

UH

ND

Dur

ham

3049

3018

813

21

10

3.3

4.6

3.3

4.6

4.1

Sun

der

land

3385

3575

2330

(2)

6(1)

6(2)

14

8.6

10.1

8.3

98.

8

S. T

ynes

ide

1619

1574

59

32

01

4.9

74.

97

6.8

Gat

eshe

ad17

7519

9812

87(

2)5(

1)0

310

.76.

59.

66

7.0

New

cast

le R

VI

5982

6368

36(1

1)55

(14)

17(5

)20

(8)

5(5)

11(4

)8.

911

.86.

28.

36.

6

N. T

ynes

ide

1130

532

10

10

00

1.8

01.

80

2.4

Wan

sbec

k21

9426

5610

(1)

13(3

)6

52

2(1)

7.3

6.8

6.8

5.6

5.9

Ber

wic

k39

280

00

00

00

00

00.

0

Aln

wic

k49

510

01(

1)0

00

20.4

00

00.

0

Hex

ham

235

198

00

00

00

00

00

0.0

Car

lisle

1693

1819

12(2

)5

12

20

7.7

3.8

6.5

3.8

4.8

Wes

t C

umb

erla

nd13

5313

742

04

40

14.

42.

94.

42.

93.

7

Pen

rith

8974

00

00

00

00

00

0.0

Tota

ls32

983

3386

815

818

573

6717

327

7.4

5.8

6.3

6.2

Per

inat

al M

ort

alit

y S

urve

y (P

MS

)

23

RMSO Annual Report 2010Ta

ble

3.4

: No

rth

Eas

t, N

ort

h C

umb

ria

and

“N

ort

hern

Reg

ion”

: Tim

ing

of

dea

th b

y Lo

cal A

utho

rity

200

7 &

200

8. In

fant

Mo

rtal

ity

rate

by

Loca

l Aut

hori

ty20

07 &

200

8 an

d f

or

2006

-200

8

Loca

l Aut

hori

tyR

egis

tere

d T

ota

lB

irth

s (O

NS

)S

tillb

irth

sE

arly

Neo

nata

lD

eath

s(0-

6d)

Late

Neo

nata

lD

eath

s (7

-27d

)P

ost

Neo

nata

lD

eath

s (2

8-36

5d)

Infa

nt M

ort

alit

y R

ate

2007

2008

2007

2008

2007

2008

2007

2008

2007

2008

2007

2008

06/0

8

Har

tlep

ool

1179

1172

68

51

00

71

10.2

1.7

6.5

Sto

ckto

n on

Tee

s22

9124

5915

147

70

35

35.

25.

35.

9

Mid

dle

sbro

ugh

1991

1901

1010

24

24

44

46.

34.

7

Red

car

& C

leve

land

1532

1591

46

34

00

23

3.3

4.4

4.7

Dar

lingt

on12

6113

444

73

33

10

44.

86

6.9

Cou

nty

Dur

ham

5657

5721

2735

1012

44

96

4.1

3.8

4.7

Sun

der

land

3274

3312

2425

82

26

63

4.9

3.3

3.9

Sou

th T

ynes

ide

1703

1677

58

32

11

41

4.7

2.4

4.4

Gat

eshe

ad22

5623

6315

129

60

32

64.

96.

36.

4

Nor

th T

ynes

ide

2279

2425

919

43

11

11

2.6

2.1

3.0

New

cast

le32

4933

0813

179

120

53

03.

75.

13.

9

Nor

thum

ber

land

3055

3111

1518

106

34

71

6.5

3.5

4.4

No

rth

Eas

t29

727

3038

414

717

973

6216

3250

334.

74.

24.

7

Alle

rdal

e10

0598

64

32

20

12

14

4.1

4.5

Car

lisle

1131

1229

84

22

20

33

6.2

4.1

4.2

Cop

elan

d73

674

71

03

30

01

15.

45.

44.

4

Ed

en45

547

21

00

00

00

10

2.1

4.3

No

rth

Cum

bri

a33

2734

3414

77

72

16

64.

54.

14.

4

“NO

RT

HE

RN

RE

GIO

N”

3305

433

818

161

186

8069

1833

5639

4.7

4.2

4.7

1985Data collectionbegan in

No

rthe

rn C

ong

enit

al A

bno

rmal

ity

Sur

vey

(No

rCA

S)

24

No

rthe

rn C

ong

enit

al A

bno

rmal

ity

Sur

vey

(No

rCA

S)

25


Northern CongenitalAbnormality Survey(NorCAS)

25.0

Pre

vale

nce

per

10,

000

reg

iste

red

bir

ths

Year

20.0

15.0

All neural tube defectsAnencephalySpina bifidaSpina bifida with hydrocephalus

1985

1987

1989

1991

1993

1995

1997

1999

2001

2003

2005

2007

10.0

5.0

0.0

Introduction

The Northern Congenital Abnormality Survey(NorCAS) is a collaborative survey of congenitalanomalies occurring in pregnancies to mothersresident in the North East and North Cumbria.Data collection began in 1985 and has beencontinuous since then. Figure 4.1 shows trends inneural tube defects over the period of datacollection by NorCAS. NorCAS providesepidemiological monitoring of the frequency andnature of congenital anomalies for the North Eastand North Cumbria and supports research into thecauses and consequences of these conditions.

With the cessation of the National CongenitalAnomaly System (NCAS, see below), NorCAS isthe sole provider of surveillance of congenitalanomalies for the North East and North Cumbria.

NorCAS is an active member of both the BritishIsles Network of Congenital Anomaly registers(www.binocar.org.uk) and is a full member of theEuropean Surveillance of Congenital Anomalies(EUROCAT; www.eurocat-network.eu). Thesepartnerships provide NorCAS with furtheropportunities for data validation and researchcollaboration with other congenital anomalyregisters.

Figure 4.1. Selected neural tube defects and allneural tube defects (without co-occurringchromosomal anomalies) 1985 to 2008.

The NorCAS is the longest running continuous congenital anomalyregister in the UK. With the abolition of the National CongenitalAnomaly System, NorCAS is the sole provider of surveillance ofcongenital anomalies for the North East and North Cumbria.

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Regional Screening

The RMSO, supported by the NorCAS SteeringGroup, continues to explore ways to support theimprovement of antenatal detection rates forcongenital anomalies.

A NorCAS review of the benchmark anomalieschosen by the NHS Fetal Anomaly ScreeningProgramme (Table 4.1) for assessing screeningquality identified concerns with the categorisationof the anomaly groups and the methodology todetermine whether an anomaly was “detected” or not.

Table 4.1. NHS Fetal Anomaly ScreeningProgramme anomaly groups

Anomaly group ICD codes ICD text

Anencephaly Q00.0, Q00.1, Q00.2 Anencephaly, craniorachischisis, iniencephaly

Spina bifida Q05.0-.9Spina bifida (includes open and closed spina bifida)

Holoprosencephaly Q04.1, Q04.2Arhinencephaly, holoprosencephaly (includesalobar, semilobar, and lobarholoprosencephaly)

Serious cardiacQ20.0, Q20.3,Q21.3, Q22.5,Q23.4, Q25.1

Common arterial trunk, Persistent truncusarteriosus; Discordant ventriculoarterialconnection, Dextrotransposition of aorta,Transposition of great vessels (complete);Tetralogy of Fallot; Ebstein’s anomaly;Hypoplastic left heart syndrome; Coarctation of aorta

Diaphragmatic hernia Q79.0 Congenital diaphragmatic hernia

Gastroschisis Q79.3 Gastroschisis

Exomphalos Q79.2 Exomphalos

Bilateral renal agenesis Q60.1 Renal agenesis, bilateral

Lethal/severe skeletaldysplasias

Q77.0, Q77.1,Q77.2, Q77.8, Q78.0

Achondrogenesis, type I & type II;Thanatophoric short stature; Short ribsyndrome, Asphyxiating thoracic dysplasia[Jeune]; Jeune’s syndrome; Otherosteochondrodysplasia with defects of growthof tubular bones & spine, Acrodysostosis,Kniest dysplasia, Metatropic dwarfism,Metaphyseal chondrodysplasia; Osteogenesisimperfecta

Cleft lip ± cleft palate Q36, Q37 Cleft lip; Cleft palate with cleft lip

Trisomy 21 Q900-Q909 Down’s syndrome (T21)

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Some of the anomaly groups used by the NationalScreening Committee are too rare over clinicallysignificant time-scales to give large enoughnumbers to be a meaningful quality indicator.Other anomaly groups, such as anencephaly, had100% completion rates for all units. The 100%detection rate demonstrates complete casedetection which is good for the families affectedbut whilst it stays at 100% is not a usefulcomparative quality indicator.

The process of determining whether an anomaly isto be counted as detected or not can becomplex1. For Table 4.2, the following rules fordeciding whether or not an anomaly was detectedwere applied:

1. If the indication for termination was confirmed,then failure to report or search for anotheranomaly after termination had been agreed wasnot considered an error. For example, if trisomy18 was detected antenatally but a cleft lip wasnot mentioned on the antenatal scans, thiswould not be counted as a non-detection of thecleft lip.

2. If mother had a positive screening result, butdeclined further testing, this was counted asdetected.

3. Due to the complexity of determining theconcordance between antenatal and postnatalcardiac anomaly diagnosis, any postnatallydiagnosed severe cardiac anomaly that had anycardiac anomaly diagnosed antenatally wascounted as detected. This is potentiallyproblematic because antenatal diagnoses of acardiac defect determine decisions about care,such as where to deliver for duct dependentlesions.

These concerns are being considered by a sub-committee of the NorCAS Steering Group and willbe fed back to the National Screening Committee.

1 Richmond S, Atkins J. A population-based study of prenatal diagnosis of congenital malformation over 16 years. BJOG: AnInternational Journal of Obstetrics and Gynaecology 2005;112:1-9.

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DisclosureThe RMSO, along with the survey steering groupsand NEPHO’s Caldicott Guardian continue tomonitor the most recent rulings and guidelines inrelation to publishing statistics on sensitivesubjects, such as terminations. At present, theRMSO follows the guidelines published by theOffice for National Statistics(http://tinyurl.com/y8epsgn) taking into accountmore recent rulings published by the InformationCommissioner (see http://tinyurl.com/yhsubf2 forinformation on a recent Freedom of InformationAct challenge).

The RMSO is able to give advice relating tomaternal and child health matters and disclosureto our data providers and users.

The National Congenital Anomaly System(NCAS)

A consultation was carried out in the spring of2010 to determine the direction of the collection ofnational congenital anomaly data. The RMSOsupports the consultation’s mainrecommendations of:

• Ending the collection of congenital anomaly dataon paper forms

• Maintaining the NCAS legacy computer system,without new developments, as long as it isneeded

• Publishing the annual figures for anomaliesreported in 2008 as the final output from NCAS

• Working with the Department of Health and otherinterested parties towards a properly funded,comprehensive national system based on thework of the existing regional registries.

A list of current research projects involvingNorCAS data and recent publications is given onthe RMSO website (www.rmso.org.uk).

Table 4.2. Percentage of anomalies detectedantenatally by Trust 2005-2008

Trust AnencephalySeriouscardiac

Cleft lip ±cleft palate

Bilateralrenalagenesis

Lethal/severeskeletaldysplasias

Trisomy 21

North Cumbria 100% 41% 44% 100% 75% 63%

NorthumbriaHealthcare

100% 24% 67% 100% 75% 64%

NewcastleHospitals

100% 47% 72% 100% 100% 61%

Gateshead Health

100% 33% 50% n/a 100% 42%

South Tyneside 100% 71% 70% n/a n/a n/a

City HospitalsSunderland

100% 40% 81% 100% 100% 40%

County Durham and Darlington

100% 40% 70% 100% 100% 63%

North Tees and Hartlepool

100% 54% 67% 100% 100% 66%

South TeesHospitals

100% 38% 78% 100% 67% 56%

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NorCASsurveillanceof congenitalanomalies

is the only local source for

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537in 2008

twin pregnancies

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Implementing regional standards of care

The regional standards of care were finalised andwidely disseminated to clinical teams in July 2009.The standards are available on the RMSO website(www.rmso.org.uk).

Central to these standards is the concept of thedevelopment of multidisciplinary teams who willbe responsible for developing protocols for themanagement of multiple pregnancies, and wherepossible delivering care for these women withindedicated clinics and antenatal classes.

In October 2009, a workshop was held withsupport from the Multiple Birth Foundation (MBF)to identify and help overcome barriers toimplementation. It quickly became apparent thatdifferent Trusts and hospitals are at differentstages of implementation - with many hospitalsreporting that the organisational standards areespecially challenging.

The following were raised as significant issues:

• Clarification that “dedicated clinics” are simplythose in which the lead consultant(s) sees allwomen with multiple pregnancies in that unit. Itis anticipated that in the majority of units, theseclinics will also offer care to women with otherpregnancy-related problems

• Reassurance that additional funding should not(or rarely) be needed – i.e. that the predominantaim of the organisational standards is thereorganisation of (rather than addition to)existing care systems and resources

• Provision of clear care pathways, as well asmodels and content of antenatal education carepackages

• Reassurance of other health workers that therewill be no impact on the skill levels of thoseinvolved with intrapartum care

Northern Survey ofTwin and MultiplePregnancy (NorSTAMP)The North East and North Cumbria are unique in developing aregional clinical network, supported by collaborative clinical audit, toimprove the quality of care and outcomes of pregnancy in multiplepregnancy. The importance of improving care in this high risk groupof pregnancies has been recognised by the National Institute forHealth and Clinical Excellence (NICE – www.nice.org.uk). NICE isdeveloping clinical guidance for the care of multiple pregnancieswhich is expected to be published in September 2011. Experts fromwithin the North East and North Cumbria are contributing to thisguidance.

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Audit indicators and targets

Analysis of NorSTAMP data from 1998-2005 wasundertaken to provide a baseline for monitoringfuture trends. Data for these years are the mostrecent with complete data available. In 2005, asystem for collecting data with explicit consentwas introduced. Notification and consent rates for2006 and 2007 were also analysed to assesscompleteness of data collection since the consentsystem was introduced. The data were presentedat the annual workshop in October 2009(www.northeastpho.org.uk/event.php?eid=425).

Key benchmarks were as follows:

• 97% of registered twin births delivered in 2006-2007 were notified by units. Six of the 15participating units achieved 100% notification.

• Overall, 85% of notifications in 2006-2007 hadcomplete data collection and 66% had evidencethat consent had been obtained from themother. Eight units achieved 90% datacompletion. Unconsented cases are anonymisedwith the loss of some important information.

• Chorionicity2 is a major determinant of outcomeand is needed for accurate surveillance ofoutcome. Six units achieved the 95%benchmark for the period 1998-2005. In 2001and 2002, 95% ascertainment was achievedacross the region, demonstrating that high levelsof ascertainment are achievable.

• In 2003-2005, the stillbirth rate in all twins was20.7 per 1000 total births and the neonatalmortality rate was 17.2 per 1000 live births. Thecorresponding rates for singletons were 5.3 and2.7 for stillbirth and neonatal mortalityrespectively. Thus, twins remain at considerablyhigher risk than singletons.

• About half of twins were delivered by caesareansection in 2003-2005, with no differencebetween monochorionic and dichorionic twins.

• 3.1% of dichorionic twins and 1.6% ofmonochorionic twins had a second twindelivered by caesarean section following vaginaldelivery of a first twin, during 2003-05.

• Autopsy rates for multiples, as for singletons,remain well below recommended levels.

A detailed analysis of trends in mortality outcomesby chorionicity was undertaken. This investigatedtrends in time in stillbirth and neonatal mortality,and compared outcomes in singletons and twinsand in monochorionic and dichorionic twins. Thefindings are shown in Figures 5.1 and 5.2.

As a result of this analysis the steering grouprecommended that further analysis of stillbirthsshould be undertaken, to investigate whether anyaspects of clinical management could be identifiedfor local improvement and action. This is plannedfor 2010.

The next steps for the NorSTAMP audit are toimplement a new, simpler procedure for obtainingconsent, and to review data collection items sothat a greater range of clinically relevant outcomesand standards can be monitored. Continuedregional networking is essential if NorSTAMP datais to inform the work of clinical teams to improvequality of care for these high risk maternities.

2The majority of twin pregnancies are not identical. In this case their placenta is dichorionic and diamniotic (each baby with its ownplacenta and amniotic sac). The chorionicity of identical twins depends on the gestation at which the zygote (developing fertilisedegg) divides and creates two embryos. Early division leads to dichorionic/diamniotic pregnancies, which are similar to non-identicaltwins in terms of risk for adverse outcomes. Later division leads to either monochorionic/diamnionic (one placenta and twoamniotic sacs) or monochorionic/monoamniotic placenta (both babies sharing one placenta and one amniotic sac).Monochorionic/monoamniotic pregnancies have the highest risk for adverse outcomes.

Twins have a higherrisk of stillbirth andneonatal death thansingletons.

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Figure 5.1: Stillbirths and neonatal mortality in singletons and twins

• Twins were at nearly four-fold increased risk of stillbirth and at eight-foldincreased risk of neonatal death compared with singletons.

• The stillbirth rate for twins did not change significantly over time, remaining ataround 20 per 1000 births.

• The neonatal mortality rate declined, from 26.1 to 17.2 per 1000 live births(RR=0.66; 95% CI 0.47-0.93).

Figure 5.2: Mortality in twins by chorionicity

• Monochorionic (MC) twins were at much higher risk for stillbirth rate thandichorionic (DC) twins (RR 4.6, 95% CI 3.3-6.5).

• Monochorionic twins were at slightly higher risk than dichorionic twins forneonatal mortality (RR=1.4, 95% CI 1.0-2.0).

• Neonatal mortality reduced by about 40% in dichorionic twins, from 24.9 to14.8 per 1000 live births (RR=0.6 ; 95% CI 0.4-0.9) (Figure 5.2).

• For MC twins, there was no statistically significant change in either stillbirth(from 49.5 to 59.6 per 1000, RR=1.2, 95% CI 0.8-1.9) or neonatal mortality(from 26.8 to 33.3, RR=1.2, 95% CI 0.7-2.4)

SingletonsStillbirth (per 1000 births)Neonatal death (per 1000 live births)

Twins

1998-2002 2003-20051998-2002

40

35

30

25

20

15

10

5

0

Rat

e p

er 1

000

2003-2005

DCStillbirth (per 1000 births)Neonatal death (per 1000 live births)

MC

1998-2002 2003-20051998-2002

70

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40

30

20

10

0

Rat

e p

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000

2003-2005

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Data summary

A total of 5372 twin pregnancies, 127 triplet pregnancies and 10 higher order multiple pregnancies havebeen notified to NorSTAMP during the years 1998-2008. Table 5.1 shows the number of multiplepregnancies, twin maternities (twin pregnancies with at least one live birth or stillbirth) and twinning ratesby year from 2000, using NorSTAMP data augmented by data from ONS. The 2007 data has beenupdated which makes the figures slightly different from those given in the 2007 annual report.

Table 5.1: Numbers of multiple pregnancies and twinning rates, 2000-2008(Data for 2007 have been updated; data for 2008 are provisional)

Table 2: Stillbirths and infant deaths in twin maternities for 2003-08 using datafrom NorSTAMP and PMS

*Twin maternities are defined as twin pregnancies with at least one livebirth or stillbirth

2000 2001 2002 2003 2004 2005 2006 2007 2008

Twin pregnancies 464 439 496 474 482 515 551 488 537

Twin maternities* 426 418 479 453 461 489 531 463 517

Tripletpregnancies 15 10 13 12 9 8 8 4 8

Higher ordermultiplepregnancies

1 2 0 1 0 2 1 0 0

Twinning rate / 1000 maternities 14.5 14.6 16.6 15.2 15.0 15.7 16.5 14.2 15.5

Total maternities 29331 28615 28888 29851 30725 31102 32114 32578 33287

2003 2004 2005 2006 2007 2008Total

2003-2005Total

2006-2008

Stillbirths 17 16 25 18 9 9 58 36

Early NND 8 7 19 21 17 12 34 50

Late NND 3 5 4 7 2 7 12 16

Post NND 3 4 5 3 2 6 12 11

PNMR (/1000 totalbirths)

27.6 24.9 45.0 36.7 28.7 20.8 33.6 29.2

Infant mortality(/1000 live births)

16.2 18.1 30.0 30.5 23.4 25.0 21.7 26.4

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Increase inpregnancies

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During 2009, NorDIP focused on a number ofdevelopments aimed at improving standards ofcare and outcomes for pregnant women withdiabetes.

NICE guidance on Diabetes inPregnancyIn 2008, NICE published guidance for themanagement of diabetes in pregnancy.3

The NorDIP Steering Group agreed that NICEstandards would replace regional standards from2008. NorDIP continues to audit regionalperformance against relevant evidence basedstandards of care.

National Diabetes in Pregnancy Audit Work is underway, led by NHS Diabetes, todevelop a national audit of diabetes in pregnancy,with a target date for implementation in 2011.NorDIP is one of three regions piloting theproposed national dataset. Preliminary resultswere presented at the Diabetes UK AnnualProfessional Conference 2010.4 The next phase ofthe programme will test the dataset prospectivelyin a number of regions. Following this, a diabetesin pregnancy audit will be established as part ofthe National Diabetes Audit. This will requirereview of NorDIP data collection and analysis toensure comparability with the national dataset.

Northern Survey of GestationalDiabetes (NorGES)Five maternity units took part in a pilot study toassess the feasibility of extending NorDIP toinclude gestational diabetes (GDM; diabetes firstrecognised during pregnancy). The aim of the pilotwas to audit all cases of gestational diabetesdiagnosed and delivered between April 2008 andJune 2009 against the regional consensusstandards for gestational diabetes agreed in 2007.Data were available on 103 notified pregnancies.

1. Standards of care and outcomes

- 3% of infants suffered perinatal mortality ormajor congenital anomaly. This is higher than inthe background population, but was notstatistically significant.

- 14% of babies weighed over 4000g

- There were high rates of intervention in labourand delivery, with 48% of deliveries bycaesarean section

- 20% of women had HbA1c of 6.1% or more atdiagnosis; 64% required treatment with insulinor metformin during pregnancy

- 17% of women had a persistent postnataldysglycaemia

Overall, most women received care in line withregional recommendations. There was scope forimprovement particularly in relation to early referralof women with previous GDM; monitoring of fetalgrowth; and postnatal assessment of bloodglucose in both mothers and infants.

Northern Diabetesin PregnancySurvey (NorDIP)The Northern Diabetes in Pregnancy Survey (NorDIP) is a survey of allpregnancies in women with pre-gestational diabetes within the NorthEast and North Cumbria. NorDIP was established in 1994 and is co-ordinated by a steering group with representatives from all 11 of theparticipating maternity units.

3 NICE guidance on Diabetes in Pregnancy, July 2008. Available at: http://guidance.nice.org.uk/CG63/Guidance/pdf/English4 Lewis-Barned N, Bell R, Holman N, Stephens H, Allen L, Dornhurst A, Modder J, Hillson R, Young B, Murphy HR. Developmentand evaluation of a national diabetes in pregnancy dataset. Diab Med 2010 27 S30.

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2. Screening for gestational diabetes

During the pilot study, maternity unitsimplemented universal blood glucose screening asrecommended by the regional consensusstandards for gestational diabetes. Theseconsensus standards were agreed before NICEpublished their recommendation for risk factorbased screening for gestational diabetes.5

The universal screening method used in the pilotstudy yielded a case diagnosis rate of 8 per 1000deliveries, lower than anticipated. However, abouta quarter of the cases diagnosed by screening hadno NICE risk factors and would likely be missedunder the NICE recommended approach (Figure6.1). The NICE approach would require at least16% of women to have an antenatal OGTT (basedon recent booking obesity rates alone, withoutconsidering other risk factors). The pilot studywas not designed to evaluate alternative methodsof screening for gestational diabetes. Thereremains insufficient research evidence todetermine the most cost-effective method ofscreening for gestational diabetes.

3. Extension of NorDIP to include gestationaldiabetes

There is clear enthusiasm for extending NorDIP toinclude NorGES among participating pilot sites.The data produced by the pilot survey hasrevealed important areas for service improvement.On-going data from a greater number of unitswould provide further opportunities for learningand quality improvement. Consideration will begiven to extending NorDIP to include gestationaldiabetes.

NorDIP audit: quality of care andoutcomes of pregnancy 2005-2007An analysis of 495 pregnancies reported to NorDIPand delivering between 2005 and 2007 wascompleted. It assessed unit by unit performanceagainst regional standards of care, and comparedregional performance with that in 1998-2004published by the RMSO/NEPHO in 2005.6

The audit revealed a continued increase inpregnancies complicated by diabetes, particularlytype 2 diabetes. There was limited evidence ofimprovement in standards of care. Preparation forpregnancy was sub-optimal in a high proportion ofcases and remains the key priority forimprovement, in order to reduce the high rates ofanomaly and perinatal mortality experienced bywomen with diabetes.

Figure 6.1: Risk factor prevalence in gestationaldiabetes cases

5 Northern Survey of Diabetes in Pregnancy: audit against standards of care. NEPHO occasional paper no 19; 2005: NEPHO,Stockton-on-Tees. Available at: http://www.dur.ac.uk/ne.pho/view_file.php?c=1087

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A summary of the audit has been published byNEPHO6 and the full report circulated to allparticipating units. Key findings are presentedbelow.

1. Prevalence of pre-gestational diabetes

There were 498 offspring from 495 notifiedpregnancies. The overall rate of pregnancycomplicated by pre-gestational diabetes was 5.2per 1000 births, an increase on 4.6 per 1000reported for 2002-2004.7 148 (30%) were inwomen with type 2 diabetes or MODY, a furtherincrease on 2002-2004 when 26% of notifiedpregnancies were in women with type 2 diabetes.

2. Outcomes (Figure 6.2)

The overall aim of improving the quality of care isto minimise adverse pregnancy outcome. Seriousadverse outcomes of pregnancy remainuncommon and are not presented by unit due tothe large year on year variation in these events.

Of the 498 offspring, 45 (9%) were fetal lossesbefore 24 weeks, 15 (3%) were stillbirths and 5(1%) died during the first year of life. Ten (2%)pregnancies resulted in termination and there were29 (5.8%) major congenital anomalies.

Perinatal mortality rateThere were 16 perinatal deaths and 443registerable births, with an overall perinatalmortality rate of 36 per 1000 births in 2005-2007.This compares with 48 per 1000 in 1996-1998, 27per 1000 in 1999-2001 and 23 per 1000 in 2002-2004.7 The perinatal mortality rate in thebackground population for 2005-2007 was 7.8 per1000 births.8

Congenital anomaly rateIn 2005-2007, the overall congenital anomaly ratewas 58 per 1000 offspring (births, terminations andfetal losses). This compares with 94 per 1000 in1996-1998, 67 per 1000 in 1999-2001 and 66 per1000 in 2002-2004.7 The background rate for the“Northern Region” is 23.5 per 1000.8

Figure 6.2: Perinatal Mortality Rate andCongenital Anomaly Rate for the time periods1996-1998, 1999-2001, 2002-2004, and 2005-2007

3. Preparation for pregnancy

There was little evidence of improvement inindicators of adequate pregnancy preparation.Forty one percent of women took folic acidpreconception, the same as in 2002-2004. Therewere small improvements in recording ofpreconception HbA1c and early booking. Therewas however a reduction in the proportion ofwomen with HbA1c less than 7% in earlypregnancy, from 38% in 2002-2004 to 32% in2005-2007. There was wide unit variation (figures6.3-6.5).

6 Bell R, Crowder D, Bilous R. Northern Diabetes in Pregnancy Survey (NorDIP): Regional and unit-based audit analysis 2005-2007.NEPHO Occasional Paper 38. Ed. C Bradford. Stockton on Tees. Available at: http://tinyurl.com/2vj4upk.7 Bell R, Bailey K, Cresswell T, Hawthorne G, Critchley, J, Lewis-Barned N. Trends in prevalence and outcomes of pregnancy inwomen with pre-existing type 1 and type 2 diabetes. BJOG 2008;115:445-452.8 RMSO 26th annual report. 2009. NEPHO/RMSO: Stockton-on-Tees. Available at:http://www.nepho.org.uk/publications/692/RMSO_Annual_Report

100

90

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70

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50

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1996-1998 1999-2001 2002-2004

Years

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Perinatal Mortality RateCongenital Anomaly Rate

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Figure 6.3: Folic acid taken pre-pregnancy, by unit, 2005-2007 (% of all pregnancies)

Figure 6.4: HbA1c recorded within 3 months of last menstrual period, by unit, 2005-2007(% of all pregnancies)

100%

90%

80%

70%

60%

50%

40%

30%

20%

10%

0%West

CumberlandRVI QEH Sunderland James Cook

and FriarageNorth

DurhamWansbeck &N. Tyneside

Unit (Hospital Booked)

2005-2007 2002-2004

North Tees& Hartlepool

CumberlandInfirmary

SouthTyneside

Darlington &Bishop

Auckland

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80%

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60%

50%

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30%

20%

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2005-2007 2002-2004


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SouthTyneside

Darlington &Bishop

Auckland

All Units

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Figure 6.5: Bookings made at less than 10 weeks, by unit 2005-2007 (% of all pregnancies)

Table 6.1: Outcome of diabetic pregnancies 1999-2008 (Data for 2007 has been updated; data for2008 is provisional)

100%

90%

80%

70%

60%

50%

40%

30%

20%

10%

0%West


and FriarageNorth



% o

f Boo

king

s

2005-2007 2002-2004


CumberlandInfirmary

SouthTyneside

Darlington &Bishop

Auckland

All Units

Outcome 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008

Women registered 136 128 130 141 155 170 166 165 164 195

Live births 113 111 102 122 137 154 140 140 147 179

Fetal loss

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Improving servicesfor children and

young people withcerebral palsy

VisionThe quality of health care that children and youngpeople with cerebral palsy (CP) receive variesgreatly depending on where they live. This is trueglobally, in the UK, across Europe and, of specificinterest to this report, within the North East andNorth Cumbria. There is inequity of access to highquality health care and to the best possibleoutcomes for children with CP and their families.There are currently no evidence based guidelinesto underpin the clinical care of children with CP.

The North of England Collaborative Cerebral PalsySurvey (NECCPS) is now in its 20th year of datacollection. Professor Allan Colver stepped downas Chair in 2009 having led the survey since itsinception. Dr Karen Horridge, ConsultantPaediatrician with a special interest inneurodisability at Sunderland Royal Hospital, isnow the Chair of NECCPS. Karen has been aconvenor for the survey in North Tees and morerecently in Sunderland and is keen for NECCPS toplay a pivotal role in improving services forchildren and families with cerebral palsy in theNorth East and North Cumbria.

The NECCPS steering group want to improvereporting rates to the survey and to use the surveydata to develop higher quality health care forchildren and young people with CP across theNorth of England. Their goal is ensure the bestpossible outco

Documents

Regional Maternity Survey Office 27th Annual Report 2010 annual report 2010 electronic versio… · 27th Annual Report 2010 Delivering independent intelligence for health and wellbeing