Pregnancy Screening Pathway

Dr Surindra Maharaj

Consultant Obstetrician

NHS Lanarkshire

16 June 2009

Antenatal Screening for Sickle Cell & Thalassaemia Pathway

• Screening for Clinically Significant SCD– Hb S; Hb SC; HbS/β-thal; Hb SD;

Hb SO; Hb S/HPFH

• Screening for Other Haemoglobinopathies– Β-thal major/intermedia; Hb H;

Hb E/β thal; Hb SE

Other

• Clinically benign Haemoglobinopathies– HB C/β thal; Hb D/β thal; Hb DD; Hb CC;

Hb CE; Hb DE; Hb EE– Several other variants will also be detected

• There are >1,000 types/ Hb variants or mutations– Can be inherited in various combinations

• Correct counselling is extremely important

Why are we Screening Now?

• CEL 31– The introduction of haemoglobinopathy

screening both during pregnancy and for newborn babies

– NHS Boards will be responsible for implementing the changes in maternity and child health services required to deliver these improvements no later than 31 March 2011

Who to screen?

• Universal Screening vs

• Selected Screening

• For Antenatal purposes, Scotland is considered as having a low prevalence for SCD (<1.5 /10,00 births with SCD)

• A targeted screening programme, based on the Family Origin Questionnaire is proposed

•Trigger Recognition

•Conveying this Informationto laboratory

•SWMHR Redesign

•Use of IT/PMS to aidthese concerns

• Rule/Logic based DataEntry

• Easy Lab access to information

Means a change in how ethnicity data is

collected and coded

When to screen

• Antenatally

• Before pregnancy– Pre-pregnancy counselling clinics– Assisted conception clinics

• If screened before pregnancy, the results must be recorded and accessible for any subsequent pregnancy

Antenatal Pathway

Pregnancy ConfirmedCheck previous testing

FBC Previous result available

MCHFamily Origin Questionnaire

Determine inclusion/exclusion criteria

UnaffectedMother

Carrier

Affected Mother

INCLUDEDEXCLUDED

Record in SWHMR

Included

Information GivenMaternal Test

Offered

Unaffected Mother

Record in SWHMRMaternal Low Risk

Letter

Carrier MotherContact her to

offer Paternal testing

Affected Mother

Urgent apptConsultant/Team CareOffer Paternal testing

Aim to perform screening by 8-10

weeksDeclines

Record in SWHMR

Accepts Consented

TEAM: Obstetrician, Haematologist, Hb Counsellor, Midwife, Paediatrician

Patient InformationLeaflet

http://sct.screening.nhs.uk/

Paternal Testing

Mother declinesFather declines or unavailable

Offer Counselling visit with Team Specialist to discuss risk

Declines

Record in notesInform Obstetric teamInform Paediatric team

Accepts

Paternal test takenFamily Origin recorded

Consent for result release

note: the father himself may have previous results available

Unaffected Father

Record in SWHMRResult to father/GP

Carrier FatherContact them to

offer further Counselling

Affected FatherUrgent apptCounselling

Inform GP/Paeds

Paternal Test Accepted

Consultant Haematologist

Counselling and Risk Discussion

Declines

Record in NotesObs/PaedNotification

Accepts

Offer Prenatal DiagnosisIf appropriate

Record in NotesObs/PaedNotification

Declines

Accepts

Prenatal DiagnosisClinical Genetics

Aim to achieve thisby 12+6 Weeks

Results of Prenatal Diagnosis

Results of Prenatal Diagnosis

Unaffected Fetus

Record in SWHMRResult to parents/GP

Carrier Fetus

Affected Fetus

Counselling VisitOptions discussed

Termination

Termination Arranged

Neonatal Screen

Paediatric notification

Continuing

Record Screening Status on Birth

Notification

Potential problem areas?

• We need earlier information dissemination and earlier booking– The majority of women book between 11-14– Major workforce implications

• The issue of late bookers

• We need for rapid testing, rapid reporting and rapid patient feedback– Small diagnostic and therapeutic window

Potential problem areas?• We need timely partner testing

• We need timely reporting of PND– Glasgow and Oxford

• Increased workload for midwives

• Earlier bookings may mean more patients– Seeing women who would have miscarried

had booking been later

• KCND issues

• Interpretation services

The Challenge for Antenatal Services

• Staff Training and Awareness– Midwives– Obstetricians– Paediatricians– Haematologists

• Identifying a Specialist Care Team• Assess the need/role for a Specialist

Haemoglobinopathy Counsellor• The role of the screening coordinators

http://sct.screening.nhs.uk/

The Challenge for Antenatal Services

• Reorganisation of antenatal services– Earlier booking required– Community awareness programmes– First contact

• Pharmacies/Chemists• Midwives: Can the First Visit be abolished?• Telephone assessments• Royal Mail/IT/PMS/Remote Case Note Generation• GPs and GP receptionists• Information campaign

The Challenge for Antenatal Services

• Reorganisation of antenatal services– Local laboratories and transport

• Fast turnover and reporting is the goal• Report standardisation• Quality control and certification• Obtaining previous screening results

– Central laboratories and communication• Glasgow • Oxford

– Laboratory IT Links essential

The Challenge for Antenatal Services

• Reorganisation of antenatal services– Who receives and gives the results to patients– The roles of:

• Midwife• Hb Screening coordinator/practitioner• “Counsellor”

– Timely referral to all of these HCPs– Expansion of clinical services

• Clinics-antenatal and neonatal• PND/Genetics/Clerical support