Accuracy of reporting abortions with Down syndrome in England and Wales

Joan MorrisAnna Springett

BINOCAR Scientific MeetingCongenital Anomaly Registers: maximising a valuable resource

Tuesday 7th October 2104

Reported number of abortions with Down syndrome in England and Wales

National Down SyndromeCytogenetic Register

Department ofHealth

0

200

400

600

800

1000

1200

Num

ber

of a

bort

ions

1990 1995 2000 2005 2010 2015Year of diagnosis

• Why the difference ?

• What should we do about it ?

NDSCR data collection

• All cytogenetic laboratories notify the NDSCR of any diagnosis of trisomy 21 or related karyotype

• Prenatal and antenatal diagnoses

• Outcome of prenatal diagnoses (ie Abortion, fetal loss or birth) is obtained by contacting referring clinician

www.wolfson.qmul.ac.uk/current-projects/downs-syndrome-register

Potential inaccuracies in NDSCR numbers of abortions

• Prenatally diagnosed NDSCR cases may have missing outcomes– However 90% of prenatally diagnosed cases

result in an abortion– Therefore it is assumed that 90% of the cases

with missing outcomes have been aborted

Department of Health data collection• Under the Abortion Act 1967 an HSA4 form must

be completed by the doctor undertaking the termination of pregnancy.

• The grounds for abortion must be specified.– Grounds E : That there is a substantial risk that if the

child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.

Potential inaccuracies in Department of Health numbers of abortions for Down syndrome

• Grounds E not specified

• Prior to 2012 only one condition reported in publications

• Cytogenetic diagnosis is not required

Matching NDSCR and DH Down syndrome abortions in 2011-2012

• All abortions in England and Wales in 2011-2012 from DH

• All reported abortions and all unknown outcomes for Down syndrome prenatal diagnoses from NDSCR

Matching NDSCR and DH Down syndrome abortions in 2011-2012

• Common Identifiers– date of birth of the mother– postcode of the mother– gestation of the fetus at abortion– date of abortion – method of diagnosis (2012)

Unmatched NDSCR Down

syndrome abortions

239

Matched NDSCR and DH Down

syndrome abortions †

1032

1006

Unmatched DH Down syndrome abortions

Results

Unmatched NDSCR Down

syndrome abortions

239

Matched NDSCR and DH Down

syndrome abortions †

DH data

861 Down syndrome specified 145 Down syndrome not specified

Ie 14% not specified as DS

1032

1006

Unmatched DH Down syndrome abortions

Unmatched NDSCR Down

syndrome abortions

239

Matched NDSCR and DH Down

syndrome abortions †

1032

1006

Unmatched DH Down syndrome abortions

NDSCR data 906 abortions 100 unknown outcomes

Results

• Around 14% of abortions with Down syndrome are not coded as ground E Down syndrome by DH

• NDSCR records more abortions with DS than DH

Gestation at abortion (weeks)

Unmatched abortions

Matched abortions

Proportion unmatched

abortions (%)

Up to 12 weeks 31 29 5213 - 19 weeks 733 642 5320 – 23 weeks 77 63 5524 and over 16 19 46Unknown 175 153 53 Total 1,032 906 53

NDSCR unmatched abortions

NDSCR unmatched abortions

• From all over England and Wales

First IssueNot reporting abortions

• 1032 abortions with Down syndrome from the NDSCR not matched to an abortion in DH data.

DH commissioned the Royal College of Obstetricians and Gynaecologists to review use of HSA4 abortion forms.

• Uncertainty about who reports the abortion when the abortifacient medication is administered at the Fetal Medicine Centre and the patient returns to the DGH to complete the abortion.

Second Issue

– Not reporting abortions as having Down syndrome• Of the matched abortions, 14% were not recorded as

having Down syndrome in DH data.

Recommendation

• Regional congenital anomaly registers collect accurate information on abortions with fetal anomalies using multiple sources.

• DH information on abortions under grounds E according to anomaly should not be published without clear indication that more accurate information can be obtained from congenital anomaly registers

Thank you to DH for conducting this matching exercise

Matching Department of Health abortion notifications and data from the National Down’s Syndrome Cytogenetic Register and Recommendations for Improving Notification Compliance Department of Health, Sexual Health Team and Analytical team. May 2014