1. Accuracy of reporting abortions with Down syndrome in England and Wales Joan Morris Anna Springett BINOCAR Scientific Meeting Congenital Anomaly Registers: maximising a valuable resource Tuesday 7 th October 2104

2. Reported number of abortions with Down syndrome in England and Wales

3. Why the difference ? What should we do about it ?

4. 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

5. 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

6. 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.

7. 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

8. 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

9. 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)

10. Unmatched NDSCR Down syndrome abortions 239 Matched NDSCR and DH Down syndrome abortions † 1032 1006 Unmatched DH Down syndrome abortions Results

11. 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

12. 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

13. 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

14. Gestation at abortion (weeks) Unmatched abortions Matched abortions Proportion unmatched abortions (%) Up to 12 weeks 312952 13 - 19 weeks 73364253 20 – 23 weeks 776355 24 and over 161946 Unknown 17515353 Total1,03290653 NDSCR unmatched abortions

15. From all over England and Wales

16. First Issue Not 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.

17. Second Issue – Not reporting abortions as having Down syndrome Of the matched abortions, 14% were not recorded as having Down syndrome in DH data.

18. 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

19. 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