Why do counts of terminations of pregnancies diagnosed with Down syndrome in England and Wales differ?

Following yesterday’s Mail on Sunday article and my observation that the data quoted was wrong, many people have asked how the Department of Health abortion statistics can be so different from the terminations recorded by the National Down Syndrome Cytogenetic Register.

The Mail on Sunday reported 693 abortions “linked to Down syndrome” in 2014. This figure comes from figures for England and Wales compiled by the Department for Health (DH). These differ from those reported by the National Down Syndrome Cytogenetic Register (NDSCR).

The DH data comes from forms completed by registered practitioners terminating pregnancies. NDSCR collects data from the cytogenetic laboratories that analyse samples obtained through amniocentesis or chorionic villus sampling (CVS) to diagnose (or not) Down syndrome in pregnancies.

The DH data consistently underreports Down syndrome diagnoses:

2011 2012 2013 2014
National Down Syndrome Cytogenetic Register
Terminations of pregnancies diagnosed with Down syndrome 1134 1131 1108
Department of Health
Abortions by principal medical condition 512 544 590 662
Mentions by principal medical condition 570 613 693
Difference
Number not counted in DH data 622 587 518
Number not counted in DH data as % NDSCR count 45% 48% 53%

These differences were investigated in data matching exercise undertaken by the DH and a review undertaken by the Royal College of Obstetricians and Gynaecologists – published last year.

The NDSCR has recently been merged into a new National Congenital Anomaly and Rare Disease Registration Service (NCARDRS). NDSCR data for 2014 is yet to be published. However, my understanding is that not substantial changes have been detected in the data collected by NDSCR for 2014 and that increases in the abortions recorded as due to a diagnosis of Down syndrome in the DH data are a result of efforts to improve reporting by practitioners terminating pregnancies.

 

 

 

 

Selective terminations of babies with Down syndrome have not risen by 35% in three years

piece in the UK Mail on Sunday claims Department of Health statistics show “women choosing to abort babies with Down’s syndrome and other serious disabilities soars 34% in three years” and that “the biggest proportion was linked to Down’s syndrome, with 693 terminations last year compared with 512 in 2011”. Data collected by the National Down Syndrome Cytogenetic Register (NDSCR) shows this is not the case.

UPDATE (15 June): Amended to correct dates. Mail article refers to 2014 Department of Health data, while NDSCR has only reported to 2013. It remains the case that (a) NDSCR data reports 2% drop between 2011 and 2013 – which is not consistent with 35% rise over 3 years, and (b) DoH abortion statistics since 2011 consistently differ from NDSCR data. More here.

There is a remarkable headline in The Mail on Sunday today claiming terminations of babies with Down syndrome have “soared 34% in three years”. It quotes “an investigation into figures published by the Department of Health”.

In England and Wales, there is a national registry collecting data on prenatal and postnatal diagnoses. Their data (collected since 1989) is widely cited in academic studies and is 94% complete. I’m not sure where the Mail on Sunday (and perhaps more worryingly, the Department of Health) are sourcing their information, but it is way off.

The article claims there were 512 terminations of pregnancies diagnosed with Down syndrome in 2011 and 693 in 2014 – a rise of 181 (35%).

NDSCR reports 1,134 terminations of pregnancies diagnosed with Down syndrome in 2011 and 1,018 in 2013 – a fall of 2% over two years. NDSCR has not yet reported on 2014.

This graph shows the number of terminations of pregnancies diagnosed with Down syndrome (columns) and terminations as a percentage of all diagnosed cases (prenatal and postnatal).

down-syndrome-terminations-england-wales-2004-2013

(Note: The % terminated statistic is not the reduction rate – i.e. the rate at which live births are reduced as a result of screening and selective terminations. This is because approximately 23% of the terminated pregnancies would not have resulted in a live birth.)

Walking the length of England to improve education for children with Down syndrome

Yesterday, Sir Christopher and Wendy Ball completed a remarkable walk from the south coast of England to the border with Scotland, covering over 400 miles to raise funds to improve education for children with Down syndrome.

Sir Christopher Ball and his wife Wendy yesterday reached the Solway Firth near Carlisle in North West England – the end of an amazing walk from Littlehampton in West Sussex on the South Coast. Over the past two years, walking for a few days at a time, they have covered over 400 miles, following waterways the length of the country.

Sir Christopher Ball and his wife Wendy

As they have made their way across England, Christopher has recorded their progress with a series of poems and reports online.

Sir Christopher, formerly the Warden of Keble College, Oxford, director of learning at the RSA and chancellor of the University of Derby, has served as Chairman of Down Syndrome Education International since late 2009.

Christopher and Wendy have been walking to raise funds for the charity’s vital research, resources and services that are improving education for thousands of children with Down syndrome around the world.

Please show your appreciation for their fantastic efforts by donating to their walk online.

Down Syndrome Research Forum 2014

We are accepting submissions and booking is now open for the 2014 Down Syndrome Research Forum.

The Department of Psychology at Lancaster University is hosting the 2014 Down Syndrome Research Forum on 24 and 25 September in collaboration with Down Syndrome Education International. The Down Syndrome Research Forum provides an opportunity for researchers active in areas related to Down syndrome and those working with people with Down Syndrome to meet, share ideas, and discuss recent findings and implications for practice.

Find out more…

Terminations of babies with Down syndrome in England

Last weekend, the UK Sunday Times reported that many terminations of babies with Down syndrome are not being correctly recorded by the Department of Health. In many reports that have since appeared online it has been stated that in England 92% of babies with Down syndrome are terminated. This is incorrect.

You would think from some of the reports and comment that have appeared online in the past week that the births of virtually all babies with Down syndrome in England are prevented through prenatal screening and selective terminations. This is not the case:

It is true that 92% of diagnosed pregnancies are terminated. However, this is very different from 92% of all pregnancies. Many people choose not to screen. Many who are screened and receive a ‘high risk’ result choose not to have invasive diagnostic testing as it carries a risk of miscarriage. Some who are screened and do not receive a ‘high risk’ result will, in fact, go on to have a baby with Down syndrome.

Overall, the rate at which live births are reduced due to prenatal diagnosis and selective terminations in England and Wales in recent years was around 50%-55%.

UK Communication Trust lists RLI in What Works database

The Communication Trust – a coalition of nearly 50 voluntary and community organisations with expertise in speech, language and communication – has recently listed DSE’s new reading and language intervention in its What Works database of evidenced interventions.

RLI HandbookThe Communication Trust in the UK is a coalition of nearly 50 voluntary and community organisations. Working with the Better Communication Research Programme they have developed a database of evidenced interventions to support children’s speech, language and communication – the What Works database.

The Communication Trust’s What Works database includes over 60 interventions, assessed for inclusion in the database by independent experts. The What Works database is endorsed by the Royal College of Speech and Language Therapists. The entry for RLI in the What Works database (registration required) observes:

“A key feature of RLI is that it is designed to be suitable for children across a wide ability range and content is adapted for each individual child, with assessment and daily record keeping built into the delivery of the programme. The Language Strand can be used for children with language ages from 2 years and the Reading Strand for beginning readers to a word reading age of 8 years. The RCT data supports starting reading instruction for children with Down syndrome at 5 years of age as younger children in the study tended to make more progress…

“RLI has a moderate evidence level. Within the evidence there are examples of significantly positive outcomes for children with Down syndrome, all of whom have language difficulties, though children continue to need additional support.”

(By the criteria applied, a “strong” level of evidence would require multiple trials and a systematic review – we are going to have to wait a while for that!)

It is great to see RLI – and the evidence underpinning it – assessed, recognised and listed here to bring it to the attention of Speech and Language Therapists and schools looking for interventions and teaching approaches with good evidence supporting their use.

DSE’s reading and language intervention (RLI) was evaluated in a landmark randomised controlled trial involving 57 children with Down syndrome living in two areas of the UK. It is now being used in hundreds of schools throughout the UK and in the US to provide highly structured, individualised teaching for children with Down syndrome. DSE is continuing to develop support networks for the new intervention, including accredited trainers in both the UK and the US, and continuing to evaluate and develop the teaching programme.

UK Down syndrome research funding

In response to parliamentary question, the Department of Health has confirmed the (dire) current level of funding for research relating to Down syndrome.

In reply to a question tabled by Fiona Bruce MP, the Department of Health confirmed that current annual spending on Down syndrome research totals £1.76 million ($2.7 million):

“In 2012-13, the Department’s National Institute for Health Research (NIHR) spent £1.2 million on research relating to Down’s syndrome through research programmes and research training awards. Total spend by the NIHR on research relating to Down’s syndrome is higher than this because expenditure by the NIHR Clinical Research Network (CRN) on this topic cannot be disaggregated from total CRN expenditure.

“The Medical Research Council (MRC) is one of the main agencies through which the Government support medical and clinical research. It is an independent research funding body which receives its grant in aid from the Department for Business, Innovation and Skills. In 2012-13 the MRC spent £564,000 on research into Down’s syndrome.”

However, the NIHR funding is not directed towards improving the health and wellbeing of people living with Down syndrome – this is directed at a major project to “to improve the quality of NHS prenatal diagnostic services by evaluating early non-invasive prenatal diagnosis”. Most of MRC’s spending is on the study of a mouse bred to carry (much, but not all of) a human chromosome 21 in (many, but not all) of its cells. While of interest, this research offers no near-term improvements to health and medical care for people living with Down syndrome today. Yet there are many pressing clinical issues where more research could quite quickly improve the lives of people with Down syndrome – sleep, hearing and speech and language therapy to name just three.

This compares poorly with the $20 million spent annually by the US National Institutes of Health on Down syndrome research. The US figures do not include expenditure on research into prenatal testing. Therefore, compared on a population basis, the UK is spending around £14 ($22) on Down syndrome medical research per person with Down syndrome annually, whereas the US is spending around $80 per person (there are approximately 40,000 people with Down syndrome living in the UK and 250,000 living in the US).

Furthermore, the US government also funds research aiming to improve educational outcomes for children with Down syndrome, and the UK government currently funds none.

This is a sorry state of affairs that I hope the All Party Parliamentary Group on Down Syndrome will be tackling in the coming months.