Estimates of live birth prevalence of children with Down syndrome in the period 1991-2015 in the Netherlands

G. de Graaf; J. J. M. Engelen; A. C. J. Gijsbers; R. Hochstenbach; M. J. V. Hoffer; A. J. A. Kooper; B. Sikkema-Raddatz; M. I. Srebniak; A. M. F. van der Kevie-Kersemaekers; L. J. C. M. van Zutven; E. Voorhoeve

doi:10.1111/jir.12371

Estimates of live birth prevalence of children with Down syndrome in the period 1991-2015 in the Netherlands

G. de Graaf^*, J. J. M. Engelen, A. C. J. Gijsbers, R. Hochstenbach, M. J. V. Hoffer, A. J. A. Kooper, B. Sikkema-Raddatz, M. I. Srebniak, A. M. F. van der Kevie-Kersemaekers, L. J. C. M. van Zutven, E. Voorhoeve

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

Abstract

Background In Western countries, increasing maternal age has led to more pregnancies with a child with Down syndrome (DS). However, prenatal screening programs, diagnostic testing and termination of pregnancy influence the actual DS live birth (LB) prevalence as well. The aim of this study is to examine these factors in the Netherlands for the period 1991-2015. In our study, we establish a baseline for DS LB prevalence before non-invasive prenatal testing will be made available to all pregnant women in the Netherlands in 2017.

Methods Full nationwide data from the Dutch cytogenetic laboratories were used to evaluate the actual DS LB prevalence. In addition, nonselective DS prevalence, which is the DS LB prevalence that would be expected in absence of termination of pregnancies, was estimated on the basis of maternal age distribution in the general population.

Results Because of an increase in maternal age, nonselective DS prevalence increased from around 15.6 [95% confidence interval (CI) 13.9-17.4] per 10000 LBs in 1991 (311 children in total) to around 22.6 (95% CI 20.3-24.9) per 10000 in 2015 (385), the increase levelling off in recent years. Actual LB prevalence rose from around 11.6 (95% CI 10.9-12.2) per 10000 in 1991 (230 children) to an estimated peak of 15.9 (95% CI 15.6-16.2) per 10000 in 2002 (322), gradually decreasing since to 11.1 (95% CI 10.8-11.5) per 10000 in 2015 (190). Reduction of DS LBs resulting from elective terminations had been fairly constant between 1995 and 2002 at around 28% and rose afterwards from 35% in 2003 to around 50% in 2015.

Conclusions In spite of expansion of antenatal screening in the Netherlands in the 1990s and early 2000s, actual DS LB prevalence increased during this period. However, after 2002, this trend reversed, probably because of informing all pregnant women about prenatal testing since 2004 and the implementation of a national screening program in 2007.

Original language	English
Pages (from-to)	461-470
Number of pages	10
Journal	Journal of Intellectual Disability Research
Volume	61
Issue number	5
DOIs	https://doi.org/10.1111/jir.12371
Publication status	Published - May 2017

Keywords

birth prevalence
Down syndrome
epidemiology
first trimester prenatal screening
maternal age
NIPT
ENGLAND
REASONS

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10.1111/jir.12371

Cite this

de Graaf, G., Engelen, J. J. M., Gijsbers, A. C. J., Hochstenbach, R., Hoffer, M. J. V., Kooper, A. J. A., Sikkema-Raddatz, B., Srebniak, M. I., van der Kevie-Kersemaekers, A. M. F., van Zutven, L. J. C. M., & Voorhoeve, E. (2017). Estimates of live birth prevalence of children with Down syndrome in the period 1991-2015 in the Netherlands. Journal of Intellectual Disability Research, 61(5), 461-470. https://doi.org/10.1111/jir.12371

@article{6e6016123b99443281b73555f40ef7f0,

title = "Estimates of live birth prevalence of children with Down syndrome in the period 1991-2015 in the Netherlands",

abstract = "Background In Western countries, increasing maternal age has led to more pregnancies with a child with Down syndrome (DS). However, prenatal screening programs, diagnostic testing and termination of pregnancy influence the actual DS live birth (LB) prevalence as well. The aim of this study is to examine these factors in the Netherlands for the period 1991-2015. In our study, we establish a baseline for DS LB prevalence before non-invasive prenatal testing will be made available to all pregnant women in the Netherlands in 2017.Methods Full nationwide data from the Dutch cytogenetic laboratories were used to evaluate the actual DS LB prevalence. In addition, nonselective DS prevalence, which is the DS LB prevalence that would be expected in absence of termination of pregnancies, was estimated on the basis of maternal age distribution in the general population.Results Because of an increase in maternal age, nonselective DS prevalence increased from around 15.6 [95% confidence interval (CI) 13.9-17.4] per 10000 LBs in 1991 (311 children in total) to around 22.6 (95% CI 20.3-24.9) per 10000 in 2015 (385), the increase levelling off in recent years. Actual LB prevalence rose from around 11.6 (95% CI 10.9-12.2) per 10000 in 1991 (230 children) to an estimated peak of 15.9 (95% CI 15.6-16.2) per 10000 in 2002 (322), gradually decreasing since to 11.1 (95% CI 10.8-11.5) per 10000 in 2015 (190). Reduction of DS LBs resulting from elective terminations had been fairly constant between 1995 and 2002 at around 28% and rose afterwards from 35% in 2003 to around 50% in 2015.Conclusions In spite of expansion of antenatal screening in the Netherlands in the 1990s and early 2000s, actual DS LB prevalence increased during this period. However, after 2002, this trend reversed, probably because of informing all pregnant women about prenatal testing since 2004 and the implementation of a national screening program in 2007.",

keywords = "birth prevalence, Down syndrome, epidemiology, first trimester prenatal screening, maternal age, NIPT, ENGLAND, REASONS",

author = "{de Graaf}, G. and Engelen, {J. J. M.} and Gijsbers, {A. C. J.} and R. Hochstenbach and Hoffer, {M. J. V.} and Kooper, {A. J. A.} and B. Sikkema-Raddatz and Srebniak, {M. I.} and {van der Kevie-Kersemaekers}, {A. M. F.} and {van Zutven}, {L. J. C. M.} and E. Voorhoeve",

year = "2017",

month = may,

doi = "10.1111/jir.12371",

language = "English",

volume = "61",

pages = "461--470",

journal = "Journal of Intellectual Disability Research",

issn = "0964-2633",

publisher = "Wiley",

number = "5",

}

de Graaf, G, Engelen, JJM, Gijsbers, ACJ, Hochstenbach, R, Hoffer, MJV, Kooper, AJA, Sikkema-Raddatz, B, Srebniak, MI, van der Kevie-Kersemaekers, AMF, van Zutven, LJCM & Voorhoeve, E 2017, 'Estimates of live birth prevalence of children with Down syndrome in the period 1991-2015 in the Netherlands', Journal of Intellectual Disability Research, vol. 61, no. 5, pp. 461-470. https://doi.org/10.1111/jir.12371

TY - JOUR

T1 - Estimates of live birth prevalence of children with Down syndrome in the period 1991-2015 in the Netherlands

AU - de Graaf, G.

AU - Engelen, J. J. M.

AU - Gijsbers, A. C. J.

AU - Hochstenbach, R.

AU - Hoffer, M. J. V.

AU - Kooper, A. J. A.

AU - Sikkema-Raddatz, B.

AU - Srebniak, M. I.

AU - van der Kevie-Kersemaekers, A. M. F.

AU - van Zutven, L. J. C. M.

AU - Voorhoeve, E.

PY - 2017/5

Y1 - 2017/5

N2 - Background In Western countries, increasing maternal age has led to more pregnancies with a child with Down syndrome (DS). However, prenatal screening programs, diagnostic testing and termination of pregnancy influence the actual DS live birth (LB) prevalence as well. The aim of this study is to examine these factors in the Netherlands for the period 1991-2015. In our study, we establish a baseline for DS LB prevalence before non-invasive prenatal testing will be made available to all pregnant women in the Netherlands in 2017.Methods Full nationwide data from the Dutch cytogenetic laboratories were used to evaluate the actual DS LB prevalence. In addition, nonselective DS prevalence, which is the DS LB prevalence that would be expected in absence of termination of pregnancies, was estimated on the basis of maternal age distribution in the general population.Results Because of an increase in maternal age, nonselective DS prevalence increased from around 15.6 [95% confidence interval (CI) 13.9-17.4] per 10000 LBs in 1991 (311 children in total) to around 22.6 (95% CI 20.3-24.9) per 10000 in 2015 (385), the increase levelling off in recent years. Actual LB prevalence rose from around 11.6 (95% CI 10.9-12.2) per 10000 in 1991 (230 children) to an estimated peak of 15.9 (95% CI 15.6-16.2) per 10000 in 2002 (322), gradually decreasing since to 11.1 (95% CI 10.8-11.5) per 10000 in 2015 (190). Reduction of DS LBs resulting from elective terminations had been fairly constant between 1995 and 2002 at around 28% and rose afterwards from 35% in 2003 to around 50% in 2015.Conclusions In spite of expansion of antenatal screening in the Netherlands in the 1990s and early 2000s, actual DS LB prevalence increased during this period. However, after 2002, this trend reversed, probably because of informing all pregnant women about prenatal testing since 2004 and the implementation of a national screening program in 2007.

AB - Background In Western countries, increasing maternal age has led to more pregnancies with a child with Down syndrome (DS). However, prenatal screening programs, diagnostic testing and termination of pregnancy influence the actual DS live birth (LB) prevalence as well. The aim of this study is to examine these factors in the Netherlands for the period 1991-2015. In our study, we establish a baseline for DS LB prevalence before non-invasive prenatal testing will be made available to all pregnant women in the Netherlands in 2017.Methods Full nationwide data from the Dutch cytogenetic laboratories were used to evaluate the actual DS LB prevalence. In addition, nonselective DS prevalence, which is the DS LB prevalence that would be expected in absence of termination of pregnancies, was estimated on the basis of maternal age distribution in the general population.Results Because of an increase in maternal age, nonselective DS prevalence increased from around 15.6 [95% confidence interval (CI) 13.9-17.4] per 10000 LBs in 1991 (311 children in total) to around 22.6 (95% CI 20.3-24.9) per 10000 in 2015 (385), the increase levelling off in recent years. Actual LB prevalence rose from around 11.6 (95% CI 10.9-12.2) per 10000 in 1991 (230 children) to an estimated peak of 15.9 (95% CI 15.6-16.2) per 10000 in 2002 (322), gradually decreasing since to 11.1 (95% CI 10.8-11.5) per 10000 in 2015 (190). Reduction of DS LBs resulting from elective terminations had been fairly constant between 1995 and 2002 at around 28% and rose afterwards from 35% in 2003 to around 50% in 2015.Conclusions In spite of expansion of antenatal screening in the Netherlands in the 1990s and early 2000s, actual DS LB prevalence increased during this period. However, after 2002, this trend reversed, probably because of informing all pregnant women about prenatal testing since 2004 and the implementation of a national screening program in 2007.

KW - birth prevalence

KW - Down syndrome

KW - epidemiology

KW - first trimester prenatal screening

KW - maternal age

KW - NIPT

KW - ENGLAND

KW - REASONS

U2 - 10.1111/jir.12371

DO - 10.1111/jir.12371

M3 - Article

C2 - 28261902

SN - 0964-2633

VL - 61

SP - 461

EP - 470

JO - Journal of Intellectual Disability Research

JF - Journal of Intellectual Disability Research

IS - 5

ER -