Determinants of parental decisions after the prenatal diagnosis of Down syndrome

Kramer, Ralph L.; Jarve, Robert K.; Yaron, Yuval; Johnson, Mark P.; Lampinen, Jenifer; Kasperski, Stefanie; Evans, Mark I.

doi:10.1002/(sici)1096-8628(19980923)79:3<172::aid-ajmg4>3.0.co;2-p

Cited by 44 publications

(29 citation statements)

References 6 publications

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“…However, studies of elective termination do not suggest that nonwhites are more likely to terminate in response to prenatal diagnosis of other conditions such as Down syndrome. 12 Furthermore, given the well documented higher rate of prenatal care among whites, this would seem to be an unlikely explanation. 13 It is unclear whether such differential termination may underlie the varying incidence by geographic region.…”

Section: Discussionmentioning

confidence: 99%

Contemporary Epidemiology of Bladder Exstrophy in the United States

2005

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Section: Discussionmentioning

confidence: 99%

Contemporary Epidemiology of Bladder Exstrophy in the United States

2005

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“…In the end, in cases of prenatally diagnosed fetal anomalies, most pregnancies are terminated [1,2].…”

Section: Introductionmentioning

confidence: 99%

Trauma and grief 2–7 years after termination of pregnancy because of fetal anomalies – a pilot study

Kersting

Dorsch

Kreulich

et al. 2005

Journal of Psychosomatic Obstetrics & Gynecology

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The aim of the study was to obtain information on the long-term posttraumatic stress response and grief several years after termination of pregnancy due to fetal malformation. We investigated 83 women who had undergone termination of pregnancy between 1995 and 1999 and compared them with 60 women 14 days after termination of pregnancy and 65 women after the spontaneous delivery of a full-term healthy child. Women 2-7 years after termination of pregnancy were expected to show a significantly lower degree of traumatic experience and grief than women 14 days after termination of pregnancy. Contrary to the hypothesis, however, the results showed no significant intergroup differences with respect to the degree of traumatic experience. With the exception of one subscale (fear of loss), this also applied to the grief reported by the women. However, both groups differed significantly in their posttraumatic stress response from women who had given spontaneous birth to a full-term healthy child. The results indicate that termination of pregnancy is to be seen as an emotionally traumatic major life event which leads to severe posttraumatic stress response and intense grief reactions that are still detectable some years later.

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“…[29][30][31][32] A recent review of population-based studies of pregnancies with a positive prenatal diagnosis of DS estimated that 67% of pregnancies were terminated, but a temporal analysis found that the proportion of electively terminated pregnancies has consistently decreased in recent years. 33 Although information on frequency of termination is scarce and difficult to interpret, 34,35 evidence suggests that elective terminations might have a significant impact on the epidemiology of live born infants with DS. 36,37 If the presence of severe comorbid conditions such as major CHD factor into the decision to terminate, the observed decreasing trends in the decision to terminate a pregnancy with a positive diagnosis of DS could be the result of more fetuses with less complicated health profiles being carried to term.…”

Section: Discussionmentioning

confidence: 99%

Trends in Survival Among Children With Down Syndrome in 10 Regions of the United States

2012

PEDIATRICS

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OBJECTIVE-This study examined changes in survival among children with Down syndrome (DS) by race/ethnicity in 10 regions of the United States. A retrospective cohort study was conducted on 16 506 infants with DS delivered during 1983-2003 and identified by 10 US birth defects monitoring programs. Kaplan-Meier survival probabilities were estimated by select demographic and clinical characteristics. Adjusted hazard ratios (aHR) were estimated for maternal and infant characteristics by using Cox proportional hazard models. RESULTS-The overall 1-month and 1-, 5-, and 20-year survival probabilities were 98%, 93%, 91%, and 88%, respectively. Over the study period, neonatal survival did not improve appreciably, but survival at all other ages improved modestly. Infants of very low birth weight had 24 times the Address correspondence to James E. Kucik, MPH, Centers for Disease Control and Prevention, 1600 Clifton Rd, MS E-86, Atlanta, GA 30333. jkucik@cdc.gov. FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.Mr Kucik conceptualized and designed the study, carried out the analyses, drafted the initial manuscript, and approved the final manuscript as submitted; Dr Shin conceptualized and designed the study, carried out the initial analyses, contributed to the initial draft of the initial manuscript, and approved the final manuscript as submitted; Dr Siffel conceptualized and designed the study, carried out the initial analyses, reviewed and revised the manuscript, and approved the final manuscript as submitted; Ms Marengo coordinated data submission from 1 of the study sites, contributed to the initial draft of the initial manuscript, reviewed and revised the manuscript, and approved the final manuscript as submitted; and Dr Correa conceptualized and designed the study, reviewed and revised the manuscript, and approved the final manuscript as submitted.This work was presented in part at the annual meeting of the National Birth Defects Prevention Network; February 11-13, 2008; Washington, DC; and at the annual meeting of the 21st Society for Pediatric and Perinatal Epidemiologic Research; June 23-24, 2008; Chicago, IL.The findings and conclusions in this report are those of the author(s) and do not necessarily represent the official position of the Centers for Disease Control and Prevention. FUNDING:No external funds were used for this study, and there were no financial conflicts of interest among Centers for Disease Control and Prevention staff. . Presence of a heart defect increased the risk of death in the post-neonatal period nearly fivefold (aHR 4.6; 95% CI 3.9-5.4) and continued to be one of the most significant predictors of mortality through to age 20. The postneonatal aHR among nonHispanic blacks was 1.4 (95% CI 1.2-1.8) compared with non-Hispanic whites and remained elevated by age 10 (2.0; 95% CI 1.0-4.0). HHS Public Access CONCLUSIONS-The survival of children born with DS has improved and racial disparities in infant survival have ...

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Determinants of parental decisions after the prenatal diagnosis of Down syndrome

Cited by 44 publications

References 6 publications

Contemporary Epidemiology of Bladder Exstrophy in the United States

Contemporary Epidemiology of Bladder Exstrophy in the United States

Trauma and grief 2–7 years after termination of pregnancy because of fetal anomalies – a pilot study

Trends in Survival Among Children With Down Syndrome in 10 Regions of the United States

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