Termination of pregnancy after a prenatal diagnosis of congenital diaphragmatic hernia: Factors influencing the parental decision process

Objective To evaluate the incidence of termination of pregnancies (TOP) and factors associated with the decision for TOP in prenatally detected congenital diaphragmatic hernia (CDH). Study Design Single‐centre retrospective cohort includes all prenatally detected CDH cases born between January 2009...

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Veröffentlicht in:Prenatal diagnosis 2023-01, Vol.43 (1), p.95-101
Hauptverfasser: Horn‐Oudshoorn, Emily J. J., Peters, Nina C. J., Franx, Arie, Eggink, Alex J., Cochius‐den Otter, Suzan C. M., Reiss, Irwin K. M., DeKoninck, Philip L. J.
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container_issue 1
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container_title Prenatal diagnosis
container_volume 43
creator Horn‐Oudshoorn, Emily J. J.
Peters, Nina C. J.
Franx, Arie
Eggink, Alex J.
Cochius‐den Otter, Suzan C. M.
Reiss, Irwin K. M.
DeKoninck, Philip L. J.
description Objective To evaluate the incidence of termination of pregnancies (TOP) and factors associated with the decision for TOP in prenatally detected congenital diaphragmatic hernia (CDH). Study Design Single‐centre retrospective cohort includes all prenatally detected CDH cases born between January 2009 and December 2021. Parental factors, such as parity, and fetal characteristics, such as disease severity, were collected. Descriptive statistics were used to present the data. Differences between terminated and continued pregnancies were analysed. Results The study population consisted of 278 prenatally detected CDH cases of which 80% detected
doi_str_mv 10.1002/pd.6274
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J. ; Peters, Nina C. J. ; Franx, Arie ; Eggink, Alex J. ; Cochius‐den Otter, Suzan C. M. ; Reiss, Irwin K. M. ; DeKoninck, Philip L. J.</creator><creatorcontrib>Horn‐Oudshoorn, Emily J. J. ; Peters, Nina C. J. ; Franx, Arie ; Eggink, Alex J. ; Cochius‐den Otter, Suzan C. M. ; Reiss, Irwin K. M. ; DeKoninck, Philip L. J.</creatorcontrib><description>Objective To evaluate the incidence of termination of pregnancies (TOP) and factors associated with the decision for TOP in prenatally detected congenital diaphragmatic hernia (CDH). Study Design Single‐centre retrospective cohort includes all prenatally detected CDH cases born between January 2009 and December 2021. Parental factors, such as parity, and fetal characteristics, such as disease severity, were collected. Descriptive statistics were used to present the data. Differences between terminated and continued pregnancies were analysed. Results The study population consisted of 278 prenatally detected CDH cases of which 80% detected &lt;24 weeks of gestation. The TOP rate was 28% in cases that were detected &lt;24 weeks of gestation. Twenty continued pregnancies resulted in either intrauterine fetal demise (n = 6), preterm birth &lt;24 weeks (n = 2), or comfort care after birth (n = 12). The survival rate was 70% in the remaining 195 live born cases. Factors associated with the decision for TOP were additional fetal genetic or anatomical abnormalities (p &lt; 0.0001) and expected severity of pulmonary hypoplasia in left‐sided CDH (p = 0.0456). Conclusion The decision to terminate a pregnancy complicated by fetal CDH depends on the severity of pulmonary hypoplasia and the presence of additional abnormalities. This emphasises the importance of early referral to expertise centres for detailed evaluation and multidisciplinary counselling. Key points What is already known about this topic? What does this study add? Implementation of routine structural ultrasound evaluations has increased prenatal detection of congenital birth defects, providing parents the option to reflect about termination of pregnancy (TOP). The incidence of TOP in case of fetal congenital diaphragmatic hernia varies between 6% and 100% in historical cohorts; in our cohort spanning over a decade, this was 28%. The parental decision on discontinuing the pregnancy was associated with a higher estimated disease severity, but not with parent‐specific factors.</description><identifier>ISSN: 0197-3851</identifier><identifier>EISSN: 1097-0223</identifier><identifier>DOI: 10.1002/pd.6274</identifier><identifier>PMID: 36443507</identifier><language>eng</language><publisher>England: John Wiley and Sons Inc</publisher><subject>Female ; Hernias, Diaphragmatic, Congenital - complications ; Hernias, Diaphragmatic, Congenital - diagnostic imaging ; Humans ; Infant, Newborn ; Original ; Pregnancy ; Premature Birth ; Prenatal Care ; Prenatal Diagnosis ; Retrospective Studies ; Ultrasonography, Prenatal - methods</subject><ispartof>Prenatal diagnosis, 2023-01, Vol.43 (1), p.95-101</ispartof><rights>2022 The Authors. Prenatal Diagnosis published by John Wiley &amp; Sons Ltd.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4064-2d595a234c985261abe4a366550f0ce05ec943d4edf1bbda64c8d5d85982b5eb3</citedby><cites>FETCH-LOGICAL-c4064-2d595a234c985261abe4a366550f0ce05ec943d4edf1bbda64c8d5d85982b5eb3</cites><orcidid>0000-0002-4457-0940 ; 0000-0002-0582-1129 ; 0000-0003-2427-7269</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1002%2Fpd.6274$$EPDF$$P50$$Gwiley$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1002%2Fpd.6274$$EHTML$$P50$$Gwiley$$Hfree_for_read</linktohtml><link.rule.ids>230,314,780,784,885,1417,27924,27925,45574,45575</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/36443507$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Horn‐Oudshoorn, Emily J. J.</creatorcontrib><creatorcontrib>Peters, Nina C. J.</creatorcontrib><creatorcontrib>Franx, Arie</creatorcontrib><creatorcontrib>Eggink, Alex J.</creatorcontrib><creatorcontrib>Cochius‐den Otter, Suzan C. M.</creatorcontrib><creatorcontrib>Reiss, Irwin K. M.</creatorcontrib><creatorcontrib>DeKoninck, Philip L. J.</creatorcontrib><title>Termination of pregnancy after a prenatal diagnosis of congenital diaphragmatic hernia: Factors influencing the parental decision process</title><title>Prenatal diagnosis</title><addtitle>Prenat Diagn</addtitle><description>Objective To evaluate the incidence of termination of pregnancies (TOP) and factors associated with the decision for TOP in prenatally detected congenital diaphragmatic hernia (CDH). Study Design Single‐centre retrospective cohort includes all prenatally detected CDH cases born between January 2009 and December 2021. Parental factors, such as parity, and fetal characteristics, such as disease severity, were collected. Descriptive statistics were used to present the data. Differences between terminated and continued pregnancies were analysed. Results The study population consisted of 278 prenatally detected CDH cases of which 80% detected &lt;24 weeks of gestation. The TOP rate was 28% in cases that were detected &lt;24 weeks of gestation. Twenty continued pregnancies resulted in either intrauterine fetal demise (n = 6), preterm birth &lt;24 weeks (n = 2), or comfort care after birth (n = 12). The survival rate was 70% in the remaining 195 live born cases. Factors associated with the decision for TOP were additional fetal genetic or anatomical abnormalities (p &lt; 0.0001) and expected severity of pulmonary hypoplasia in left‐sided CDH (p = 0.0456). Conclusion The decision to terminate a pregnancy complicated by fetal CDH depends on the severity of pulmonary hypoplasia and the presence of additional abnormalities. This emphasises the importance of early referral to expertise centres for detailed evaluation and multidisciplinary counselling. Key points What is already known about this topic? What does this study add? Implementation of routine structural ultrasound evaluations has increased prenatal detection of congenital birth defects, providing parents the option to reflect about termination of pregnancy (TOP). The incidence of TOP in case of fetal congenital diaphragmatic hernia varies between 6% and 100% in historical cohorts; in our cohort spanning over a decade, this was 28%. The parental decision on discontinuing the pregnancy was associated with a higher estimated disease severity, but not with parent‐specific factors.</description><subject>Female</subject><subject>Hernias, Diaphragmatic, Congenital - complications</subject><subject>Hernias, Diaphragmatic, Congenital - diagnostic imaging</subject><subject>Humans</subject><subject>Infant, Newborn</subject><subject>Original</subject><subject>Pregnancy</subject><subject>Premature Birth</subject><subject>Prenatal Care</subject><subject>Prenatal Diagnosis</subject><subject>Retrospective Studies</subject><subject>Ultrasonography, Prenatal - methods</subject><issn>0197-3851</issn><issn>1097-0223</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2023</creationdate><recordtype>article</recordtype><sourceid>24P</sourceid><sourceid>WIN</sourceid><sourceid>EIF</sourceid><recordid>eNp1kcFu1DAQhi0EoktBvAHyDSS0xXZsJ-GCUKGAVAkO5WxN7EnWKLGDnQXtI_DWON2lggMnj2Y-fzPST8hTzi44Y-LV7C60qOU9suGsrbdMiOo-2TBe6qpR_Iw8yvlbARvR1g_JWaWlrBSrN-TXDabJB1h8DDT2dE44BAj2QKFfMFFYO2UMI3UehhCzzytnYxgw-FN_3iUYpiKxdIcpeHhNr8AuMWXqQz_uMVgfBrrskM5QfLff0Pq8bp1TtJjzY_KghzHjk9N7Tr5evb-5_Li9_vzh0-Xb662VTMutcKpVICpp20YJzaFDCZXWSrGeWWQKbSsrJ9H1vOscaGkbp1yj2kZ0CrvqnLw5eud9N6Gz5ZoEo5mTnyAdTARv_p0EvzND_GE446zWXBbDi5Mhxe97zIuZfLY4jhAw7rMpQQitaqV5QZ8fUZtizgn7uz2cmTU5MzuzJlfIZ3-fdcf9iaoAL4_ATz_i4X8e8-Xdre43wUOlkQ</recordid><startdate>202301</startdate><enddate>202301</enddate><creator>Horn‐Oudshoorn, Emily J. J.</creator><creator>Peters, Nina C. J.</creator><creator>Franx, Arie</creator><creator>Eggink, Alex J.</creator><creator>Cochius‐den Otter, Suzan C. M.</creator><creator>Reiss, Irwin K. M.</creator><creator>DeKoninck, Philip L. J.</creator><general>John Wiley and Sons Inc</general><scope>24P</scope><scope>WIN</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0002-4457-0940</orcidid><orcidid>https://orcid.org/0000-0002-0582-1129</orcidid><orcidid>https://orcid.org/0000-0003-2427-7269</orcidid></search><sort><creationdate>202301</creationdate><title>Termination of pregnancy after a prenatal diagnosis of congenital diaphragmatic hernia: Factors influencing the parental decision process</title><author>Horn‐Oudshoorn, Emily J. J. ; Peters, Nina C. J. ; Franx, Arie ; Eggink, Alex J. ; Cochius‐den Otter, Suzan C. M. ; Reiss, Irwin K. M. ; DeKoninck, Philip L. J.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4064-2d595a234c985261abe4a366550f0ce05ec943d4edf1bbda64c8d5d85982b5eb3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2023</creationdate><topic>Female</topic><topic>Hernias, Diaphragmatic, Congenital - complications</topic><topic>Hernias, Diaphragmatic, Congenital - diagnostic imaging</topic><topic>Humans</topic><topic>Infant, Newborn</topic><topic>Original</topic><topic>Pregnancy</topic><topic>Premature Birth</topic><topic>Prenatal Care</topic><topic>Prenatal Diagnosis</topic><topic>Retrospective Studies</topic><topic>Ultrasonography, Prenatal - methods</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Horn‐Oudshoorn, Emily J. J.</creatorcontrib><creatorcontrib>Peters, Nina C. J.</creatorcontrib><creatorcontrib>Franx, Arie</creatorcontrib><creatorcontrib>Eggink, Alex J.</creatorcontrib><creatorcontrib>Cochius‐den Otter, Suzan C. M.</creatorcontrib><creatorcontrib>Reiss, Irwin K. M.</creatorcontrib><creatorcontrib>DeKoninck, Philip L. J.</creatorcontrib><collection>Wiley Online Library (Open Access Collection)</collection><collection>Wiley Online Library (Open Access Collection)</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Prenatal diagnosis</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Horn‐Oudshoorn, Emily J. J.</au><au>Peters, Nina C. J.</au><au>Franx, Arie</au><au>Eggink, Alex J.</au><au>Cochius‐den Otter, Suzan C. M.</au><au>Reiss, Irwin K. M.</au><au>DeKoninck, Philip L. J.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Termination of pregnancy after a prenatal diagnosis of congenital diaphragmatic hernia: Factors influencing the parental decision process</atitle><jtitle>Prenatal diagnosis</jtitle><addtitle>Prenat Diagn</addtitle><date>2023-01</date><risdate>2023</risdate><volume>43</volume><issue>1</issue><spage>95</spage><epage>101</epage><pages>95-101</pages><issn>0197-3851</issn><eissn>1097-0223</eissn><abstract>Objective To evaluate the incidence of termination of pregnancies (TOP) and factors associated with the decision for TOP in prenatally detected congenital diaphragmatic hernia (CDH). Study Design Single‐centre retrospective cohort includes all prenatally detected CDH cases born between January 2009 and December 2021. Parental factors, such as parity, and fetal characteristics, such as disease severity, were collected. Descriptive statistics were used to present the data. Differences between terminated and continued pregnancies were analysed. Results The study population consisted of 278 prenatally detected CDH cases of which 80% detected &lt;24 weeks of gestation. The TOP rate was 28% in cases that were detected &lt;24 weeks of gestation. Twenty continued pregnancies resulted in either intrauterine fetal demise (n = 6), preterm birth &lt;24 weeks (n = 2), or comfort care after birth (n = 12). The survival rate was 70% in the remaining 195 live born cases. Factors associated with the decision for TOP were additional fetal genetic or anatomical abnormalities (p &lt; 0.0001) and expected severity of pulmonary hypoplasia in left‐sided CDH (p = 0.0456). Conclusion The decision to terminate a pregnancy complicated by fetal CDH depends on the severity of pulmonary hypoplasia and the presence of additional abnormalities. This emphasises the importance of early referral to expertise centres for detailed evaluation and multidisciplinary counselling. Key points What is already known about this topic? What does this study add? Implementation of routine structural ultrasound evaluations has increased prenatal detection of congenital birth defects, providing parents the option to reflect about termination of pregnancy (TOP). The incidence of TOP in case of fetal congenital diaphragmatic hernia varies between 6% and 100% in historical cohorts; in our cohort spanning over a decade, this was 28%. The parental decision on discontinuing the pregnancy was associated with a higher estimated disease severity, but not with parent‐specific factors.</abstract><cop>England</cop><pub>John Wiley and Sons Inc</pub><pmid>36443507</pmid><doi>10.1002/pd.6274</doi><tpages>7</tpages><orcidid>https://orcid.org/0000-0002-4457-0940</orcidid><orcidid>https://orcid.org/0000-0002-0582-1129</orcidid><orcidid>https://orcid.org/0000-0003-2427-7269</orcidid><oa>free_for_read</oa></addata></record>
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subjects Female
Hernias, Diaphragmatic, Congenital - complications
Hernias, Diaphragmatic, Congenital - diagnostic imaging
Humans
Infant, Newborn
Original
Pregnancy
Premature Birth
Prenatal Care
Prenatal Diagnosis
Retrospective Studies
Ultrasonography, Prenatal - methods
title Termination of pregnancy after a prenatal diagnosis of congenital diaphragmatic hernia: Factors influencing the parental decision process
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