Obstetricians' views on the ethics of cardiac surgery for newborns with common aneuploidies

Fruhman, Gary; Miller, Collin; Amon, Erol; Raible, Darbey; Bradshaw, Rachael; Martin, Kimberly

doi:10.1002/pd.5225

Cited by 11 publications

(14 citation statements)

References 25 publications

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“…Trisomy 18 is increasingly recognized as a heterogeneous condition (Janvier et al, ) and the same applies to those children with trisomy 18 receiving PPC services. Attitudes of providers toward the care of children with Trisomy 18 vary, likely related to the characteristics of the subpopulation of children for which they care (Fruhman et al, ; Hurley, Krishnan, Parton, & Dozor, ; Yates, Hoffman, Shepherd, Boettner, & McBride, ; Young, Simpson, & Warren, ). Although there have been no formal studies of attitudes of PPC providers, some have endorsed a patient‐centered and shared decision‐making model of care (Boss et al, ; Brosco & Feudtner, ).…”

Section: Discussionmentioning

confidence: 99%

Experiences of children with trisomy 18 referred to pediatric palliative care services on two continents

Mullin

Wolfe

Bluebond‐Langner

et al. 2019

American J of Med Genetics Pt A

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Children with trisomy 18 that survive beyond the neonatal period have multiple congenital anomalies, neurodevelopmental disability, and high mortality rates. The experience of children with trisomy 18 who receive pediatric palliative care services is largely unknown. We conducted a retrospective review of children with trisomy 18 receiving pediatric palliative care services at both Boston Children's Hospital, USA and Great Ormond Street Hospital, UK from January 1, 2004 to January 1, 2015. Fifty‐eight children with trisomy 18 were referred to pediatric palliative care, 38 in the United Kingdom, 20 in the United States. Median age at referral was 19 days (2–89) in the United Kingdom, and 25 days (1–463) in the United States. Median length of time being followed by pediatric palliative care was 32 days (1–1,637) in the United Kingdom and 67 days (3–2,442) in the United States. The only significant difference in the two cohorts (p = .001) was in likelihood of receiving cardiac surgical intervention—37% in the United States, 0% the United Kingdom. Children with trisomy 18 receive pediatric palliative care services, with variable age at referral and for a variable length of time. Further research is needed to understand the experience of children with trisomy 18 and their families receiving pediatric palliative care services.

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Section: Discussionmentioning

confidence: 99%

Experiences of children with trisomy 18 referred to pediatric palliative care services on two continents

Mullin

Wolfe

Bluebond‐Langner

et al. 2019

American J of Med Genetics Pt A

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“…Based on the literature, a first concept survey was developed. [2][3][4]15,18,27 This survey was reviewed by two pediatric neurosurgeons experienced in treating MMC as well as a maternal-fetal medicine specialist before being finalized. The survey consists of 17 questions and can be divided into three sections: 1) characteristics of the respondents, such as subspecialization, tenure, and country of employment; 2) the practice of counseling on and managing MMC, such as the items discussed during counseling of parents, number of MMC defects closed yearly, and the availability of prenatal surgery to treat MMC; and 3) barriers, facilitators, and expectations of fetal surgery for MMC.…”

Section: Methodsmentioning

confidence: 99%

Neurosurgeons’ opinions on the prenatal management of myelomeningocele

Gadjradj

Spoor

Eggink

et al. 2019

Neurosurgical Focus

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OBJECTIVEImprovements in imaging and surgical technological innovations have led to the increasing implementation of fetal surgical techniques. Open fetal surgery has demonstrated more favorable clinical outcomes in children born with open myelomeningocele (MMC) than those following postnatal repair. However, primarily because of maternal risks but also because of fetal risks, fetal surgery for MMC remains controversial. Here, the authors evaluated the contemporary management of MMC in the hope of identifying barriers and facilitators for neurosurgeons in providing fetal surgery for MMC.METHODSAn online survey was emailed to members of the Congress of Neurological Surgeons (CNS) and the International Society for Pediatric Neurosurgery (ISPN) in March 2019. The survey focused on 1) characteristics of the respondents, 2) the practice of counseling on and managing prenatally diagnosed MMC, and 3) barriers, facilitators, and expectations of fetal surgery for MMC. Reminders were sent to improve the response rate.RESULTSA total of 446 respondents filled out the survey, most (59.2%) of whom specialized in pediatric neurosurgery. The respondents repaired an average of 9.6 MMC defects per year, regardless of technique. Regardless of the departments in which respondents were employed, 91.0% provided postnatal repair of MMC, 13.0% open fetal repair, and 4.9% fetoscopic repair. According to the surgeons, the most important objections to performing open fetal surgery were a lack of cases available to become proficient in the technique (33.8%), the risk of maternal complications (23.6%), and concern for fetal complications (15.2%). The most important facilitators according to advocates of prenatal closure are a decreased rate of shunt dependency (37.8%), a decreased rate of hindbrain herniation (27.0%), and an improved rate of motor function (18.9%). Of the respondents, only 16.9% agreed that open fetal surgery should be the standard of care.CONCLUSIONSThe survey results showed diversity in the management of patients with MMC. In addition, significant diversity remains regarding fetal surgery for MMC closure. Despite the apparent benefits of open fetal surgery in selected pregnancies, only a minority of centers and providers offer this technique. As a more technically demanding technique that requires multidisciplinary effort with less well-established long-term outcomes, fetoscopic surgery may face similar limited implementation, although the surgery may pose fewer maternal risks than open fetal surgery. Centralization of prenatal treatment to tertiary care referral centers, as well as the use of sophisticated training models, may help to augment the most commonly cited objection to the implementation of prenatal closure, which is the overall limited caseload.

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“…In the article by Fruhman et al published in the February 2018 edition of Prenatal Diagnosis , obstetricians and registered geneticists in the US were surveyed regarding two questions. First, in your opinion, is cardiac surgery ethical for infants with trisomies 21, 18, 13, and Turner syndrome?…”

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confidence: 99%

“…The publication by Fruhman et al is an important one. It highlights the necessity of incorporating current data and multidisciplinary input into prenatal counseling.…”

mentioning

confidence: 99%

Comment on “Obstetricians' views on the ethics of cardiac surgery for newborns with common aneuploidies”

McCaffrey

2018

Prenatal Diagnosis

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Obstetricians' views on the ethics of cardiac surgery for newborns with common aneuploidies

Abstract: Obstetricians were more likely to think cardiac surgery was ethical if the prognosis or the outcome was good. Most respondents did not think that insurance companies should be required to subsidize the cost of cardiac surgeries for all babies with trisomy 18 or 13.

Cited by 11 publications

References 25 publications

Experiences of children with trisomy 18 referred to pediatric palliative care services on two continents

Experiences of children with trisomy 18 referred to pediatric palliative care services on two continents

Neurosurgeons’ opinions on the prenatal management of myelomeningocele

Comment on “Obstetricians' views on the ethics of cardiac surgery for newborns with common aneuploidies”

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