Establishing a fetal therapy center: lessons learned

Howell, Lori J.; Adzick, N. Scott

doi:10.1016/s1055-8586(03)00023-4

Cited by 12 publications

(12 citation statements)

References 19 publications

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“…The neonatal outcomes of pregnancies affected by prenatally diagnosed anomalies such as congenital diaphragmatic hernia, abdominal wall defects, and congenital heart disease are improved when these families are referred prenatally to specialized centers. These sites offer perinatal and neonatal care and the benefit of greater experience with rare conditions and improved coordination of care across multiple disciplines …”

Section: Introductionmentioning

confidence: 99%

“…These sites offer perinatal and neonatal care and the benefit of greater experience with rare conditions and improved coordination of care across multiple disciplines. 3,4 Families experiencing a pregnancy complicated by a fetal anomaly also face unique stresses. [5][6][7][8] During the pregnancy, they experience higher levels of psychological distress than do families experiencing normal pregnancies.…”

Section: Introductionmentioning

confidence: 99%

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A Model of Group Prenatal Care for Patients with Prenatally Diagnosed Fetal Anomalies

Schwarz

Froh

Farmer

et al. 2020

J Midwife Womens Health

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The model of group prenatal care was initially developed to include peer support and to improve education and health‐promoting behaviors during pregnancy. This model has since been adapted for populations with unique educational needs. Mama Care is an adaptation of the CenteringPregnancy Model of prenatal care. Mama Care is situated within a national and international referral center for families with prenatally diagnosed fetal anomalies. In December 2013, the Center for Fetal Diagnosis and Treatment at Children's Hospital of Philadelphia began offering a model of group prenatal care to women whose pregnancies are affected by a prenatal diagnosis of a fetal anomaly. The model incorporates significant adaptations of CenteringPregnancy in order to accommodate these women, who typically transition their care from community‐based settings to the Center for Fetal Diagnosis and Treatment in the late second or early third trimester. Unique challenges associated with caring for families within a referral center include a condensed visit schedule, complex social needs such as housing and psychosocial support, as well as an increased need for antenatal surveillance and frequent preterm birth. Outcomes of the program are favorable and suggest group prenatal care models can be developed to support the needs of patients with prenatally diagnosed fetal anomalies.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

A Model of Group Prenatal Care for Patients with Prenatally Diagnosed Fetal Anomalies

Schwarz

Froh

Farmer

et al. 2020

J Midwife Womens Health

View full text Add to dashboard Cite

show abstract

“…Results of the current survey suggest that the health professionals involved in the combined clinics rated most highly the provision of expert parental counselling with the most up‐to‐date information regarding the fetal anomaly and a long‐term prognosis . The educational value of the combined clinics was also recognised by the health professionals although this achieved the lowest ranking by comparison.…”

Section: Discussionmentioning

confidence: 83%

“…In recent years, it has been suggested that pregnant women identified as high risk should receive specialist condition‐specific care with more frequent prenatal visits . In having a single multidisciplinary team for high‐risk patients, fetal medicine specialists can bring their expertise to fetal ultrasound scanning and diagnosis, and paediatric specialists can provide expert counselling to parents regarding fetal anomalies, postnatal management, long‐term outcome and prognosis . Such a care model also has the potential to improve professional communications .…”

Section: Introductionmentioning

confidence: 99%

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Service users and care providers' experiences of tertiary combined fetal medicine clinics

et al. 2012

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A service model that combines fetal medicine and paediatric specialists in a single clinic can efficiently modify parental perspective on fetal anomalies and enhance professional communication and training. Condition-specific information leaflets could further enhance service quality. A larger study involving a socio-demographically stratified sample of service users is needed to provide more authoritative data.

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Precarious hope: Ethical considerations for offering experimental fetal therapies outside of research after initial studies in humans

Hendriks,

Althaus,

Atkinson

et al. 2023

Prenatal Diagnosis

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ObjectiveRisks and benefits of experimental fetal therapies can remain uncertain after initial clinical studies, especially long‐term effects. Nevertheless, pregnant individuals may request them, hoping to benefit their future child. Guidance about offering experimental fetal therapies outside research (as “innovative therapy”) is limited, despite their ethical complexity. We propose points for clinicians and reviewers to consider when deciding whether and how to offer experimental fetal therapies as innovative therapies after initial clinical studies.MethodWe used conceptual analysis and a current case to develop points for consideration, grounded in broader debates on innovative therapy and the unique challenges associated with experimental fetal therapies.ResultsClinicians should evaluate whether offering experimental fetal therapies as innovative therapy is appropriate for a pregnant individual and their fetus. The anticipated risk‐benefit ratio for the fetus should be favorable. For the pregnant individual, risks may outweigh benefits, within reasonable limits. Medical resources should be sufficient to ensure appropriate care. Clinicians should support pregnant individuals in making informed choices. Clinicians offering innovative therapies with more than minimal risk should collect and report data on outcomes. Independent review should take place.ConclusionConsidering these points may advance the interests of fetuses, future children, and their families.

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Establishing a fetal therapy center: lessons learned

Cited by 12 publications

References 19 publications

A Model of Group Prenatal Care for Patients with Prenatally Diagnosed Fetal Anomalies

A Model of Group Prenatal Care for Patients with Prenatally Diagnosed Fetal Anomalies

Service users and care providers' experiences of tertiary combined fetal medicine clinics

Precarious hope: Ethical considerations for offering experimental fetal therapies outside of research after initial studies in humans

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