Table 1 Previous cohort studies of perinatal palliative care. Studies identified through a literature search across two databases (PubMed and CINAHL) using key words in the Title or Abstract
Authors | Year | Location | Study design | Number of cases | Cohort examined | Study period | 2 most common diagnoses | Liveborn rate |
|---|---|---|---|---|---|---|---|---|
Calhoun et al. | 2003 | Tacoma, Washington, USA | Descriptive study | 33 | Patients carrying a fetus with a clearly delineated lethal anomaly | Unspecified | Trisomy, Renal tract abnormality | 61% |
D’Almeida et al | 2006 | Illinois, USA | Descriptive study | 28 | Patients with a clearly defined lethal fetal anomaly eligible for perinatal hospice | 3 years 6 months | Anencephaly, Trisomy | 76% |
Breeze et al. | 2007 | Cambridge, UK | Single centre prospective cohort | 20 | All pregnancies diagnosed with a lethal abnormality | 4 years | Renal tract abnormality, Trisomy | 30% |
Marc-Aurele et al. | 2013 | San Diego, California, USA | Exploratory retrospective electronic chart review | 66 | All patients referred to a home perinatal palliative program | 5 years 10 months | Trisomy, Anencephaly | 62% |
Bétrémieux et al | 2016 | Rennes, France | Retrospective study | 20 | Pregnancies with diagnosis of lethal fetal condition where parents accepted antenatally the proposal or sought for palliative care at birth | 6 years | Congenital heart disease, CNS abnormality | 95% |
Kukora et al | 2017 | Ann Arbor, Michigan, USA | Single centre retrospective cohort | 144 | Patients referred for outpatient antenatal counselling by a neonatologist | 2 years 6 months | Chromosomal (including Trisomy), Multiple anomalies | 79% |
Hostalery et al. | 2017 | Marseilles, France | Single centre retrospective cohort | 39 | A series of pregnancies with severe fetal abnormalities | 10 years | Organ malformation only, Other pathology | 64% |
Bourdens et al. | 2017 | Southern France | Multi-centre retrospective cohort | 155 | Patients continuing pregnancies with a fetal pathology qualifying for a termination of pregnancy | 9 years | Single organ malformation, Other pathology | 79% |
Marc-Aurele et al. | 2018 | San Diego, California, USA | Single centre retrospective cohort | 332 | Women diagnosed prenatally with a potentially life-limiting fetal diagnosis | 6 years | Genetic defect, Trisomy | 23% |
Pfeifer et al | 2018 | Zurich, Switzerland | Single centre retrospective cohort | 30 | Patients prenatally assigned to palliative care | 6 years | CNS abnormality, Chromosomal aberration | 47% |
McMahon et al | 2018 | Dublin, Ireland | Single centre retrospective cohort | 83 | Perinatal patients (antenatal and 6 weeks postnatal) referred to a specialist palliative care service | 4 years | Trisomy, Congenital heart disease | 55% |
Kamrath et al. | 2019 | Minnesota, USA | Single centre retrospective cohort | 27 | Mother-infant pairs offered perinatal palliative care | 3 years 9 months | Chromosomal abnormality, Skeletal dysplasia | (−) |
Tucker et al | 2021 | Kansas City, Missouri, USA | Single centre retrospective cohort | 430 | Mothers met in the fetal health center whose infants were thought to have life-limiting conditions | 9 years | Cardiac, Congenital anomaly | 91% |
Doherty et al | 2021 | Ottawa, Ontario, Canada | Single centre retrospective cohort | 85 | Infants with prenatally diagnosed life-limiting conditions that were referred for perinatal palliative care | 10 years | Trisomy, Severe CNS malformation | 66% |
de Barbeyrac et al | 2022 | Paris Ile-de France region, France | Multicentre prospective observational study. | 736a | Cases of prenatal diagnosis of a severe fetal condition considered eligible for TOP in which women opted to continue their pregnancy | 2 years | Syndromic/polymalformative, CNS abnormality | 72% |
Buchholtz et al | 2022 | Berlin, Germany | Single centre retrospective cohort | 118 | Pregnant women and infants with potentially life-limiting conditions referred for prenatal palliative care counselling | 4 years | Trisomy, Complex congenital condition | 42% |
Tewani et al | 2022 | Singapore, Singapore | Single centre prospective cohort | 41 | Cases referred to the perinatal palliative care service | 3 years | Cranial malformation, Severe organ damage (heart, lung, kidney) | (−) |
Buskmiller et al. | 2022 | Houston, Texas, USA | Single centre retrospective cohort | 187 | Perinatal palliative care consults for life-limiting anomalies | 4 years | Cardiovascular/chest, CNS abnormality | 80% |