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The telephone survey by Irish-based researchers shows nearly half of respondents were unaware that medical intervention was required for survival once born.
Half of respondents stated they did not know if perinatal palliative care (PPC) could commence at diagnosis, once the baby reached 24 weeks or not until the baby was born alive.
One-in-five had knowledge that medical follow-up after termination of pregnancy for FFA was available, while one-third were unaware that bereavement care was available following a termination as a result of FFA.
Only 55.7 per cent correctly responded that FFA is not always picked up at a 12-week ultrasound scan.
Some 970 adults were selected to take part in the survey conducted by random digit-dialling, with 814 agreeing to take part.
In Ireland, 2-3 per cent of live births and 14-to-24 per cent of stillbirths receive a diagnosis of a congenital anomaly, and this was responsible for 39 per cent of the 374 perinatal deaths that occurred in 2016.
The authors, from the Pregnancy Loss Research Group; Irish Centre for Foetal and Neonatal Translational Research (INFANT); University College Cork (UCC); and the National Perinatal Epidemiology Centre, UCC, concluded that the results highlighted a lack of accurate knowledge on FFA, its classification, diagnosis, survival, and supports available following a diagnosis of FFA among the general public.
“This knowledge deficit highlights the need for improved health information about FFA in antenatal education and public health campaigns to facilitate informed decision-making following an FFA diagnosis,” the survey, published in <em>Prenatal Diagnosis</em>, noted.
“This is of particular relevance in Ireland, where the first ever legislation for [termination of pregnancy] in FFA cases will shortly be introduced, and maternity hospitals will be expected to provide all management options in pregnancies complicated by FFA.”
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