Sacco, Adalina; (2019) Implementation of Open Fetal Surgery for Spina Bifida in the UK. Doctoral thesis (M.D(Res)), UCL (University College London).

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Abstract

Spina bifida is a congenital neurological condition with lifelong physical and mental effects. Open fetal repair of the spinal lesion has been shown to improve hindbrain herniation, ventriculoperitoneal shunting rates, independent mobility and bladder outcomes for the child and, despite an increased risk of prematurity, does not seem to increase the risk of neurodevelopmental impairment. // We proposed to set up a fetal surgery centre in London, as a joint venture between UCLH and GOSH in collaboration with UZ Leuven, Belgium. Implementation of this treatment option for patients from the UK and Republic of Ireland has been the subject of my two year project. // I performed an initial review of existing global centres to establish what was already available, which techniques were being used and to confirm that a centre was required in the UK. I also conducted a systematic review into maternal outcomes of this and other fetal surgery, as this appeared to be a neglected area. This demonstrated the maternal morbidity associated with fetal surgery; the risk of severe complications was found to be approximately 4.5% for open fetal and 1.7% for fetoscopic surgery. // I have, with the help of many other people, set up this new clinical service and have developed local pathways and protocols to facilitate this. I have performed a cost-analysis study to evaluate the cost implications of this surgery; this showed that surgery itself is roughly equal to, if not slightly cheaper than, than the standard postnatal surgery at the point of operation. Prematurity (if it occurs) will bring the cost up, but the expected reduced healthcare utilisation of these children over their lifetime should bring the cost down. // Acceptability is an important consideration when introducing a new and potentially controversial technique. I surveyed healthcare workers throughout the UK and found there was general support for the concept of fetal surgery, but concern about long-term outcomes, which we have been mindful of in our planning. // We began seeing patients in January 2018 and to date we have evaluated 27 patients at UCLH and operated on 13 of them, either in London or Leuven. Eight of these patients have delivered and initial outcomes have been good, with no major maternal or fetal/neonatal morbidity. We will be following outcomes very closely to monitor for long-term data and complications. I have assessed patient experience and acceptability with all women we have seen, and this has been extremely positive. // Now this service is established, future work should include monitoring long-term patient outcomes, developing techniques for earlier detection of spina bifida (which we have attempted to do in our department, and is described in chapter 5.1) and evaluating emerging evidence regarding less-invasive methods of surgery.

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