1 Guidance

1 Guidance

1.1 Current evidence on the safety and efficacy of septostomy, with or without amnioreduction, for the treatment of twin-to-twin transfusion syndrome (TTTS) does not appear adequate for this procedure to be used without special arrangements for consent and for audit or research.

1.2 Clinicians wishing to undertake septostomy, with or without amnioreduction, for the treatment of TTTS should take the following actions.

  • Inform the clinical governance leads in their Trusts.

  • Ensure that the parents understand the uncertainty about the safety and efficacy of the procedure, the range of treatment options available and that one or both twins may not survive. The parents should also understand that in spite of amnioreduction, there is still a risk of serious abnormalities in the development of the nervous system among survivors of TTTS. Clinicians should provide parents with clear written information. In addition, use of the Institute's information for patients ('Understanding NICE guidance') is recommended.

  • Audit and review clinical outcomes of all patients having septostomy with or without amnioreduction for the treatment of TTTS (see section 3.1).

1.3 Clinicians should consider case selection carefully because there is uncertainty about the stages of TTTS for which this procedure is appropriate.

1.4 This procedure should only be performed in centres specialising in fetal medicine and by an appropriately constituted multidisciplinary team.

1.5 Clinicians are encouraged to collaborate on longer-term data collection across the centres performing septostomy for the treatment of TTTS. The Institute may review the procedure upon publication of further evidence.