Call for involvement: pre-conception epilepsy pathway

The National Institute for Health Research (NiHR) are looking for contributors to a study developing a pre-conception epilepsy pathway.

The study which will use the Delphi method to develop the pathway, is looking for contributions from commissioners and providers of pre-pregnancy support services for women with epilepsy.

More information: from NiHR

Are you providing or commissioning pre-pregnancy support services for women with epilepsy? We are targeting recruitment for an NiHR Delphi study to develop a pre-conception epilepsy pathway more details for which can be found here: tinyurl.com/epilepsypreconceptionstudy

NIHR200791 Developing a preconception care pathway for women with epilepsy in the UK – A mixed methods Delphi study

Study Team: Tony Marson; Adam Noble; Pauline Slade (Professor of Clinical Psychology, Liverpool University); Catrin Tudur Smith; Miss Emily Lloyd (patient researcher) and Dr Jilani (Consultant Obstetrician Liverpool Women’s Hospital)

Women with epilepsy are a high risk group in pregnancy, with ten-fold increased risk of death (including avoidable deaths, and sudden unexpected death in epilepsy). For the majority they require ongoing anti-seizure medication with only two of the potential over 20 drugs able to be prescribed deemed safe in the latest MHRA report of evidence (07/01/2021).

Preconception interventions following a life course approach have the opportunity to improve maternal outcome. However women with epilepsy continue to experience unplanned pregnancy, even with high risk drugs such as valproate, and there is evidence of wide variability in service delivery in the UK. To address this, this study was awarded a grant from the NIHR Research for Patient Benefit.

We are now targeting recruitment to include a breadth of stakeholder groups supporting women with epilepsy in your region and this includes identifying or sharing study details with providers and commissioners. I thank you for any opportunities to share the study details, and value your opportunity through your professional contacts to widen the representation of professionals to get involved in this study.

The study email: preconceptionstudy@thewaltoncentre.nhs.uk

If you need further details the study lead is happy to discuss this further she is Dr Janine Winterbottom, janine.winterbottom@thewaltoncentre.nhs.uk but we do hope your providers and commissioners may be interested in supporting this study.