Epilepsy is the most common neurological disorder encountered in pregnancy and affects one percent of the UK population.
The majority of women with epilepsy can expect a normal pregnancy, however epilepsy continues to be an important indirect cause of death for a minority of women.
It is clear from successive confidential enquiries that the management of women with epilepsy who die can be improved.
There have been repeated calls amongst the research community for high-quality, prospective data enabling the value of current policy recommendations to be assessed.
1st October 2015 – 30th September 2016
Amongst women presenting for maternity care, approximately 1 in 200 are receiving treatment for epilepsy, with a mortality risk that is almost 10 times greater than that of the general maternity population (100 versus 11 per 100,000 maternities respectively).
Between 2010 and 2012, 14 maternal deaths were attributed to epilepsy (maternal mortality risk =0.04/100,000), more than any direct cause of death with the exception of thrombosis, and unchanged from 2006-2008. Of these 14 deaths, 12 were classified as cases of ‘Sudden Unexplained Death in Epilepsy’ (SUDEP). Whilst the definition of SUDEP implies a diagnosis of exclusion, expert-consensus maintains that generalised tonic-clonic seizure activity is likely to be a significant component of the phenomenon and should be considered as a sentinel event leading up to death. As such, it follows logically that women in whom generalised tonic-clonic seizure activity persists during pregnancy represent a severe disease phenotype amongst women with epilepsy, with an increased risk of mortality.
Treatment goals for women with epilepsy in pregnancy target a seizure free ‘steady-state’ before conception on the basis that 1) the risk of seizures during pregnancy reduces as a function of the length of the seizure-free period before conception, and 2) those women who are able to remain seizure free for >12 months prior to conceiving are highly unlikely to have a recurrence of seizure activity when pregnant. Whilst this is certainly feasible for the majority of women, it is clear that seizures persist for a minority of women in whom it is considered that treatment plans are adequate. What is unclear amongst this group of women with poorly controlled epilepsy, is the relative contribution of women with severe, drug-resistant epilepsy versus the proportion of women whose disease management is suboptimal, or in whom fears about the potential for teratogenic side effects when using anti-epileptic drugs compromises their treatment adherence.
To use the UK Obstetric Surveillance System (UKOSS) to determine the incidence of poorly controlled epilepsy amongst pregnant women in the UK and examine the management of the condition as well as maternal and neonatal outcomes.
What is the prevalence of poorly controlled epilepsy amongst pregnant women in the UK?
How are women clinically managed with poorly controlled epilepsy?
What is the uptake of specialist obstetric and epilepsy services amongst women with poorly controlled epilepsy?
What are the seizure characteristics of pregnant women with poorly controlled epilepsy?
What are the maternal and newborn pregnancy outcomes amongst women with poorly controlled epilepsy compared to those with well controlled epilepsy?
Any pregnant woman in the UK who fulfils at least one of the following criteria:
A woman with epilepsy who dies during pregnancy or up to day 42 postpartum, where the cause of death is directly attributed to the consequences of epilepsy, including SUDEP.
A woman with epilepsy who is admitted to hospital as an inpatient for management of generalised tonic-clonic seizures during pregnancy or the postpartum period.
All women being treated with >3 anti-epileptic drugs simultaneously at any point during their pregnancy.
This study has been funded by the National Institute for Health Research (NIHR) as part of a Professorship award to Professor Marian Knight.
Ethics committee approval
This study has been approved by the North London REC1 (REC Ref. Number: 10/H0717/20).
Bryn Kemp and Marian Knight, NPEU; David Williams, University College London Hospitals.
^Adab N, Kini U, Vinten J, Ayres J, Baker G, Clayton-Smith J, et al. The longer term outcome of children born to mothers with epilepsy. Journal of neurology, neurosurgery, and psychiatry. 2004;75(11):1575-83.
^Sveberg L, Svalheim S, Tauboll E. The impact of seizures on pregnancy and delivery. Seizure. 2015;28:29-32.
^Edey S, Moran N, Nashef L. SUDEP and epilepsy-related mortality in pregnancy. Epilepsia. 2014;55(7):e72-4.
^Battino D, Tomson T, Bonizzoni E, Craig J, Lindhout D, Sabers A, et al. Seizure control and treatment changes in pregnancy: observations from the EURAP epilepsy pregnancy registry. Epilepsia. 2013;54(9):1621-7.