Barriers and facilitators to healthcare practitioners providing care for pregnant women with epilepsy: A systematic review and narrative synthesis

Epilepsy is one of the most common long term conditions affecting women of child-bearing age, impacting approximately 1 in 200 (0.5%) pregnancies in the UK [1]. Global figures of the prevalence of epilepsy in pregnancy are difficult to estimate, however it is suggested that between 0.3 and 0.8% of all gestations are impacted [2]. Neurological conditions are the fourth highest cause of all maternal deaths in the UK and epilepsy related deaths show no significant sign of decreasing [3]. The risk of mortality and morbidity to women with epilepsy and their babies are greater than for women without epilepsy [3]. For the pregnant woman these risks include miscarriage, stillbirth, preterm birth and maternal death [4]. For babies born to women with epilepsy these include an increased risk of congenital conditions, admission to hospital and neonatal or infant death [4]. Some risk is directly due to seizures, which, may increase in frequency for some women with epilepsy when they become pregnant [5]. This can result in accidents causing injuries [5,6] and hypoxia of the fetus [7]. Additional risk of harm relates to the use of anti-epilepsy drugs (AEDs), prescribed to 80% of pregnant women with epilepsy [4]. There is further risk when women with epilepsy are concerned about taking AEDs in pregnancy and stop taking them [[8], [9], [10]]. Uncontrolled seizures and sudden unexpected death in epilepsy (SUDEP) are real concerns.

There are clear guidelines for caring for pregnant women with epilepsy to best mitigate and address risks of harm [11,12]. These include: referral to an epilepsy specialist team, shared information between epilepsy, obstetric and primary care teams, counselling about the risks versus the benefits of medication [13], regular risk assessment (including factors such as sleep deprivation, stress, medicine adherence, seizure type and frequency), postpartum safety advice (e.g., breastfeeding, seizure deterioration) [11], access to care within two weeks, urgent referral for nocturnal seizures, action where women discontinue medication, folic acid prescription [14] and ensuring risk awareness, assessment and minimisation of failure to take AEDs [1].

Despite the risks and clear guidelines to minimise these, a national surveillance system in the UK, “Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries” (MBRRACE) [3], examining the cause of maternal deaths, stillbirths and infant deaths in the UK, found many care failures. This included lack of specialist neurologist or epilepsy care, an absence of pre-pregnancy counselling, or, when pregnancy counselling did take place, it did not always include information about SUDEP or the importance of medicine adherence and inconsistent AED blood monitoring [15]. Evidence of suboptimal care suggests that any efforts to reduce maternal and perinatal mortality and morbidity requires improvement in services and care offered to pregnant women with epilepsy [16,17]. To establish the reasons for non-adherence with epilepsy care guidelines, we conducted a systematic search and narrative synthesis of the literature.