LEARNING OUTCOMES
After completing this module, the paramedic will be able to:
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An operational definition of epilepsy is important so that paramedics can best understand their potential role in the emergency care of women with the condition who are pregnant. For the purposes of this article, epilepsy is defined as a heterogeneous neurological condition originating from the brain that results in the clinical manifestation of seizure (Kwan and Brodie, 2010).
The occurrence of seizures can have a huge impact on patients' quality of life, as well on as their physical and emotional wellbeing (Artama et al, 2017).
Status epilepticus is defined as seizure activity of longer than 30 minutes, without consciousness being regained; as yet, there is insufficient evidence to demonstrate that pregnant women diagnosed with epilepsy are more likely to progress to status epilepticus than their non-pregnant counterparts (Kwan and Brodie, 2010).
Paramedics working directly with women with epilepsy should be aware that the epilepsies are a heterogeneous group of brain diseases with the common feature of seizure (Lu et al, 2016; Pitkänen, et al, 2017). A single seizure does not lead to an automatic diagnosis of epilepsy. A diagnosis is usually made following successive seizures, which ensures the diagnosis is accurate and the specific type of epilepsy can be classified.
Formal diagnosis of epilepsy largely depends on the duration of the seizures, their typical clinical manifestation and the overall frequency with which they occur (Bell, 2017; Krishnamurthy, 2017).
Paramedics should be aware that women who are pregnant and who have pre-eclampsia and eclampsia may also have seizures (Phipps et al, 2019).
Depending on when they occur, seizures have the potential to lead to injury, which can cause additional concern for women with epilepsy who become pregnant. The relationships between these factors is significant in ensuring that the pharmacological management of the condition can be established and maintained, and must be understood by paramedics who care for these women in clinical emergency settings (Perucca et al, 2018).
High-quality meta-analysis has ensured tangible evidence has been provided and explained in relation to the varying maternal and foetal outcomes in women living with a diagnosis of epilepsy who become pregnant (Viale et al, 2015; Hernández-Díaz, 2017). This research reveals that these women are at a small but statistically significant risk of adverse pregnancy outcomes, such as antepartum and post-partum haemorrhaging and spontaneous miscarriage, as well as a greater likelihood of having an induced delivery, needing a caesarean section and giving birth after fewer than 37 weeks' gestation (Viale et al, 2015; Hernández-Díaz, 2017). All of these are significant considerations for paramedics who may be called to attend in any of these situations as an integral part of their role as firstline responders in clinical emergencies.
The aim of this article is to provide accessible information to paramedics that can be pragmatically articulated to women with epilepsy during pregnancy. This may concern their emergency transfer to obstetrics and gynaecology, which is necessary, so having an optimal level of underpinning knowledge for the specialist care of these women is the main focus of continuing professional development (CPD).
It is also of utmost importance that paramedics act only within the scope of their own clinical professional discipline and that, within their own scope of practice, they remain aware of the need to refer patients to their registered midwife, obstetrician or medical professional (Health and Care Professions Council (HCPC), 2014; Woollard, 2015). What remains outstanding for acknowledgement here is the expertise of consultant neurologists who specialise in the prescription management of anti-epileptic drugs (Stoian and MacDonald, 2017).
Presentations in primary and secondary care
There is a clear need to support and facilitate empowering women to make informed choices as they live with epilepsy before and during pregnancy. The Royal College of Obstetricians and Gynaecologists (RCOG) (2018) notes that current evidence shows that two-thirds of women with epilepsy will not experience an increase in the severity or number of seizures they experience during pregnancy.
Active planning and close monitoring during pregnancy are key to ensure positive outcomes, as the optimal time that women can live free of seizures is a key prognostic determinant. Pregnancy outcomes are also linked to the classification of epilepsy diagnosed by neurological consultants. The RCOG (2018) reviewed evidence that identifies that, of the women who had been seizure-free in the 9–12 months before conception, 74–92% of them remain free of seizures during pregnancy, depending on the classification of epilepsy with which they have been diagnosed.
| Epilepsy classification | Clinical symptomatology | Risk factors in pregnancy |
|---|---|---|
| Tonic-clonic seizures (formerly known as grand mal) | Usually uncontrolled jerking, loss of consciousness and a post-seizure manifestation of extreme tiredness and confusion | Loss of consciousness; cannot be specifically associated with intervals of foetal hypoxia, though possible; highest risk of sudden death attributable to epilepsy (SUDEP) |
| Absence seizures | Generalised seizures that consist of blank spells and unresponsiveness. Recovery is usually rapid | The physiological impact of absence seizures is less serious than in tonic-clonic seizures but, where absence seizures become progressively worse in pregnancy, this can predispose women to an increased risk of tonic-clonic seizures |
| Juvenile myoclonic epilepsy | Often occurring before tonic-clonic seizures, these jerking actions are sudden and unpredictable in nature, and are generalised seizures | Occurring after a period of sleep deprivation or upon waking or when tired, sudden jerking movements can lead to unintentional falling or dropping things, so extra care is needed when handling babies |
| Focal seizures | These depend on which area of the brain is affected. They have a definitive appearance and they may impair consciousness. Experiencing an aura is primarily an experience with focal seizures | When consciousness is impaired, there is risk of traumatic injury. Focal seizures are also associated with a risk of SUDEP |
Reflection 1
Identify any fundamentally incorrect assumptions or beliefs that you may have had regarding pregnancy and epilepsy. How might you apply this to practice in best serving women with epilepsy in everyday paramedic practice?
Need for multiagency approaches
Significantly increasing the number of women with epilepsy during pregnancy who have positive outcomes in the form of their own health and wellbeing and a healthy baby, and making good outcomes standard, were key recommendations of the MBRRACE-UK [confidential enquiries into maternal deaths and morbidity] reports (Knight et al, 2018).
While sudden expected death in epilepsy (SUDEP) is a characteristic of poorly controlled epilepsy, the potential for avoidable death is clear and addressing the lack of multiagency support and guidance in primary and secondary healthcare for women with epilepsy has been recognised as fundamental to redressing this (Razaz et al, 2017). Paramedics have pivotal involvement in this support as they are most likely to be called when a woman with epilepsy has a seizure.
Benefit and risks of drug regimens
A major concern regarding pregnancy for women with epilepsy is the risk of congenital malformation of the foetus and the link between this and pharmacological management regimens to control seizures.
Being realistic about making choices that actively contribute to the likely outcome of a healthy pregnancy and acting within scope of practice are essential for all paramedics (HCPC, 2014).
It is where maternal concern of risk to the foetus psychologically outweighs the need to preserve their own health that the discontinuation or reduction of anti-epileptic drugs often occurs, which—in the worst possible scenarios—can lead to sudden unexpected death of the mother and consequently the foetus (Devinsky et al, 2018; Einarsdottir et al, 2019). The perception of the risk of teratogenicity contributes most greatly to this, and understanding the relative benefits and risks of continuing an optimal pharmacological management regimen are pivotal to every woman (Eadie, 2019).
Sodium valproate and carbamazepine are the most commonly used anti-epileptic drugs that increase the risk of teratogenicity. Some of the most historical research reveals that, as a consequence of this, more than 15% of women prescribed sodium valproate discontinue it without medical supervision in pregnancy (Lawther et al, 2018).
Sodium valproate is often determined as the best form of control for some pregnant women with epilepsy and its benefits in stabilising the condition and preventing seizures outweigh the risk of teratogenicity (Eadie, 2019). In these instances, counselling women can be a significant means of protecting the health and wellbeing of both the women and their foetuses; they may otherwise decide to suddenly stop taking or reduce the dose of their medication without formal medical supervision and guidance (Johannessen Landmark et al, 2017; Kinney et al, 2018).
Reflection 2
Reflect on the information that you would give a woman with epilepsy if she disclosed to you that she had suddenly stopped taking sodium valproate without medical advice.
Multi and interprofessional working
The MBRRACE-UK findings on maternal deaths caused by epilepsy explicitly identified the need for greater collaborative working between obstetricians, midwives and epilepsy specialists in pregnancy (Knight et al, 2018). Being able to refer quickly to midwifery, obstetrics and GP services enables specialist management to be accessed more efficiently; in particular, neurologists whose clinical specialty is epilepsy and who work with epilepsy specialist nurses to support women living with epilepsy in pregnancy (Stoian and MacDonald, 2017).
Continuity of high-quality care is another area for focus. At present, there is little evidence on the role of allied healthcare care practitioners such as paramedics and nursing staff in the care of women with epilepsy in primary care (Leach et al, 2017). Addressing this through strategic approaches to building capacity within and between professional disciplines can only be a positive move in person-centred epilepsy care beyond the context of pregnancy.
Reflection 3
How would you prioritise the information that you give to women with epilepsy about their medication? Establish a hierarchy of five important things you would like to prioritise regarding their continued medication use while pregnant.
Advice after childbirth: manageable challenges for women with epilepsy
Carefully managing and maximising the potential of women to experience a healthy pregnancy while they live with epilepsy is the responsibility of all paramedics who come into contact with women with epilepsy. From a pragmatic perspective, this entails recommending to all women that they consult medical specialists before altering medication levels, either when planning to become pregnant or during pregnancy, to optimise care pathways for them.
Expectant mothers may have questions specifically related to their potential of being able to breastfeed while taking anti-epileptic drugs and to care for their children, as well as about the most appropriate methods of contraception after the birth.
Providing optimal healthcare for women with epilepsy in pregnancy entails considering how they perceive their potential roles as mothers to be altered by the condition. In the majority of cases, this is founded on the maternal belief that, because they have epilepsy, they may not be able to fulfil all of the roles of motherhood for the benefit of the child (Atarodi-Kashani et al, 2018).
It is now suggested that risk-assessment tools should be used to ensure women can align their choices with the potential risks to their own health and that of the foetus (Shankar et al, 2018). What is important here is the pragmatic minimisation of risk—for example, the reality of high-risk activities, such as water depth when bathing for either the mother or the child—and encouragement regarding a sense of perspective on what being a mother with epilepsy means in everyday living.
Empowering women to be pragmatic, realistic and less anxious is the most fundamental mechanism of encouraging positive outcomes; risk is an everyday concern for all parents, regardless of whether they live with a long-term medical condition (Shankar et al, 2018). Being able to make informed decisions, independently and with regard for the safety and wellbeing of their children, and having support where needed from healthcare providers, seem a pragmatic solution to this.
Research shows that 87% of women would like to be actively provided with information and counselling about the risks of anti-epileptic drugs to their unborn children, so that their new knowledge of the subject can contribute to their informed decision-making (Lawther, et al 2018). While paramedics are not involved in counselling, they can offer straightforward information and support to all pregnant women with epilepsy, in reassuring them about their condition until it is possible to hand over to specialist healthcare services in neurology, obstetrics and midwifery (Burrell et al, 2013).
Reflection 4
Reflect on your knowledge of the medicines that women with epilepsy are likely to be taking and how these might affect your decision-making in emergency care.
Implications for practice
Equity and parity of care for women with epilepsy during pregnancy remain disparate across the UK (RCOG, 2016). There has historically been no standardisation of care for the specific needs of these women; this is particularly true of the preconception period and in the early stages of pregnancy where optimal care is paramount to the best prognostic outcomes and indicators (Patel and Pennell, 2016).
Fundamental to this is implementing a hierarchy of evidence in relation to epilepsy research so it becomes accessible to women with epilepsy and their families during such a vulnerable period of their lives.
Reflection 5
Consider the word ‘empowering’ in the context of empowering pregnant women with epilepsy to care for their own health and wellbeing. Why is this a role of all health professionals who care for vulnerable people?
Conclusion
Offering women with epilepsy information concerning expectations of their pregnancy outcomes is a powerful means of supporting them as they make informed decisions, which also supports them through the additional challenges of living with epilepsy during pregnancy.
The importance of medically managed preconception care is a central message that all paramedics ought to reinforce with women and girls of childbearing age when the conversation arises, so that they can make informed choices about their continued use of pharmacological agents. Wherever possible, this ought to take place during formal appointments with medical practitioners, neurological consultants and specialist epilepsy nurses, who can give individually tailored support and advice to women with epilepsy. The positive impact of pragmatic advice cannot be overestimated and can minimise risks to women with epilepsy and their unborn children.
While sudden death of women with epilepsy remains one of the most devastating consequences, it ought to be highlighted to women living with the condition that this is mainly an outcome of uncontrolled epilepsy and that it can be avoided in the vast majority of cases.
For allied healthcare practitioners, epilepsy in pregnancy and, in particular, preconception planning periods provide invaluable opportunities to reinforce and facilitate medically advised care, which can be fundamental to positive outcomes for mothers and their children.
Understanding types of epilepsy, their presenting symptomatology, and their treatment and management interventions are all pivotal to the effective pharmacological support and management that paramedics can credibly provide.