Women left in dark over pregnancy and SUDEP risks
New research published in the Seizure Journal shows women are vulnerable to dying prematurely because they are living with higher risks / unaware of the risks they may be facing because of their epilepsy.
Researchers from Plymouth University, SUDEP Action, Cornwall Partnership NHS Foundation Trust and the University of Oxford have analysed over 5½ years worth of data shared by women with epilepsy via the EpSMon app – an app developed by SUDEP Action and Cornwall Partnership NHS Foundation Trust. A total of 2,158 women shared information about their epilepsy, lifestyle and wellbeing through 4,000+ EpSMon risk assessments – showing some alarming findings:
- Only 25% of women had received pre-conception counselling & were aware of epilepsy risks to be aware of during pregnancy.
- 54% of women were aware of SUDEP and its risks – suggesting that efforts to communicate these risks are still varied in impact and more needs to be done to ensure this information is clearly understood.
- Risk awareness was higher in younger women with epilepsy (aged 21-30).
- 11% of women were taking Sodium Valproate for their seizures.
The findings paint a worrying picture. Because awareness of the risks linked to epilepsy mortality/SUDEP take time to be understood, women are potentially making uninformed choices about their epilepsy medication, care and lifestyle. For some women, this could be putting them at serious risk of dying prematurely, as highlighted in the MBRRACE report which showed a doubling of maternal epilepsy deaths.
Professor Rohit Shankar, the research lead, said: “This study has a lot to unpack. It is the first longitudinal prospective study of patient reported outcomes. It is also one of the first studies looking to understand digital self-empowerment. The study shows the that women with epilepsy of child bearing age generally remain unaware of SUDEP and pregnancy related risk. It is a challenge to engage them meaningfully and emotionally on this subject. While it is important to continue current initiatives of communication of risk it is clear we need more than just the conventional models to engage at risk populations such as those in this study.”
Sammy Ashby, SUDEP Action’s Deputy CEO and lead on the EpSMon project said: “It is vital that all people with epilepsy, not just women, receive repeated and personalised communication about epilepsy risks and how they apply to them, so they’re able to take positive steps to reduce them. As it takes time for these messages to be heard, and because risks change over time, it is vital these conversations are repeated -the EpSMon app can play a role in this by helping to provide the periodic check directly with people with epilepsy. Otherwise there is a real danger that harm, and preventable deaths will continue to happen, and we’ll see a rise in the already too high figure of 21 epilepsy deaths happening each week in the UK.”
Jane Hanna, SUDEP Action CEO, who is leading an epilepsy coalition on access to medications (see here) said: "Epilepsy pregnancies are high risk. We hope this research will help national and local policymakers think again about where they are focusing their efforts. Women with epilepsy and their families need vital support to keep them safe and empower them to participate in very complex decisions about their care. This has not been happening. Instead, new national medicines restrictions will require clinical attention on extra appointments for many people with well controlled epilepsy, adding significantly to long clinical backlogs. We are pleased that we have EpSMon to offer women the evidence and the chance to advocate for treatment should these policies go ahead."