Developing a preconception care pathway for women with epilepsy - summary of study findings 

 

 

Why the study was needed

The Epilepsy Preconception study aimed to develop a care pathway for women with epilepsy in the UK. Preconception care is vital because epilepsy and epilepsy drugs can increase the risk of problems for the mother and baby. These include:

  • Risks of worsening seizure control if a woman stops taking her epilepsy drugs for fear of harm to the baby. These risks include the chance of injury or even death in epilepsy.
  • Risks of developmental problems or congenital disabilities if, in pregnancy, the woman is not taking the best type and dose of an epilepsy drug.

These risks include avoiding valproate (Epilim), which has known risks. Preconception care offers the chance to avoid some of these risks. Because it is unclear why not all women have this support, we completed this study to identify the essential content of preconception care and the support stages.

What we did

In stage 1, we held interviews and focus groups with women with epilepsy, their partners and family and reviewed existing literature. Based on these findings, we developed a survey and conducted a pilot study to fine-tune the questions.

In stage 2, we completed a two-round survey with healthcare professionals, voluntary organisations and women with epilepsy, their partners and family to prioritise the content of preconception care.

In stage 3, we held a consensus meeting with representatives of each stakeholder group.

What we found out

We achieved agreement on the priorities of preconception care. These priorities included knowing about the effects of taking anti-seizure medicines during pregnancy and having support to address concerns about seizures and medicines.

Feedback agreed that a preconception care pathway benefited all involved and that future development is worthwhile. Therefore, we plan to use our learning from this study to plan feasibility trials towards implementation. Further information on the results is available here.

Thank you to everyone who participated in the Epilepsy Preconception Study and represented their stakeholder group. A big thank you to everyone who helped on this project, with a special thank you to those who participated in interviews and focus groups to help pilot the survey.

What next

The study results will be published. And we will update with links to publications as they become available. We are working on implementing the next steps of this study, which include further research to test the pathway in routine care and how best to implement the study findings.

Getting involved

To understand how we can best put into practice the preconception study findings, we need the help of those with experience preconception care to get involved and share their thoughts about how to make changes in care. We have some ideas that we are exploring and plan to share in a series of patient and public involvement events. We would value you being part of our future research plans, and we will advertise these in the coming months, and in the interim, we welcome any expressions of interest.

We are committed to the participation and engagement of those who use and care about NHS services. Getting involved in research as a participant or advisor and joining a patient and public event to share your opinions will lead to a greater understanding of the needs of women with epilepsy who wish to plan for a pregnancy. This helps improve access to services, reduce differences in health in different communities, and see things through the eyes of those who use services.

If you would like to discuss this study’s findings and our future research plans, please get in touch with Janine Winterbottom (Project Lead) and Miss Emily Lloyd (patient co-researcher) via email to wcft.preconceptionstudy@nhs.net 

 

 

Can I take part?

We appreciate your interest in this research and are happy to receive e-mail enquiries about this study and any collaboration. We are not recruiting into a study at this stage. We are working on the next steps and planning patient and public involvement events. We are happy to receive your expression of interest in getting involved. Please email the study team if you want to learn more about the future research we are planning and get involved in our patient and public events. We will contact you with details of future events.

For updates about this study and any future research, please get in touch with Janine Winterbottom (Project Lead) and Miss Emily Lloyd (patient co-researcher) via email to wcft.preconceptionstudy@nhs.net or preconceptionstudy@liverpool.ac.uk 

What happens next?

The Epilepsy Preconception study is complete. The study results will be published. And we will update with links to publications as they become available. The preconception care study team is working on completing the research cycle, completing the stages described by the National Institute of Health Research. We are at the stage of dissemination and implementation. We focus on completing the research cycle, exploring the preconception care research priorities, and designing future research to support service improvement.

 

The research team

Dr Janine Winterbottom – (Research Lead) Advanced Nurse Specialist in Epilepsy at The Walton Centre NHS Foundation Trust, Liverpool

Professor Tony Marson – Consultant Neurologist at The Walton Centre NHS Foundation Trust, Liverpool and Professor of Neurology at the University of Liverpool

Dr Adam Noble – Senior Lecturer (Health Service Research) at the University of Liverpool

Professor Pauline Slade - Prof in Clinical Psychology/Consultant Clinical Psychologist at the University of Liverpool

Professor Catrin Tudur-Smith - Professor in Medical Statistics at the University of Liverpool

Dr Kiran Jilani – Consultant Obstetrician at the Liverpool Women's Hospital, Liverpool 

Miss Emily Lloyd – Patient co-researcher

If you are interested in joining the research team and adding your contributions and collaborations, please get in touch with the research team.

Publications and updates

The study results have been presented in poster format at the International League Against Epilepsy - British Branch Annual Scientific Meeting October 2022 by Janine Winterbottom and Emily Lloyd.
 

Study flow chart

Take a look at the study flow chart for more information 

Contact Information

The Research Team can be contacted by telephoning the Neuroscience Research Unit on 0151 556 3721 or by emailing preconceptionstudy@liverpool.ac.uk / preconceptionstudy@nhs.uk 

Are you a healthcare professional?

Thank you for helping share details of the study and getting involved. If you have any questions, please e-mail preconceptionstudy@liverpool.ac.uk 

Page last updated: 14 August 2023