Developing a preconception care pathway for women with epilepsy
This is a national study to develop a preconception care pathway for women with epilepsy in the UK. The National Institute of Health Research has funded this study as part of their research for patient benefit.
We hope this study will have an impact to improve the lives of women with epilepsy planning pregnancy. This will be achieved by:
- identifying essential preconception support
- identifying the stages along the pathway to step in and support; and
- understanding the outcome of this support that is important from a patient's point of view
An update of the study (November 2021)
We are at a vital stage of the project developing the UK online Delphi survey. We are developing the survey from the results of interviews and focus groups.
In the first stage of the study, which is now closed, we spoke to 57 women, their partners, spouses, family, friends and carers to understand their experiences of preparing for pregnancy. Thank you to everyone who has helped us in the survey development so far and to all those who took the time to participate in interviews and focus groups. Thank you to the study team for sharing your experiences; we look forward to your continued support.
The online survey will open in January 2022. The new date for the survey opening takes account of the quality and depth of shared experiences. The results of the interviews and focus groups are also helping to develop the care pathway and shape the content of a measure of the outcomes of preconception care. If you are already registered to take part in the survey, you should be set up and ready to go. Recruitment to take part in the online survey for patients, their family and friends and health care professionals who have not already registered is now open
The survey will find out stakeholders’ views on what preconception care should be done and when. By registering to take part in the online Delphi survey, you are helping in working together to develop a preconception care pathway for epilepsy.
Register your interest to take part, and check out the study information leaflet. We are happy to arrange a chance to discuss.
Can I take part?
You can take part if you are a:
- Woman with epilepsy, their partner, spouse, family, friend or carer
- Health professional who works with women with epilepsy
- Commissioner of services for women with epilepsy
- A person involved in providing help and support for women with epilepsy
We are currently recruiting in England, Wales, Scotland and Northern Ireland, with support from our research partners, based in each country.
What happens next?
You can register your interest to take part in the survey, happening in Autumn 2021. We will ask you to read the participant information sheet. You can contact the research team with any questions or for more information.
Nearer the time of the survey opening, we will contact you with details of how to join the online Delphi survey. We will ask a few questions about you (such as whether you are a woman with epilepsy, a partner of a woman with epilepsy, or professional involved in supporting women with epilepsy). This information will help us make sure we are representing the varied experiences of women with epilepsy and those involved in their care across the UK.
The online survey will involve two stages, completing two online surveys with a few months apart.
The benefit of completing both surveys is to strengthen agreement of what is essential and important for women with epilepsy preparing for pregnancy.
The research team
Dr Janine Winterbottom – (Research Lead) Advanced Nurse Specialist in Epilepsy at The Walton Centre Foundation Trust, Liverpool
Professor Tony Marson – Consultant Neurologist at The Walton Centre Foundation Trust, Liverpool
& 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 Obstetrican at the Liverpool Women's Hospital, Liverpool
Miss Emily Lloyd – patient co-researcher.
Take a look at our FAQs for more information on the study.
Study flow chart
Research Team Telephone: 0151-556 3721
Study email: email@example.com
Are you a healthcare professional?
Please also check out the participant information leaflet.
Page last updated: 17 November 2021