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.
(*This study is funded by the NIHR [RfPB (NIHR200791)]. The study team acknowledge support from NIHR Research for Patient Benefit and Clinical Research Network. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.)
We hope this study will 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 what outcomes of preconception support are important from a patient's point of view
An update on the study (June 2022) - Stage one is now complete
Thank you to everyone who participated in stage one of the Epilepsy Preconception Study - the online UK survey. The survey recruitment is now closed. All participants completing the survey in stage one will automatically receive an invite to participate in the the stage two survey. All participants will receive an e-mail about this, which opens in late June.
We are grateful for everyone who helped us in survey development, who took the time to participate in interviews and focus groups, and who participated in the Epilepsy Preconception study and represented their stakeholder group. We are analysing feedback and reviewing additional items for inclusion in survey round two. We continue to work on this vital project stage, the UK online Epilepsy Preconception Delphi survey.
Save the date: The online consensus meeting will take place Wednesday 14th September 2022
For further information check out the study information leaflet
If, at any time, you would like to discuss the Delphi survey or if you are experiencing any difficulty accessing the online system, please contact: Janine Winterbottom (Project Lead), Miss Emily Lloyd (patient co-researcher) and Jessica Gay (Research Assistant) via email@example.com
Can I take part?
This study is closed for recruitment. I appreciate your interest, and we remain happy to receive e-mail queries about this study and any collaboration. Please e-mail the study team on firstname.lastname@example.org for updates about this study and any future research.
What happens next?
The Epilepsy Preconception study survey involves completing two online surveys a month apart. The first online survey has happened, and we are analysing the results and building the second survey. Everyone involved in the first survey will receive an email invitation to participate in the second online survey.
We will remind you of your log-in information and a reminder of your unique study ID. Continuing to complete the study confirms your agreement to participate and receive e-mails about the survey completion. You will also receive a confirmation e-mail of successful completion. We will ask you if you'd like to be kept up-to-date about the study and offer you the option to get involved in the final stage consensus meeting. The consensus meeting is optional. We will provide further details at the end of the second survey.
The second survey will take about 20-30 minutes to complete, and you can take breaks and save your responses. It will remain open for approximately four weeks.
Completing both surveys strengthens agreement on what is essential for women with epilepsy who wish to plan a pregnancy.
Click here for a guide to completing the online survey
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 Obstetrican at the Liverpool Women's Hospital, Liverpool
Miss Emily Lloyd – Patient co-researcher
Miss Jessica Gay – Research assistant, University of Liverpool
Take a look at our FAQs for more information on the study.
Study flow chart
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 email@example.com
Please also check out the participant information leaflet.
Page last updated: 08 June 2022