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 (September 2022)

Stages one and two are now complete - study recruitment is now closed

Thank you to everyone who participated in the Epilepsy Preconception Study and represented their stakeholder group, and those who took the time to participate in interviews, focus groups, and help pilot the survey.

We applied a pre-specified sample frame to identify consensus meeting participants, selected as a representative sample of stakeholders completing the round two survey. The online consensus meeting will take place on Wednesday 14 September. T

For further information check out the study information leaflet 

If at any time you would like to discuss the consensus meeting, please contact: Janine Winterbottom (Project Lead), Miss Emily Lloyd (patient co-researcher) and Jessica Gay (Research Assistant) via preconceptionstudy@liverpool.ac.uk

 

 

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 preconceptionstudy@liverpool.ac.uk 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

FAQs

Take a look at our FAQs for more information on the study.

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 

Please also check out the participant information leaflet.

Page last updated: 02 September 2022