J-Pouch anal and vaginal fistula study update

J-Pouch anal and vaginal fistula study update

Updated 19 March 2025

Further to our last update on this study, we are pleased to report that the team are now ready to progress to the next stage and will be sending the questionairre to the eligible participants. People that have already registered their interest in participating will be contacted directly. If you think you may be eligible and are interested in taking part in this study, please email Dr Easan Anand at lnwh-tr.pavfcoms@nhs.net

You can download further information about the study below.

PAVF-COMS-Patient-information-sheet-March-2025

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Updated 30 July 2024

We previously announced a new study into fistulae being undertaken by Dr Easan Anand, a Research Fellow at St Marks Hospital.  As a reminder, a fistula is an abnormal connection (or tube) between an organ, vessel, or intestine and another organ, vessel or intestine, or the skin. They are particularly troublesome to treat – the best cure is for the body to close the fistula naturally using scar tissue.  But this takes a long time and the “tube” has to be kept open during this time to prevent a closed area developing into an abscess.  Hence the use of a Seton drain to help keep the fistula open whilst it is healing. 

The goal of the research will be to evaluate the success of treatments for fistulae and identify the optimal method(s) to achieve the best outcomes for patients.  Dr Anand will be building on work started by Dr Lillian Reza and Consultant Phil Tozer on this project.  One of the fundamental challenges is to develop a questionnaire which patients can complete to evaluate their quality of life (QoL).  The tool can then be used to measure the success of treatments in a standard way. 

By way of an update, Dr Anand reports that there have been delays in finalising the pouch fistula quality of life scale (abbreviated to PAVFQOL). This scale is essential and will be the first and only scale which is specific to pouch-related fistulae, so it is well worth taking time to ensure it is right.  Hence to all those pouchees who volunteered to assist with the research, Dr Anand sends his profuse thanks and asks that you be patient for a few more months whilst the scale is finalised.  He will then be rolling out the questionnaire for volunteers to complete. 

If you are a pouchee with a diagnosed fistula (either now or in the past) and you would like to join up and take part in this research then please email Dr Lillian Reza at  l.reza@nhs.net. All information will be treated in the strictest confidence and the research project has been improved by an independent ethical committee. 

Regards

David Davies
RLG Chair

You can view the original article on this study below.

Have you ever been diagnosed with – or treated for – a J pouch-related fistula and would you be interested in taking part in a St. Mark’s Hospital based study?

If so, would you like to help Dr Easan Anand with a research study he is leading into outcome measures for fistula treatment? Outcome measures include such things as pain, quality of life and incontinence and it is important for these to be standardised so researchers around the globe can work with the same outcomes.

Easan is working at St Marks Hospital under the supervision of Phil Tozer and Ailsa Hart, who have both given webinars for RLG in the past

Who are we looking for?

You can take part in this study if you have ever been diagnosed with or treated for a fistula related to pouch surgery and you are over the age of 18 years.

You can email Easan on lnwh-tr.pavfcoms@nhs.net if you have any further questions.

Introductory discussion meeting on Teams

Easan will be holding an introductory study management group meeting on 18 March 2024 at 7:00 – 7:30 pm on Teams. This will be purely an introductory discussion and is a fantastic opportunity to find out more about the study if you are considering taking part.

If you would like to attend, please email Easan on lnwh-tr.pavfcoms@nhs.net to request the Teams meeting link.