Ileostomy and Internal Pouch Association, known as IA, is a registered charity supporting people living with an ileostomy or internal pouch, their families, friends and carers.
DonatePAVF-COMS - Pouch Anal and Vaginal Fistulae Core Outcome Measurement Set
Date
2025
Institution(s) involved
London North West University Healthcare NHS Trust.
Pouch anal and vaginal fistulae are severe complications of pouch surgery that can significantly impact an individual’s ability to work and function within society. Therefore, research must be undertaken to improve overall outcomes for this subset of patients.
Research has taken place to investigate which treatments for pouch anal and vaginal fistulae are better for patients. There are currently several studies that test the same treatment, allowing researchers to combine results and reach a more confident conclusion. However, for this to be possible, the same outcomes must have been used across studies. Core outcome sets have been developed to work out which outcomes such as pain and quality of life should be measured. Core measurement sets will determine how researchers will measure these outcomes, for example through the use of patient-reported quality of life scales. A core outcome set has already been developed for pouch anal and vaginal fistulae, and the next step is to develop a core measurement set.
Please see the Patient Information Sheet below for more information and how to register. Registration is voluntary but you must be over 18, live in the UK and have pouch anal and vaginal fistulae.
