By Glen Saffery, Co-ordinator, Bowel Research UK

Published: 22 April 2021

As AMRC members, we all do research to improve the lives of people in need. Sometimes, that’s through developing our understanding of what causes disease, or working on new drugs, surgical techniques and other methods of care.

Measuring the impact of a disease

To really understand the effectiveness of treatment though, we first need a way of measuring the impact of disease on the everyday life of those affected, and especially how this changes when medical teams use certain interventions.

When it comes to a chronic disease like Crohn’s, this impact is enormous – and unique from patient to patient. Patient Reported Outcome Measures (PROMs) rely on patients themselves to identify what outcomes research should deliver and are the best possible way of assessing how much effect treatments have. As such they are a vital tool for delivering truly life-changing research.  

Assessing quality of life in Crohn’s patients

Around a third of all Crohn’s patients will develop a perianal fistula. This is an opening between the anal canal and the skin around the anus. Perianal fistula can be absolutely devastating - holding people back at work or even stopping them working at all, demolishing self-esteem and emotional wellbeing, and inhibiting love lives by stealing the intimacy of sex.

Sadly, this is also a very difficult condition to treat, in many cases no effective method can be found. People suffer for years with little hope of resolution – a desolate situation for them and a distressing one for their medical team.

We know this urgent critical gap can only be filled by research. The first step to doing that was to create a reliable way of assessing the quality of life for patients affected by perianal fistula, which could be applied before and after treatment and empower patients themselves to find what improves their life. Not only can this be applied to measure how well existing treatments work for individual patients, it can also be used to test potential breakthrough interventions in future.

Bowel Research UK funded the development of the Crohn’s Anal Fistula Quality of Life (CAF-QoL) scale to do just that.

The scale is a simple questionnaire that patients can answer periodically, with the score indicating a level of wellbeing at that point in time specifically with regard to their fistula. It was developed with hundreds of fellow patients to ensure it captures information that truly matters to people living the realities of this condition every day. 

Looking to the future

The CAF-QoL is now live after its publication in the BMJ’s GUT journal. It is available as a free resource to charity-funded research teams and those working out of academic or NHS institutions. It can also be used by medical teams as a clinical tool and support patient care.

We believe its impact can be huge in improving people’s lives, and in the development of new treatments for what is currently a massive unmet need.

It is a wonderful example of how charities’ seed-funding of research can underpin the development of tools that can be used in large scale trials and have a permanent impact on the lives of the patients we exist to support.

To find out more about CAF-QoL, and how you can use it in research into IBD and perianal fistula, please contact Sam Adegbola, Phil Tozer or Kapil Sahnan.