TACTIC – Patient and Public Involvement Day

Discussing tactics for reducing complications and improving quality of life for rectal cancer patients

Another excellent patient and public involvement day was hosted by the Bowel Disease Research Foundation on Monday at the Royal College of Surgeons.

With Nicola Fearnhead, Consultant Surgeon at Addenbrookes Hospital at the helm and being co-piloted by surgeon Matt Lee and trainee surgeons Abi Vallance and Peter Vaughan-Shaw – patients were sailed through a journey of expert discussion all in the cause of helping to fine-tune the design of research trial.

Patient and Public Involvement (PPI) – despite being an acronym that needs major surgery itself – is a central tenement to everything we do here at Bowel Disease Research Foundation.  Essentially what PPI in research is all about is getting people together to discuss experience, debate what is good and what can be improved and to ensure that patient outcomes remain at the very core of the debate.

This time we were looking at a study that is being developed to try and work out the best ways to improve short and long-term outcomes for patients who have a temporary ileostomy made at the time of surgery to remove cancer of the back passage (rectal cancer). This is a project that was highlighted as a priority area of research in the Delphi exercise commissioned by BDRF.

Essentially the study is looking at reducing complications and improving quality of life.

Complications arise in 20-30% of patients after surgery for closure of an ileostomy. These include infections, pneumonia, diarrhoea a burst bowel and even the risk of death.

Quality of life can be measured in many different ways but it is crucial in this study that patients are involved in the discussion right from the outset.  Quality is very subjective.  For some, personal appearance is high on the list for consideration, for others, it’s more about the ability to return to work or to be able to go out in public with the confidence that they won’t have to face potentially embarrassing situations.

The team behind this medical research study will hope to trial whether the timing of when a reversal of a stoma has any effect or benefit to patient outcomes and alongside this to test, in patients for whom delayed closure is not an option, various interventions that could reduce complications arising and thus improve quality of life.

One of the participants in the study day commented;

“It was really fascinating and stimulating day, with a great mix of bowel cancer patients, and very knowledgeable and dedicated professionals. I found out much more around the subject of stoma closures than I had previously known: particularly around the leakage risks and long-term complications. It’s a really worthwhile study to investigate the viability of early closures for certain patients, and how a variety of bowel preparations might help those with the standard later closures.”

Peter Rowbottom CEO of the Bowel Disease Research Foundation who attended the day comments

I was overwhelmed by the whole experience, to be honest with you, but having attended similar sessions before was not surprised by the quality of discussion that was being generated.  PPI is not just a box ticking exercise for researchers, patient’s views and experiences are very much at the forefront of project design and this was very evident here.

This trial has enormous potential to radically improve patient care and demonstrates really cutting edge and innovative treatments. I am excited about keeping an eye on how this one progresses and really grateful to all the people who attended this excellent day”

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